Celiac Disease & Fructose Malabsorption

Does your school help you out?

2011-09-05T21:36:00.000-07:00

With Sugar, we will pack her lunch. Even though we have three choices to choose from for an "entre," I don't trust what is in the ingredients. Her diet is still a daily struggle.

Cole on the other hand, even though his school requires (more the FDA) a letter EVERY year from his doctor stating he has Celiac, can eat some of the foods the cafeteria prepares for him. I do tend to worry about cross contamination in the back of my mind, I have been a bit more lenient than I imagine others would be. I trust until they give me a reason not too.

Some of the items that the school prepares for him (to hopefully help you when speaking to your school) is they bring in Chex cereals for breakfast for him. The single serve packs. They also have a variety of fruits and veggies.

For lunches, they do bring in rice pasta for him and will make that with their sauce. They also will make him a salad and put frito strips (GF) on them with chicken and other condiments. We are able to bring in our own dressing and leave it in the teacher's fridge if necessary.

The school has also sat down with him and asked him what types of foods he likes and information on it so they can try and get that in for him as well.

Does your school system do anything for you and what choices do they give the kids with special dietary restrictions?

Signs and Symptoms

2011-07-12T18:52:00.000-07:00

After researching more on my daughter's rash, I am more than ever convinced she could have Candida in her system that is causing her issues. Specifically:

white coating on her tongue (not too thick)
rashes on her body that are confused with atopic dermititis
always wanting sweet foods
bloating, gassy, GI issues etc
she has had the red, itchy eyes
bad breath
irritable
allergies
asthma
spit test that had her spit moving down into the water with a trail

Yes, Sugar has been diagnosed with fructose malabsorption, but I wonder how much that is really influenced by the above. I would have an answer if the doctor's would test her like I have asked. Once on a prior occassion on a walk-in visit for more asthma meds and once via phone to her GI doctor since it is in relation to her GI issues. I was told by the nurse (who never passed on my question to the doc) that I need to see her other doctor. Sigh. I asked her to please pass on the message to the doctor and have him return my call. Really? Now as I sit here and wait, I have no answer to my question.

There are times that it seems pointless to even go into the doctor. Why bother. They are going to tell you that what you researched isn't true and a waste in time to test for. I like her GI doctor, and he is rather proactive, but getting to him can be a trial. I cannot tell you how many times I went to the derm and was told it was atopic dermititis and to try this or that. Well, they aren't working!

Then I wonder if there is a relation to Celiac and her FM issues. Yeah - but what if it was the Candida. The more I read about it - if you do have Candida (or a yeast infection on skin/etc) then it could influence food allergies, celiac gluten issues, or even asthma.

what if she truly has Candida and the FM is in reality non-existant in her. If she gets treated for Candida - maybe she can bypass this horrible diet or add some things she can't have now. Even if I can add corn or wheat products would be wonderful!

I wish that the medical professionals are more open to folks coming in and showing research and even testing to rule things out. Get your head out of your arse and realize you might not know everything and listen. I am not claiming I know everything, but this is MY daughter and I want stuff ruled out so her suffering can go away.

"What food can I eat"

2011-06-30T20:27:00.000-07:00

insert whiney voice from my daughter. And I respond with, "we would know more, but since the sneaking of food hasn't stopped, we have to start over again and again." And then she stomps to her room and says "I HATE THIS DIET!"

Yeah, so do I.

Probably the majority of this blog could be commentary for hate, hate, hate, hate. It is rather depressing, eh? I agree. And given my mood as of late, I am wallowing in it too. I am sick and tired of telling my daughter no, no, no, no to everything she asks to eat.

Some of the things she has been able to tolerate thus far - or I am fairly positive are okay:

gluten free bread or sourdough bread
Rice (which she gags on so she refuses to eat it)
Potatoes ( I usually cut these up, mix in olive oil, and bake them for her; she refuses mashed tators)
fruity pebbles (amazing, huh - but I find that most of the ladies on a support board can tolerate it as well)
Rice chex (which we have on hand as I also have my son who has Celiac)
eggs (I have taken to making an egg on a sourdough muffin [orowheat] and she eats this)
frozen blueberries (they are grubbin right out of the freezer; eaten in moderation)
small amounts of koolaid made with cane sugar
strawberries (again in moderation)
cheese (check the ingredients - this goes on the muffin too)
milk
french toast made with gf bread or sourdough bread
lunch meat (check the ingredients; meat with no bbq sauce or plain (i.e. steak, hamburger, pork chops, ribs - we get organic meat from my father-in-law's farm)
plain chips
rice pasta - Tinkyada has one
Annie's Gluten Free Rice Pasta Mac n Cheese
She will have nachos with chips and cheese only

All sugar substitutes are a no-go for her and cause her rash to explode in irritation.

speaking of rash, I had to take her in to the clinic for asthma meds and her rash was mentioned. The doctor (who she has never seen) was adament that it was NOT a yeast rash. Sigh. I will try and do some more research and see if I can print of stuff to take to her regular GI doc and pray he can find some more answers. Someone else mentioned milk protein - I am wondering if there is a way to test for that as well and see if that is bothersome to her. Not sure on that one.

Anyways, I hope this list will help anyone else not sure where to begin. I am over a year into this and still don't know where to begin and continue to walk the path in dazed confusion.

Interesting if I say so myself...

2011-06-24T23:06:00.000-07:00

Tonight I had a conversation with a friend that has a young daughter going through some of the same issues as Sugar. She took her to a naturopath. She asked me an innocent question. "Do you think it is yeast causing her rash." Hmmm...can't say that I have. When you think of yeast infection, you think of well....the one that affects women's nether regions.

So, off to research I went while chatting with her left and right. The site I have found so far that gave some decent info was for candida-and-gut-dysbiosis. Then I started getting excited. NOT because she could possibly have it - just that I found a reason her rashes could possibly not be clearing up.

Holy shiznit! When I read over the symptoms or reactions, I nod yes to most of them. Then, I am like - how do I stress testing to the doctor and is there even a test we can order to see if it is in fact a rash of yeast rather than any other issue. I realize SIBO can be a form of Candida, but her treatments thus far of Flagyyl have yet to clear it up, and if it does - it comes right back causing me to try and remember if it did clear up or not (yes, I should journal but I don't). but, one of the cheapest tests they have is for her to spit a loogie in a glass of water...okay, maybe not a full-fledged loogie - but "spittle" in a cup of water. Wait ten minutes and if it does one of two things you have a path to go down.

And, I continue on to read...wow - ethanol created by the sugar and crap fermenting in her body - and ponder for a moment (yes I used the word ponder), is THAT why her breath smelled so fruity and like she hit the liquor cabinet and made us rush to the emergency room per the nurse call line to make sure she was okay.

but, the amazing and top of the charts item that stuck out - it can cause skin rashes. could it possibly be that we have maybe an idea of what is causing her rash to never clear up and to cause it? fingers crossed!

Oopsy!

2011-05-23T09:57:00.000-07:00

Sorry things are so quiet. We are busy moving homes - I will be back shortly!

Sports and snacks

2011-05-07T11:20:00.000-07:00

It is bad enough that when you take your young child to a sport's game they are involved in that the snacks provided are highly processed and full of sugar. Same with the drinks. Prior to two of my children being diagnosed with CD and FM, I was okay with it. What is one snack that isn't what I would necessarily feed them. I am not a junk food mom, but I also am not a "no, you can't ever have it" mom either.

So, after Cole and Sugar were diagnosed, we take our own snacks for them. I don't expect them to understand or get their diets and I don't expect them to spend 6 or more bucks on a snack of six items. Or, even to know what they can and can't have.

What I do find frustration with is Sugar's diet and trying to explain that she can't have something. Just a few weekends ago, a mom told me there was gatorade in the cooler and to make sure Sugar gets one because it is hot outside.

Me:   She can't have it, thanks though for letting us know.
Her: She can't? It will give her the stuff back she is sweating out.
(can't help but take her tone as to her thinking I am a "mean" mom)
me:   she has fructmal and she can't have that
her:  oooooh. hmmm.

Sometimes I want to give up explaining. They don't get it. Maybe I should write up a letter at the beginning of school, beginning of sports events, or any other thing she is involved in and pass it out. When I say she can't have it - it isn't because I am being a bitch, it is actually because her system cannot tolerate it. I guess because she doesn't have an "allergy" that needs benadryl or epi pen it is hard to understand.

As they hand out popsicles Sugar will tell them she can't have it. They apologize and mention they should have asked her mom first, and of course, I have to go into the entire explanation again. But that isn't the entire issue. Just because it says there is not HFCS in it doesn't mean she can still have it. There are 20,000 (slight exaggeration) other issues in the ingredients that cause her symptoms as well. And it isn't a "fad" diet or a decrease in her sugar that I am trying to accomplish, it is an avoidance of foods - even healthy to you or I - that she can't have.

So please, when a parent tries to explain that their child can't have something don't assume the worst. It could be for a very good reason! Or, if that child says "no thanks," please don't pressure them to take it - they could very well be responsible for their own diet and know they can't have it.

Letter to Dietician back in February

2011-05-03T11:47:00.000-07:00

I have never been so frustrated or irritated after an appointment than I had been in February.

Dear Dietician and Dr. GI:

I wanted to write in follow up to the appointment that was today. It is often hard for me to articulate my thoughts clearly when in a very frustrating situation.

My daughter begged me not to tell Dr. GI she was sneaking food because she was embarrassed. So, in the appointment I mentioned she was eating things she shouldn't. When you asked my daughter what she eats I did not clarify, and I'm sorry for that. My daughter eats GF breads at home. She does have GF snacks, but some of those items can be found to have brown rice in them and must be avoided. So even though the new protocol is to follow a GF diet, there are still issues with that diet that a FM must avoid. Many people with FM may not be able to handle some of these foods, not necessarily because of the fructose, but because they have to be on the stricter FODMAP diet. Polyols especially factor in here.

When I said I disagree with your list, it is because we have attempted some items and they did not work for her. That was not made clear by me, so I apologize. I felt that my input was not wanted, and I was never asked to clarify why I disagreed. When I did start to explain my opinion, I was brushed aside because you had spent hours looking for information. While I am grateful that you spent the time to look up the information, I have been studying this for over a year.

Studies indicate that the foods you listed have less fructose then glucose, thus making them okay...but FM sufferers have indicated that there is more to it then simple numbers. It's sad, and hopefully with time it will change, but the knowledge is not out there, and it's hard to get out there when even among FM sufferers we find such variation on what works for one and what works for the other. In the end we all end up equipping ourselves as best as possible through the various information out there and then going forward figuring things out on our own.

Also, the level of sensitivity is always the determining factor. If I find my daughter is extremely sensitive then I am going to tread with care...although I am staying away from sorbitol, no matter how small the amount in regard to your comment that "the small amount of sorbitol will probably not hurt her," until she is well enough that I am better able to gauge how she reacts to it. These alternative sugars are often considered "small amounts" but even these small amounts seem to have potent effects on sensitive people.

I feel that my experience and knowledge about this was completely dismissed and that you felt I was harming my child by not just wanting to follow your recommendations when I know from trial and error some of it will not work for my daughter. And knowing she has snuck food and wreaked havoc on her body is not the time to judge whether or not you feel I am following an appropriate diet.

While there are standard guidelines, they are just a place to start, and must be tailored for each individual. If it were that simple, there would not be so many different lists telling us what is safe and unsafe.

with respect,
sugar's mom - macocha

Found a bluberry recipe some FM folks may be able to tolerate...

2011-05-02T09:26:00.001-07:00

Please go to Wendy Cooks and see her post there for the recipe!

thanks, Wendy!

Someone please slap me upside the head!

2011-05-02T09:01:00.000-07:00

I have been trying to catch up on a support board that I belong to and really do love because the tips and advice is ultra-supportive, but with our hectic schedule and sickies in the household it has been a bit hard to do.

I came across a lunch meat discussion. Why did I not think of this before??!! A lot of lunch meats have stuff added to it. Let's see - honey, corn syrup and added fructose. Granted, it would probably seem to most folks not a big deal, but to a fructose sufferer it is; of course depending on their sensitivity. So stay away from processed meats! Go with more natural meats, but also make sure you read those labels too! Apparently, Hormel turkey is one to check out; Boar's head too!

Also in discussion were bananas. Now, my daughter does okay with bananas and this is good. But, I have read that the greener the banana the higher the fructose content - so please make sure you are not eating a banana with too much green on the skin or you could ultimately have a reaction. So watch your banana ripeness folks!

Rash Attack!

2011-04-26T10:45:00.000-07:00

The rash is back. I can always tell when Sugar has either snuck food or we tried something that reacted badly. Given that we have not tried anything new lately, it would seem that she snuck food. Now with Easter being done and over with - it would seem that is the culprit.

I try and keep some Smarties on stock that she can typically have, and gave her some for Easter, I have been reading on a support group that Smarties in abundance can make some reactions come out as well. Too much of a good thing I imagine. Not that Smarties are good things, but when you find any candy that you CAN have - it becomes a "too much of a good thing" item. So, she will have to limit her intake of that as well.

So the rash locations include:

inside of arms (opposite her elbows)
neck
collarbone
behind ears
shoulder blade area

and it has not moved to her face (yet) as it did last time - more specifically her eyelids.

So it is back to all the meds she was prescribed in form of lotions and potions to try and curb the burning, itchy pain and hope the crap can get out of her system quickly. And when she comes to me and says "everyone else gets such and such, what do I get to have," and I respond with "water as you very well know," I can yet again point out her rashes and try and explain that this is why you have to go this route. She will then flounce off and throw herself on her bed and cry that it isn't fair. All I can really do is agree with her and explain over and over again that life has thrown her a curve ball and we need to smash it out into left field so she can get better!

what a trial. so frustrating and makes the setbacks horrible.

Thank you, Jury!

2011-04-13T10:58:00.000-07:00

I was glad to see that they found the man that re-packaged food items as gluten free was found guilty and sentenced to 11 years. Messing with someone's food intolerances or allergies is not a laughing matter! Twenty three counts of guilty is a good ruling for this man who took the health of others and twisted it all up.

I hope he enjoys his visit in prison and thinks about what he has done. I doubt that would cross his mind though and that is the sad part of this case.

Now, I do wonder though - is the guy in Colorado following this case and now thinking...Oh ~~shit~~, shoot, I hope I'm not next. His problem was he BRAGGED about feeding folks gluten items when they asked for gluten free food items. The man that was sentenced boasted that he provided and made these gf items.

It will be interesting to see if anything comes about in the Colorado instances.

Here is the article about Seelig's case outcome.

What a moron!

2011-03-30T11:50:00.000-07:00

I am sure some of ya'll have heard the hype behind the name Damian J Cardone and his hatred towards gluten free items. Feeding folks gluten free because he thinks it is a fad diet because they don't have an "allergy-type" reaction. What a complete ignorant ass! How dare he decide who can and cannot tolerate gluten and take it upon himself to feed it to them.

Here is a phenomenal blog post "letter" to Mr. Damian Cardone from another blogger: letter

And more info on Gluten free life

What an uproar from the gluten free/celiac community.

crockpot cooking

2011-03-24T18:52:00.000-07:00

Do you like to crockpot? Here is a website a friend sent to me that has numerous recipes for the crockpot. It is labeled GF on the ones that are GF but always make sure to check your ingredient list.

crockpot recipe blog

I have also added this to the sidebar.

Ahhhhh, the joys of our life....

2011-03-15T10:36:00.000-07:00

I have one pissed off daughter. Yep, I said pissed. I think that is the simpliest way to explain it. She is 11 years old. A beautiful girl that I wish didn't have these issues.

She is embarrassed over her rashes. they get pretty bad on her arms and neck and she has been more and more apt to wear longer sleeves daily. Since it is raining out - not a big deal. But what about summer months? Is she going to have a worse time in the summer with the itching and rash getting worse - or will it get better? She gets teased about the rashes on her neck. both sides. It is hard enough to grow up in this day and age with how girls can be mean, but add the factor of the rash and it gets 10x worse.

I try and speak to Sugar about her choices in sneaking food she cannot eat, that we are trying to find out what she reacts to, but we get a new setback every time she chooses to sneak something that she should not eat. Her diet is so complex that omitting everything in our pantry is not feasible. Plus, Cole, has different needs and even though I put Sugar on a partial GF diet - there are still some items she cannot have because of the brown rice in it.

Honestly, I am not surprised that she sneaks food, and if it were me or anyone out there, I can imagine they would too. Anyone not following the FM diet can say what they want or feel and that they would do things a certain way - but honestly, try it yourself for a week. You would go crazy and sneak food yourself. I firmly believe this having watched Sugar over the 18 months. top that with her pickyness, she is getting a lot of protein.

Then, top that off with a dietician that has no clue about my daughter's reactions and thinks some foods are okay because ONE research article says it is - well, that is crap. If it was so cut and dry - then there wouldn't be so little information and the information that is out there wouldn't be so jumbled and controversal on what is okay or not. It is NOT cut and dry and everybody who has FM has a different sensitivity level that they can tolerate. Oh, and the dietician wants more fruits and veggies in her diet. Well, no ~~shiznit~~. Again, it is all in her reaction to items that can be tolerated or not. Plus, add in if they are in season or out of season. Can't do canned items, because most times they are canned in juice or in a natural fruit juice of an item she cannot have.

I have come across numerous parents that have emailed me or chatted with me that are just as frustrated or irritated with the statement of "well, what CAN they eat?" Main staples for my daughter are potatoes or rice - both of which she gags and hates. So, she will eat roasted potatoes or fries - so I bake those for her.

When we have pasta night - Sugar gets white rice noodles by Tinkyada and we put butter and maybe a dash of parmasean on it. She cannot have the spaghetti sauce. ~~Tomatoes~~ are a no no. Well, let me rephrase that - DEPENDING on your tolerance levels, one with FM may be able to have a small amount of RAW tomato, but otherwise you cannot have it. Back to the pasta night. Well, that is one meal cooked. Then I make the sauce and meat for the rest of the family. Oh wait, there is Cole. So with him, I either make up a batch of mashed tators and he will put the sauce on top of that - or he will use some of Sugar's white rice pasta (cha-ching - expensive) or we will have corn pasta for him (again spendy). Now, corn is supposedly okay for FMers, but yet again, DEPENDING on their sensitivity - one might not be able to have it.

So, I just made THREE different meals. This isn't even including the garlic bread or plain bread the fam wants with their pasta night. In the past I would buy a french loaf from the store and butter and garlic it myself. NOW, I must have something for Cole, Sugar and for the rest of the family. Usually that entails making from SCRATCH because a SMALL loaf of bread for Cole and Sugar is ~~hella~~ expensive. And then add in that after reading the ingredients for the GF bread, I may have to end up making Sugar's from scratch anyways because it has stuff in it that she cannot have. You know, honey, cider vinegar, etc.

And some folks wonder why I left work to manage my children's care. It is a full time job alone to raise children, but add on two different medical conditions that require a lot more time and effort - well...you can imagine. It isn't easy peasy and you can't just omit sugar for Sugar, but realize there are numerous things out there that can harm her even if they are natural and supposed to be good for you.

vent over.

With Valentine's Day around the corner

2011-02-09T08:43:00.000-08:00

and lots of parents, sweethearts, and friends giving out candy, it is good to be up on what candy is deemed okay and not okay for celiac folks. I ran across this great website, Celiac Family a new blog I will be browsing and reading, and even linking, for great information.

I feel that is is vital to any sufferer of dietary restrictions to have information at their fingertips and don't mind passing along that information and giving credit where credit is due. So thank you, Heather, for taking the time to compile this list.

If you want to check out her specific post regarding what candy is okay or not for Celiac folks, please click here ----> okay or not candy

and for those that suffer FM, the list is, unfortunately, not that long. Sweethearts are okay though.

I can feel the anger

2011-02-04T11:19:00.000-08:00

I have lost track of time, but I do believe that our family is into year three of solving the mysteries of Sugar's ailment(s). Anger has hit me and hit me hard. I can feel it bubble under the skin at times, and I am now at the point of "why her," "why aren't her issues resolved," why is this diet not working," etc. Yeah, I have had the sad, frustrated, stressed, worried stages, but this I know to be anger.

So, what are we dealing with. Well, let's just add them up:

bloating
gas
horrible rashes on her: arms, spots on her shoulder blades, collar bones, eye lids, beneath her earlobes, neck
and these rashes consist of: burning, itching, pain, red, raw, nearly bleeding, tears, wake ups, etc
belly pain
fruity breath
moodiness (or is that pre-teens)
dermatologist appointments with no improvments
neurologist to make sure everything there is fine
allergy specialist
GI appts rescheduled
prescribed meds for SIBO (yet again for the 3rd time)
more and more and more

This will be Sugar's third SIBO infection. SIBO is small intestinal bacterial overgrowth. Here is information at Medicine.net to go over what SIBO is. LINK

I am curious to know my daughter's sensitivity level to fructose. Everything I have researched indicates that FM sensitiviy is up to each individual. Some folks can be okay with things in moderation or certain items in moderation, while others need to stay clear. I am finding that my daughter may be on the higher level of sensitivity and am finding it hard to break down whether or not the polyethylene glycol is causing havoc on her. This is in both antihistamnes she is on for her rash and her rash is not clearning even though she is on a few creams/lotions/ointments for the rash too.

Glycol alone is on the list of "may have to avoid" for FM sufferers, but connected to polyethylene I am not sure of the way glycol reacts. I had a chemical engineer try to explain it to me, but it was way over my head in understanding. So, is the glycol affecting my daughter or not? Maybe - but maybe not. It is in the medicine for the SIBO so it will be interesting how that works. And since we are so limited in our medical field of how much knowledge they even have of FM, getting a different answer by everyone you ask is a high possibility; especially when unfamiliar with FM.

So there lies my anger in dealing with issues concering our daughter. The enouraging part, I did find a news report Sugar's and Cole's doctor did last month concerning FM. Yes, it only touched a small bit on the diet and listed only fruits she can no longer have, but it is a start. It is a start - yes it is.

Foods to Avoid: Thank you, GFRB!

2011-01-31T15:43:00.000-08:00

This list is courtesty of Gluten Free Recipe Box. I came across this list just today and noticed a few things I was not fully aware of. My son started this diet in March of 2010 and of course we are still learning. So, if you noticed things on here that you did not realize either - don't beat yourself up.

You can find the original post here: Gluten Free Recipe Box

I also suggest following or checking into this blog periodically to get more interesting information or helpful recipes/tips, etc.

Gluten-free Giveaway and Review: Tasty Bite Indian Food

2011-01-28T17:13:00.000-08:00

Gluten-free Giveaway and Review: Tasty Bite Indian Food

This competition is courtesy of Gluten Free Carla's website

Have you seen this?

2011-01-28T00:24:00.000-08:00

Tonight I was talking to my sis-in-law (sil) online and she sent me a link. I haven't looked too much at it yet and just skimmed it but decided to put a link to it here. There is a mother load of GF recipes on this site. It will be interesting to try them real soon. I also asked for her mother's Italian pasta recipe so I can try and convert it to GF. Her mom's pasta is a.m.a.z.i.n.g! Light and thin and tasty!

I have not used a straight coconut flour to cook with, so it will be new for me to try this. I almost-always use a blend that was created by Gluten Free Mama. I do know that as any flour that is GF, you will have to spend more money. I don't cringe as much anymore when I shop for these items. It looks like this site I am mentioning has Organic Coconut Flour at 17.99 (US funds) for two 2.2 pound bags.

I am really not on top of it for Sugar's diet and knowing if it is 100% okay to be eating things made with coconut flour, but I am willing to give this a try with her diet. I know that Sugar has to avoid coconut cream/milk, but would like to have more info on this specific flour. When I learn more online I will update what I have learned so others don't have to take the steps to find out.

It is past my bedtime and off to bed I go.

Live and Learn

2011-01-26T13:45:00.000-08:00

I am currently in the mode of writing an article to hash over the steps it took to diagnose my daughter with FM and my son with CD. Going over these memories and then reading statistical data online, I am flabbergasted as to how Celiac can be so underdiagnosed. Not to mention how unaware our medical teams in the US are unknowledgeable about FM.

According to U of Chicago's Celiac Center, it was determined that 3 million Americans have Celiac. Of those 3 million people, only THREE percent of those are diagnosed. This is 3 million people that SHOW symptoms of some sort of Celiac. Three million. That means 97 percent have no clue and can you imagine the damage that is being caused to their bodies because of this lack of information? three million. I believe, if I remember right, there are approximately 2 million folks that have dementia, and 2.7 million folks have rheumatoid arthritis. Or, how about the information of all those 3 million folks could take up the entire state of Nevada. All of this information is available at the website of U of Chicago if you want to read more.

Then, I am reading more and more on Sugar's diet because that diet just makes me shudder. I hate it and need to move past that feeling and deal with it and trust me, I am attempting to do so. I need to get out of my wallowing of how crappy this diet is. But, back to the reading online. I am noticing more and more that folks are leaning towards FM being related to CD in some way. Granted Sugar's endo biopsy came back negative, she has rashes on her arms, neck, face and back that are NOT healing. She is on two antihistamines (need to check those ingredients) and four or five different meds/creams to try and combat the rash. Not realizing how wheat could have such a huge impact on FMers sensitivity levels. Amazing. I was contemplating putting her on a strict CD diet, but I think this has given me the answer to do so. There is more information i am gaining as I do more and more research and browse folk's personal blogs.

But in reality, findng information to help FMers out is seriously lacking. If you feel overwhelmed and clueless and you have been into this diet a short time or a long time, you are not alone! I think everyone I have run across has a feeling of confusion that hasn't gone away. There are a few support groups out there that indicate this to be the case. It is an area that is not well-known. And to validate this point, we go to a very good children's medical facility that I just love their GI department. I love my children's doctor and have referred several folks there that have gotten phenomenal care too. I saw the dietician for CD and for FM. Vasts amounts of knowledge and information on CD. A lot. For FM, maybe two or three sheets and her saying that she just doesn't have a lot of information and most info I might be able to find is online. There is nothing significant I have come across other than the nutritional guide I have linked to the right.

I am hoping as I gain more knowledge I can share it here. Please post too if you have more information out there. I would love to get more and more information for our family and yours!

lack of internet connection makes it difficult

2011-01-18T12:21:00.000-08:00

to keep updated on my blog, so I apologize for the lack of info here.

It is pretty hilarious that I have to keep my children away from the bananas in the house so I can make the best-ever banana bread that both Sugar and Cole can have! The simple ingredients make for a moist, for days too, and scrumpsious snack. I have to tell you, I love this banana bread/muffin far more than a "regular" recipe that I have made in the past. Of course it uses Gluten Free Mama's Coconut or Almond flour, but there is just something about it. I use pure organic cane sugar for Sugar so she can eat it. And since Bananas are on her in moderation list, she can enjoy these as well.

You can find this recipe in Gluten Free Mama's latest cookbook. It is called Coconut Banana bread, but I omit the coconut and make muffins.

I also received an email asking me to link to a website that has 100 GF recipes for kids. I have not tried them, but agreed to link in my resources tab on the side. I am always one for passing on info to any folks that come across my blog. Link is to the side
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I hope to have internet again soon to keep in touch and keep this page updated.

I guess I should have started with this,

2010-12-10T12:56:00.000-08:00

but I had a duh moment. What is fructose malabsorption? Well, the description from Wikipedia is as follows:

"fructose malabsorption, formerly named "dietary fructose intolerance," is a digestive disorder in which absorption of fructose is impared by deficianet fructose carriers in the small intestines's enterocytes. This results in an increased concentration of fructose in the entire instestine...

fructose malabsorption is not to be confused with heriditary fructose intolerance, a potentially fatal condition in which the liver enzymes that break up fructose are deficient....

you can get more detail here: link

This is what my daughter has. She is 10 and it began when she was 8 and took nearly two years to diagnose her. We are still trying to determine some other issues going on with her and she will be going to a few more specialists. Anyways, the dietician explained it as such: Glucose is her large mother ship. She needs to eat things with more glucose that way it will carry the small amounts of fructose over into her blood stream and out of her gut. If she eats things with more fructose than glucose then the fructose will sink her mother ship in her gut and it will ferment and cause SIBO (which she has had twice already). This analogy is a good way to picture it and to help kids understand.

The problem with this dietary restriction is that you have a lot of foods out there that she cannot have because of the levels of fructose. Not only does she have to avoid High Fructose Corn Syrup (HFCS) she has to avoid all substitute sugars too. Dried fruit a huge no no and many fruits are as well. The body is left with minimal foods and with a horribly picky eater, it makes feeding her a trial. I have to say again, as I have stated over and over in some posts, I hate her dietary restrictions. It isn't fixable like an allergy would be - say with benadryl - it is a long process of healing her gut and then seeing if she can handle food again as we reintroduce things - but with her those reintroductions have not gone well.

I wish there was an easier way to feed my daughter : /

more lab work

2010-12-09T13:04:00.000-08:00

Cole's last lab work and diagnosis was in March of this year. He went back today for a follow up - few months late - but he still got in. They are rechecking his vitamin D (which was low prior) and his TTG levels. There is another lab that they will be doing as well, but the paperwork is not in front of me. We hope to see a decline in his levels on the TTG test. that means the GF diet is working.

The appointment went very well! Love, love, love this GI doctor! Anyways, he is growing - gaining weight and "tallness." He actually jumped up a curve on the growth chart - so that is good news. Don't know how tall my son will really be in the end, but hey - he is growing!!

The one concern I have is that he is still very, very tired. I am suspicious about him getting gluttened outside of the home so we are working with the school to get some more info. He has been having salad - but I am requesting (again) the ingredients to the dressing. I told him until we find out - no dressing (blah - huh?). I worry too a bit about cross-contamination in the kitchen when prepping the salad - but will hold off until I get the ingredients. It may be a sack lunch from now on - depends on what we get back.

All in all - it was a good appointment. we go back in another 4 to 6 months for another round of labs and continue that route for awhile.

Now if I could just get my daughter on the road to healthy it would be perfect! sigh.

Another great resource for those celiac folks.

2010-12-09T12:37:00.000-08:00

here is their website

and their facebook page

I did email them because on their page of camps they were missing one that my son went to this last summer. Camp Stealth on Vashon Island. They dedicate two weeks to celiac and diabetic children. Cole had so much fun and wants to go back again. He said the food was phenomenal and enjoyed every bit of it! What a momma always wants to hear!

You can also find the links on the right side under Resources.

busy times

2010-12-01T09:56:00.000-08:00

with the holidays now here, I find my time on the computer less and less. Thanksgiving was a wonderful time. Found a simple pie shell recipe that the entire family raved about and will put it down in the books for the one we will use. fast and easy to make, easy to work with, and easy to put together. only a few simple ingredients and a very delicious taste and texture. quite impressed!

I am finding that I am still frustrated with the diets that my children are on. I think I probably mention this in every single one of my posts. My daughter's is still throwing me for a loop.

lots to do. have to run. will post more later.

Experiment time again

2010-11-02T09:20:00.000-07:00

My mom got me a HUGE bag of Pamela's Bread Mix to try, and I have been busy printing out recipes to attempt. Most of these will require the yeast and resting period, but it looks like it will be worth it on some of them.

There is tamale-style stuffed bread that can be used as a main course, and it looks like I can remove some ingredients so Sugar can still enjoy it. Adapting for Sugar's diet is soooooooooo frustrating because there is little right now that she is able to have and enjoy.

Yum - pop-tart style treats, bagels, different types of dinner rolls to test, cinn swirls, pretzels, and more...

I will review these as I go along - I hope, hope, hope these are winners!

white bread hit!

2010-10-28T14:39:00.000-07:00

we found one, we found one! Sugar can even have this one - which is sweeeeeeeeeeeeeet! Thank you again, Gluten Free Mama! It is her Old Fashioned White Bread Recipe! I even liked it and so did the whole fam! Normally I wouldn't post this recipe, but because this is a rare one for Sugar to have, I will go ahead and post this one to help out all the other FM folks out there!

ingredients:
3 cups mama's almond or coconut flour (I used coconut); and I am sure you can use any blend
1 1/2 tsp xanthan gum
1 tsp salt
3 tbsp sugar

1 tbsp yeast
1 1/4 cup warm milk
1/4 cup butter melted
2 eggs
~~1 tsp cider vinegar~~ I leave this out so Sugar can eat it.

(egg free - use flax method or applesauce for best results)

directions
in mixing bowl, combine flour, xanthan, salt, sugar. mix to combine. make a small well in center with finger. pour yeast into well. pour warm milk over yeast and allow to sit for 1 minute.

add butter, eggs, and vinegar. mix on high speed for 2 to 3 minutes.

spray bread pans with spray. spread batter evenly into pan(s). smooth out top with rubber scraper. make three slashes across top of bread loaf with sharp knife. cover with dry towel and allow to rise 1 1/2 to 2 hours. baste with egg white wash if desired.

bake at 400 degrees for one hour. cover bread the last half hour to prevent over browning.

If you want to make sandwich rolls: measure out heaping 1/3 cup portions into six 4 inch cake pans. smooth out tops with rubber scraper. rise. bake at 400 degrees for 28 - 30 minutes.

cool for 30 minutes before slicing.

recipe courtesy of Gluten Free Mama.

mmmm mmmmm good!

2010-10-26T13:42:00.000-07:00

What do you get when you add sugar, butter, pretzels and chocolate? Yumminess!!!! It smells devine!! I can't try it yet because it is hotter than I can tolerate and it is making me salivate like a dog!

Another recipe from GF Mama hits a two thumbs up before I even have to try it. Granted, this recipe can be a regular gluten recipe too - it just depends on what pretzels you use. That makes it even better in my book! The pictures below are taken right after it came from the oven. My choc chips are both milk and white choc kinds. I did put it back in the oven to soften the chocolates, but they did not melt all the way. Not sure if I want them too. I can probably take a icing spreader and spread them around if I wanted, but I won't do that this time.

When they cool, I will break them off into small pieces and hide them throughout the cabinets. If I don't, they will be gone in a nano-second with my family!

GF Mama - you did it again - Thanks!

good one!

2010-10-26T13:29:00.000-07:00

we tried another recipe out of Gluten Free Mama's new cookbook contributed by the Spanic family who own GJ Joes. They were the strawbery tarts.

I have to say, I was a little nervous when they came out of the oven and tried one of the "shells." I used a mini cupcake pan so I could make individual ones; plus it is easier to use my Pampered Chef mini scoop in a small cupcake pan. perfect size. Anyways, it was okay, but I was like oh nooooooo.

Well, then I make the topping. Let it cool in the fridge and took some whipped cream out of the freezer. Asked Mister if he wanted to try it and I served him up. He gobbled it down. I tried it. With all three - the berry topping, shell, and cool whip it was delicious!!

Cole and his bro devoured them too. Honestly, I was hoping to sneak some this morning for breakfast and they were all gone. So, that alone shows it was a major hit in our house!

we found biscuits!

2010-10-24T18:45:00.000-07:00

other than from the bisquick box. waaaahoooo! We used a recipe from Gluten Free Mama's new cookbook, In The Kitchen With Gluten Free Mama.

I have found that when I roll out dough with the rolling pin on wax/parchment paper, I almost always roll it too thin. This recipe calls for 3/4 of an inch and now I know why. It will barely rise - which is fine, but not when you roll it to 1/4 inch or 1/2 inch. I think I need a ruler in the kitchen. It was my own error on this part of it - but they were still very tasty!

What is even better, Sugar could have these. No sugar or honey was called for and that was an added plus!

So far, the recipes I have tried that Gluten Free Mama has provided in her cookbooks have been a hit in our family! I have even substituted the featherlight mix in some of the cookie recipes when I have run out of her own blends. Still good. These mixes will become a staple in our home!

thank you thank you thank you!

YUM!

2010-10-20T09:19:00.000-07:00

We traveled to Danville, Cali this last week for a family member's wedding. What fun! As I was walking around trying to find a place to get my eyebrows waxed (the things we do for beauty...), Mister and Sugar walked around browsing all the cute shops in the downtown area.

As he looked up....he saw a sign that said Miglet's gluten-free Cupcake Shop. He was like...sweet (no pun intended)! Went in and bought a sample pack of 12 mini cupcakes. I believe it had red velvet, lemon blueberry, funfetti, coconut, and chocolate. My fave the red velvet - they were sooooooooooooo delicious!!! Cole's fave....all but the coconut. So two thumbs up from him. Too bad they are 12 hours away :(

I am glad to see that there are more and more bakeries, stores, and restaurants catering to the needs of the GF group - but there is still so much more to go.

Thank you, Katie Taylor (owner of Miglet's) for seeing a need and pushing ahead with your business to see that we start! Very much a yummy treat!

things are going...

2010-10-08T10:52:00.000-07:00

a bit better than a month ago. I am starting to feel comfortable in the kitchen again and don't dread it as much as I did prior. Sugar's diet still has me panicking a bit. Since I have been off work, there has been a huge reduction in her bloating, which I imagine is because I can control her diet and what she eats and now unable to sneak.

I am still at the overwhelmed stage and have a lot of things to consider when it comes to returning to work or continuing at home to care for my children. It is a very hard thing to consider and find that friends and even some family have a hard time understanding how much stress and time this entails. I understand that it is hard to fathom and would even think what is the big deal if I wasn't going through it. But I am going through this.

Imagine being told that what you have being doing the last umpteen years is wrong. That the flours you have cooked with are considered poison to your son's body. You have to learn the blends of flours and how much xanthum you have to use to get it correct. That apples and pears, even oranges and tomatoes, are considered evil to your daughter's system and there is very little out there that your daughter can have. No ketchup, no barbeque sauces, and most fruits and veggies are off limits.

But, I am getting stronger. My husband is supportive. My counselor is supportive (laugh). And the friends that know and understand are supportive.

I will share recipes soon. There are some good ones I have tackled for celiac. Still looking on the fructose issue. sigh.

So it is hot and humid where I be cooking today,

2010-09-27T17:55:00.000-07:00

but I am trying a new recipe. As I type this and drink my ice water, my dough I mixed up is sitting on the counter "resting" for two hours. I must have gave it a severe beating...(my odd sense of humor here).

Anyways, it is for a sweet bread and calls for honey, so Sugar cannot have it but maaaaaaaaaaaybe in small bites if I watch her. Not too sure yet. This is the only sweet that went into the recipe. It is Gluten Free Brioche dough. Can use this as a base for many pastries for my son too.

My plan is to make one loaf of sweet bread (yummy) and one batch of cinnamon rolls with it (double yummy). I am going to look through the other parts of the book for another dessert to try with the other third of the dough. My mother made the sweet bread, so I know it is good, I just have to attempt it myself.

My husband asked, "which are you making first - bread or cinn rolls." Ha ha. Wonder which one he wants?

Since I have been home and monitoring Sugar's intake, her bloating has reduced greatly, and I am thrilled!!!! Cole is starting to feel better and more full as well. I hope that a routine can be set into place for when I return to work. I still wish there was more out there in regard to recipes for ease for Sugar girl.

another day

2010-09-21T09:58:00.000-07:00

Still frustrated, but slowly working myself out of the hole of doom. I went to a couple of the links and registered that were provided to me by Bern in the post below this one (thank you). I am hoping to grasp more info as I search the internet and am thankful for any information out there.

What I find interesting is that Australia is so much more ahead of this game than the States. Wish there was some way for us to all work together and get the information out there. I find in reading posts from other sufferers that the frustration is for all in this diet. It is bland. It is irritating. It is a head-banging moment - or two; more like 2,000.

As stated before, Sugar is a very picky eater. Finding her foods that she can eat are so frustrating. I found a recipe for Lemonade Scones. It calls for just FOUR ingredients. Some have tried it with GF flours and although they didn't rise like regular self-rising flour - it was still yummy. I just cannot recall if I can be safe making it with the cream or if that is a no-no, so I have to go research that again. So any time I gear up to make Sugar some dinner or snacks, I find myself heading back to the computer and internet to see if that indeed is okay for her to consume. Under "dairy" it states no on sweetened milk products - and isn't sugar added to make cream? Ugh. So, can you make your own cream? Hence the ultimate frustration.

So, as I sit here and research and vent, I hope to stumple upon more information that will help me feed my family successfully.

Honesty is key

2010-09-16T13:00:00.000-07:00

I HATE these diets. Yep, I said it. Now that I recognize that, maybe I can finally move on...fingers crossed.

Tears. Tears are what fall from my eyes almost every night. It.Should.Not.Be.This.Hard. It shouldn't. I have been searching the web all morning for recipe and food ideas for Sugar so she can eat. She has been sneaking food she should not eat and let me tell you....it shows. When she eats a diet high in fructose she gets all drama like! Meltdowns you would not believe. She is 10. I know the urge to have food and sneak food is there - but her body cannot tolerate it and then we end up having to start all over again. It is clearly a head-banging against the wall moment.

For her these are some of the limited items she can eat right now:

potatoes (she hates)
rice (she hates)
oatmeal (she hates)
eggs
bacon
gluten free bread or regular bread if she can tolerate wheat
gluten free pancakes or waffles (likes with peanut butter)
rice cakes
fries (no sauce to dip though)...blah plain
rice crackers
potato chips (limited)
cheese puffs (limited)
bananas
limes or lemons (who eats these plain??)
water
white grape juice (limited)
meat - no seasoning or sauces
milk (no choc or strawberry)

hmmm...I think that is the start of the diet. Then after a few weeks we can slowly start introducing some items to see if she can tolerate it. Can you imagine feeding a 10 year old picky eater this? My daughter is going to staaaaaaaaaaaarve!

Now Cole's diet is horrible too, but he has so many more options. It is just the expense for both diets that are killing me. Plus, everything for Cole is totally made from scratch. No quick dinners for us on sports nights. I have to make sure I have our meals planned out - but you know what - I am not at that point yet. No where near it.

I am praying we win the lottery so I can hire our own personal chef that knows all about this to come cook our meals. These diets have wreaked havoc on our lives and have made me feel inadequate as a mother. But, being who I am, I have got my venting out and will hopefully move forward starting today...well, after I research more.

Have I told you lately how much I hate these diets?? Very frustrating!

kids with celiac and activity

2010-07-23T18:28:00.000-07:00

an article came out today. short, sweet, and to the point. just a good refresher to have!

UPI.com article

talks about celiac kids really need outdoor play and vitamins. have my son be low on his vitamin d, it is a really good reminder!

Can't miss the Oreo Type because of this recipe!

2010-07-16T20:44:00.000-07:00

My friend sent me a link for some Gluten Free Oreo-type cookies! We put them to the test tonight! First you have to make the "cookie" part of the cakester. I just followed the recipe, using beaten egg instead of egg substitute, and smashed them flat with a glass. I did roll the dough into small balls and then flatten those instead of doing one big log and cutting them thinly.

the photo above is after the cookie pieces came out of the oven. they had to cool. then I whipped up the filling and put it together. It passed the test of Cole and of his little bro! 20 thumbs up if they could!

I will repeat a huge hit!

the recipe is as follows:

dough:

1 cup rice flour

1 cup tapioca flour

1 cup cornstarch (can use 1/2 cup arrowroot and 1/2 cup rice flour)

1 tsp xanthum gum

2 tsp egg substitute (some mentioned using flaxseed instead)

3/4 cup cocoa

1 tsp baking powder

1 tsp baking soda

1/2 tsp salt

1 cup butter

1 cup sugar

1 egg

1 tsp vanilla

1 - 2 tsp milk

mix dry and set aside. cream butter and sugar until light and fluffy. add egg and vanilla - beating well. add dry ingredients in thirds. if too stiff, add the milk. shape into walnut size balls and flatten. cook 10 mins at 350 degrees. cool completely.

Filling:

2 cups powder sugar

3 1/4 tbsp shortening

1/4 tsp vanilla

2 tbsp hot water

mix and spread onto cookie piece and lay other piece on top. you want the filling somewhat thick - but not too much that you can't spread it. I doubled our batch of filling to make sure we had enough as we like ours thicker. oh, and if you want a softer cookie - bake for 1 minute less.

ENJOY!

trouble replacing campbell's cream of soups?

2010-07-05T17:53:00.000-07:00

I am finally relieved to at last have a cream of whatever soup to replace all those recipes I would use where we would need campbells to be the base. I now keep the mix in a container with the directions sharpie'd right onto it!

To make the mix:
1 cup dry milk
1 cup white rice flour (I use Bob's Red Mill)
2 tbsp dehydrated onion (I haven't added to mine yet)
1/2 tsp pepper
1/2 tsp salt

Just mix and store this!

When ready to use:

1/4 cup mixture
1/4 cold water
1 cup hot chicken broth (GF of course)

Cook and stire over medium heat until thick and bubbly!

I am thrilled at finding this! We have loads of quick meals that call for a cream based soup and we were disappointed we were on a hold for making our recipes for Cole until we came to this!

Enjoy!

Tsk tsk Mr. Cole-man!

2010-06-11T10:48:00.000-07:00

So, a minor setback in our household. Cole had been sleeping after school again, and I was curious at what could possibly be setting him back into pre-diagnosis behavior. And, when I say sleeping after school, it is NOT your typical afternoon catnap. It is a full-blown sleep all night, come home from school, and sleep until the next morning or pretty close.

I had to go and add some funds to the kids' cafeteria accounts for their school and decided to check up on their purchases.

DING DING DING! We found it! Chocolate Malt Shakes! OOPS! Seeing as he has bought a few of them over the last week or two, more specifically one yesterday, I dialed up the school VP and had him talk to Cole quick. VP actually grabbed the product, pulled Cole out of class, and explained to him and showed him the ingredient list and that is was on the "avoid" eating list (all mental lists we have).

Can I say that I just love his school! They work with me, I work with with, and we get Cole the food he CAN eat and help educate him on what he CANNOT eat!

Phew! That was close! I know we will have many of these occurrences over the years as he is just entering teenager-hood and will want to eat stuff he cannot, or even not realize he cannot. Malt just doesn't stick out like a sore thumb in relation to Celiac Disease. Now he knows.

And here is a quick treat...

2010-06-05T19:59:00.001-07:00

seeing as rice krispie treats are now a no-go (bummer)...we have made our own similar treat.

3 tbs of butter
1 bag of marshmellows

no melt and mix together with RICE CHEX and lo and behold you have rice "crispy" treats!

and to add a bit of an extra yummy treat - you can mix in choc and pb chips or white choc chips. these are good!

YUMMY!

So, it has been a couple months, and how things are going...

2010-06-05T19:37:00.000-07:00

Where to begin? Cole's moods go up and down as he deals with the issues he personally has since being diagnosed with Celiac. Can I blame him? No. His grades took a downward curve and thankfully, he has pulled them back up again with a few weeks remaining. He also got a penpal to correspond with that I am thankful for as he shared a bit with her, and I truly believe that helped a great deal! So, as a mom, watching my son go through the trials of coming to terms with Celiac has been really hard.

Jealousy over his friends eating what they want has also been an issue with Cole. He has mentioned more than once friends "bragging" or making obvious eating motions when lunch time comes around and they gobble pizza and cookies down. Thankfully, he is getting better at dealing with it and not letting it bother him too much. He still has his "not fair" moments, but who really wouldn't.

I have found a couple recipes, thanks to my friend, that have really hit the tummy in a good way! One being snickerdoodles. Granted, to me they have a teeny tiny aftertaste, but to Cole - who has been on the Celiac diet two months now - there is no noticable issue. He does like them warmed up in the microwave - says they are better. Enjoy!

Snickerdoodles!
3/4 cup veggie shortening (can use butter instead)
1 1/2 cups sugar
1 tsp vanilla
2 eggs
2 cups sorghum flour
1/2 cup tapioca flour
1/4 cup arrowroot starch
2 tsp cream of tarter
1 tsp baking soda
1/2 tsp sea salt
2 tbsp sugar
1 tsp cinnamon

preheat to 375. cream shortening and sugar in large bowl. beat in eggs and vanilla. in separate bowl mix together sorghum, tapioca, arrowroot, cream of tarter, baking soda, and salt. pour dry ingredients into wet ones and beat until well mixed. roll into balls the size of a large walnut. combine last two ingredients in a bowl and then roll balls into it to coat. bake 10 to 12 minutes on a greased cookie sheet.

Now, I baked half of mine right away and then stopped after I coated them for the other half. I then placed the unbaked ones in the freezer and Cole can pop a couple at a time in the oven when he is hungry for a snack.

Doctor-up the blah yellow cake mix!

2010-04-28T06:55:00.000-07:00

Betty Crocker came out with a yellow cake mix that isn't all that good by itself. In the past, I would make a pumpkin cake/cupcake with the regular cake mix and thought I would see how it turned out with the Gluten Free one. Not bad - even Cole was okay with it. If you want to try it out, here it is:

1 box of yellow cake mix (gluten free)
1 cup pumpkin (not the pumpkin pie mix)
1/2 cup water
1/3 cup veggie oil
4 eggs
1 1/2 tsp pumpkin pie spice

1 container of betty croker cream cheese frosting (I am sure any brand will do)

1. heat oven to 350 (325 for dark or nonstick pan). place paper cups in the muffin pans
2. in large bowl, beat cake mix, pumpkin, water, oil, eggs, and pumpkin pie spice w/ electric mixer on low for 30 seconds. beat on medium speed 2 mins, scraping bowl occasionally. put into muffin pan (I use a cake pan)
3. bake 20 to 25 mins or until toothpick comes out clean. cool completely 30 mins
5. frost and grub on em!

Cole tried this and liked! So, a good way to take a mediocure gluten free cake mix and turn it into something a lot better. I did notice that it doesn't rise as high as the "normal" mix. so don't sweat that!

Enjoy!

part II of how we got to where we are...

2010-04-20T08:47:00.000-07:00

After the cardiologist appointment for both an ECHO and EKG, we were discharged and good to go. It was a huge relief that all was looking good there, but it was also a frustration because we still did not know what was wrong with Cole.

That next day, we got a call to again go back to the cardiologist so we could do an exercise stress test to rule that out as well. We did this and found Cole's heart to be in perfect condition. In fact, he is in a class of about 10% of folks (think Lance Armstrong) of being in the shape of an elite athlete. So if he continues to keep in good physical shape, he could potentially set new records in sports!

Our next appointments were with the ENT doctor to rule out tonsil and adenoid issues and with an infectious disease doctor. The infectious disease doc was to be seen for his immune tests coming back a bit low. Cole was also set up for a sleep study to rule out sleep apnea and maybe some other sleep issues he could possibly have.

So, after all those appointments:

Cardiologist ~ all okay
ENT ~ all okay - yet he seemed to have constant congestion
Sleep Study ~ all okay
Infec. Doctor ~ ran more tests

At this point, Cole was so sick of going to doctors!

A good book to pick up!

2010-04-20T08:29:00.000-07:00

granted, I have not finished it yet, but so far what I have read is very interesting and informative. My 12 year old son could actually pick this book up and read it too.

You can pick up this book at Amazon through this link : (please ignore the click to look inside...lol)

Inside this book you will find information for websites, books, recipes to help you on your journey through celiac. It has, so far, been rather helpful.

2,000 thumbs ups here!

2010-03-30T06:58:00.000-07:00

Betty Crocker came out with new a few new products that gluten-free followers can really, REALLY enjoy! The one we have tried so far is:

We have the chocolate chip to try yet and the chocolate cake mix. I am excited to try the yellow cake mix with a pumpkin recipe I have to make the best ever brownies. If that works - I will post the recipe here.

The above mix is, to our family, better than BC's regular brownies. Do not walk - but run to the store to pick these up and try them! Even Betty Crocker's website has a few reviews regarding this mix. And, of course, information about the mixes.

Thank you, Betty Crocker, for allowing GF folks to enjoy your product! Now please add coupons for these! :)

2010-03-22T16:07:00.000-07:00

A few folks have been wondering how I got to the point that we are now.

It began a few months ago. Well, in reality, it began a few years ago, but I did not know the things then could be associated with celiac.

Cole started junior high this last fall. He began football and then the season ended. All of a sudden Cole was getting more and more tired. He was sleeping all night, during class at times, and then after school for a few hours, and at times until the next morning. Sports were over so it made very little sense to me.

I counted it as a growth spurt. he was at the age that he would be growing and figured he was exhausted from that. After watching for a few months, I decided it was time me to take him in to his pediatrician. A perfect excuse arose when he complained of stomach pain. This started the journey of trying to figure out what in the heck was wrong with Cole.

We did labs and a urine sample. We found that his blood pressure was borderline again. His urine came back with sugar in it, and his blood test, I believe, this time around was okay. Trying to recall all that they tested first time around. Iron and thyroid for sure, in addition, they did some kidney testing labs and A1C.

Cole was referred out to the cardiologist to check on his borderline bp issue and then go from there.

cheerio snack episode

2010-03-22T11:18:00.000-07:00

Mister left a bag of those cheerio snack mixes out. Sugar and I were sitting on the couch watching tv and Cole comes in, grabs a handful, and before shoving in his mouth he looks at me. I was getting ready to stop him, but he stopped in the nick of time.

cole: ugh - can I have these?

he grabs the bags and looks at the ingredients.

cole: this sucks - first ingredient is wheat flour

All the while I was looking at him. I smiled.

Cole stomps off and grabs a banana.

I can't help but be proud that he stopped himself before putting it in his mouth and read the label. We are only on day 5 of a diagnosis. Gone are the days of grabbing whatever he would like to without thinking of the consequence (i.e. pain).

who we are

2010-03-20T17:15:00.000-07:00

Hi!

Welcome to my blog. My new one. My son, we will call him Cole, was diagnosed with celiac disease on the 18th of March, 2010. To say that I am still a bit overwhelmed is an understatement! I am truly faaaaaaaa-reaked out and wondering how on earth I can do this so we (my husband and I) can help him.

You see, I have a family of six children full time, and a family of 8 part time. I already deal with a daughter, we will call her Sugar, who is fructose intolerant. My husband, Mister, is lactose intolerant and I really, really believe he has some type of wheat intolerance; maybe even celiac himself.

Right now I/we are in a stage of what the heck are we going to do. Do we test all the family members? Do I just put them on gluten free? Would it be easier to just convert the whole family while still modifying Sugar's diet? How are we going to afford the extra expense in food? Is the bread that nasty as I have heard it can be? basically....OMG - HOW ARE WE GOING TO DO THIS?

If you think of gluten and wheat free - you say, but it is IN everything! It isn't. It is in about 99% of things...ha ha! No, it is in a lot of stuff, but there is quite a bit that I am learning and hope to share with you in my struggles from day to day. Not that I will post daily, but I will definetly try to update when I have fantabulous info to share!

If you are just recently diagnosed as well, I hope to at least pass on ONE helpful tip! Ask, ask ask! friends, co-workers, familes, etc. Ask them if they have anybody they know with this disease. ask them to pass on any recipes or tips that will be useful! My friends have kept me grounded and put bandages on the holes in my head so they would not start exploding with all the info I was trying to overload into my brain. And, cry. Cry to release your stress so that you can move onto the next day and tackle whatever comes and move successfully through every day in the future.

Please come back and reply to comments or email me info you think I should post about. I will post recipes that I have tried and passed the test of ALL EIGHT family members. I just tried one today (my first) and it passed Sugar's test (who is the ultimate picky eater) and Mister!