Does your school help you out?

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

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"

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...

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!

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

Sports and snacks

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

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