the trial and errors of dealing with a diagnosis of celiac disease and fructose malabsorption. follow our journey through diseases our family is unfamiliar and frustrated with.
Ahhhhh, the joys of our life....
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.