Help! I'm On The Verge Of A Nervous Breakdown!

[Cam's Mom]

Hi All!

I know I've been here whining before but now I am feeling really deparate and need some help . . . please, any advice!

Background: My daughter was diagnosed almost 1 year ago with tTg of 181 (normal <19) and positive biopsy. 7 months later tTg of 78 (and condescending Dr. who says we don't understand the diet). Just had blood work done again and the results are as follows: IGA = 8, IGG=10, tTG = 86. (all <19=normal).

I'm stumped and really scared that the numbers are still so high. The good news is that she has grown 2+ inches in the past year and gained at least 5 pounds. She rarely ever complains of any stomach pain and shows no symptoms. When she was very sick pre diagnosis we could tell that she was not absorbing food well because she is diabetic and when she ate sugar her blood sugar did not go up (indicating that it was not being absorbed). She has not had that problem since starting the diet.

This is what she eats:

every breakfast: is a Van's gluten free flax waffle w/maple syrup (except the occasional gluten-free pancake from scratch) and milk. every lunch is a peanut butter and jelly sandwich on homemade gluten-free bread (use authentic flour and Ener - G). Dinner is generally Tinkyada pasta, fresh veggies, ians gluten-free nuggets, rice, beans, mission corn torts, cheddar cheese, eggs, in some combination. Snacks are usually, environ kids cereal, fresh fruit, lots of home made gluten-free baked goods, muffins, cookies, etc. Haagen Daz ice cream, Green mountain corn chips, glutino pretzels, veggie booty, friendship cottage cheese. she drinks milk and apple & eve juice.

That is pretty much all she eats. She never eats anything except what we prepare for her. Our house is 100% gluten free including cat/dog food. She only uses California Baby soap and lotion and I have checked on her mulit vitamin (solgar, I think) and it is fine. All kitchen utensils including toaster have been replaced. At school she sits at a desk at the end of the lunch table with a little gap for crumbs to fall through.

What are we doing wrong? Why would the number go up? I am thinking of taking her to the Celiac clinic in Boston but it seems like we should be able to get the number down with the diet and there isn't really anything a different doctor could do to help.

Any ideas? TIA

barb

[AmandaD]

I would suggest you meet with a hospital-referred dietician or another individual who can help physically go through the diet with you.

There are quite a few different ways gluten can get into the diet and it is probably best to make an appointment with a professional who can help you out. Our local support group leader here can even come to your house and help you figure things out...

Just a suggestion...

[key]

I would question Van's waffles. If this has been a staple in her diet almost everyday. THere have been MANY people on here that have been gluttened and sickened from their waffles. I don't know if they test them or not. They make alot of wheat products too. Maybe some other people will let you know what they think. I don't eat Van's waffles, because so many people said they reacted to them.

Otherwise, I don't know what would be causing her levels to be elevated still.

Monica

[Ursa Major]

If I remember right, the tTg indicates an immune reaction to SOMETHING, while the other tests are more specific to celiac disease. So, she obviously has celiac disease, no question about that. But have you considered that maybe she could be intolerant to dairy as well, and that the numbers won't go down until you also eliminate all dairy?

Personally, that is what I would try, and it may just be that missing piece of the puzzle. Soy could be another suspect.

I hope you figure it out, it must be very frustrating to know that somehow you are still missing something.

[Juliet]

Also, which Enviro Kids cereal are you feeding her? It's my understanding only four are gluten free: Gorilla Munch, Panda Puffs, Koala Crisp, and Amazon Flakes.

[Cam's Mom]

Thank you, thank you for listening and for your feedback.

Have others had problems with Van's waffles (other than getting them down your throat )? She eats very little that is packaged and what is packaged usually says gluten free on it, such as Glutino, Tinkyada, Ener-G, etc. (except for dairy and juice). Yes, we only eat the gluten-free envirokids cereals. I feel like I spend half my day researching products and the other half cooking! We work with a whole team of dieticians because managing celiac and diabetes together is somewhat complicated - so I do feel somewhat knowlegable at this point.

Two thoughts - one is, can tTg be indicative of another auto immune response or is it specific to gluten? If it could be another auto-immune response, then I wonder if it is high because she has diabetes which is also auto immune? and the other is, how long does it take for anitbodies to get out of the body? Perhaps like everyone else she gets glutened from time to time but those antibodies don't clear out of her system in time for these blood checks.

Are other people following up and getting blood work done after diagnosis? If so, do you truly get a "normal" number? Maybe I should just throw in the towel and just keep doing our best and stop looking at the numbers. There really seems to not be much else I can do.

Thanks again!

Barb

[gfp]

I would question Van's waffles. If this has been a staple in her diet almost everyday. THere have been MANY people on here that have been gluttened and sickened from their waffles. I don't know if they test them or not. They make alot of wheat products too. Maybe some other people will let you know what they think. I don't eat Van's waffles, because so many people said they reacted to them.

Otherwise, I don't know what would be causing her levels to be elevated still.

Monica

I don't know Van's waffles but I'd definately question anytihng that is a staple.

Same for dairy or soy...

If you are eating anything often and that product from time to time gets contaminated or just bad QC then the chance is you will get it... and if you buy in bulk, probably quite a few.. it might just be a slight amount of CC (even CODEX gluten-free) but if you eat the same thing often then chance is it will build up...

Is she old enough to be cheating?

[Cam's Mom]

Yeah, I think you're right. I will cut out the Van's and just put a batch of homemade waffles in the freezer weekly - they taste better anyway. Premade are just easier because we can get a more accurate cab count, but clearly not worth the risk.

She's almost 7 but definitely not cheaing - poor kid has so many adults watching what she eats, especially since if she eats any carbs that aren't accounted for in her insulin dose her blood sugar would sky rocket. She's pretty much afraid of most food at this point with the exception of the world's most delicious chocolate chip cookies that we make (of course they are gluten-free - but you'd never know)!

thanks!