Dh, Celiac Denial

[FreeTime]

Mu daughter has DH but had no symptoms of celiac. She had an endoscopy and I am a little confused by the results. Actually, I couldn't understand them as the Doc didn't speak very good English. He just said no moe gluten. So, if the rash is the only symptom, if she eats gluten is she still damaging herself internally? Can someone please tell me what the longterm effects of celiac disease are if she doesn't follow the diet? She has been on it now since December and I do not plan on taking her off of it. But I read on a British website where the patients with DH just take Dapsone (I don't think kids can) and still eat what they want. Is this safe?

[tarnalberry]

No, it's not safe, but doctors are only starting to realize this. They think the diet is SO hard that they can't fathom putting patients on it, so they say to just use steroids instead?! Crazy. Yes, if she had DH, she has celiac. It's a dermatologic manifestation of celiac disease. (It's caused by IgA deposits from the celiac reaction in the skin.) And yes, she needs to remain gluten-free. If she doesn't, she will get damage and the other long term effects, including nutritional deficiencies (leading to stunted growth, anemia, and osteoporosis, among other things), possible neurologic problems, other immune problems, digestive system cancers, and - on average - a ten year shorter life span, not to mention a lower quality of life.

[Rachel--24]

Yes, as Tiffany already stated she needs to be on the diet.

Just because DH is the only symptom presenting itself at this time does not mean it will stay this way. The damage is still occurring internally. If she were to go back on gluten the constant stress that would put on her immune system can lead to much greater problems. In my opinion the Dapsone would only be helping with the DH but what about all the other problems that would still be occurring internally? Masking the symptoms is not wise....staying on the diet is really the only way to avoid further complications.

[FreeTime]

Thanks for the comments. I am concerned that we are not being careful enough with her diet. For example, we eat out frequently and now I am seeing on these boards that some people never eat out. I always ask to have a manager help us, ensure that the gloves are changed, make sure the fryers are dedicated, etc. I check the ingredients and call the manufactures, but I am unsure of whether it is okay for her to eat something that does not contain gluten if it is not made on a gluten free line. We have a long way to go!!

[Ursa Major]

As Tiffany and Rachel already stated, your daughter absolutely needs to be on the gluten-free diet. Dapsone just helps with the symptoms (the rash), but does nothing to fix the cause (not being able to digest gluten). It is a very powerful medication, that is extremely hard on the liver, and may eventually destroy the liver.

Mind you, it may take up to two years for the deposits under the skin to clear, meaning that she may get outbreaks of DH for that amount of time (but they will not likely be as bad).

If your daughter will keep eating gluten, it is very likely that she will end up developing other autoimmune conditions down the line, and the likelyhood of eventually getting cancer would be very high.

As for eating something not made on a gluten free line, that's a hard one. Some people are extremely sensitive to even the minutest amounts of gluten, while others have no problems with that. It is best to avoid these foods when in doubt.

But it sounds like you do everything right when eating out. The only reason why I have stopped eating out is because I have so many other intolerances, it just gets impossible. I would go out if it was only gluten I had to avoid.

[tarnalberry]

The stuff you list, avoiding things produced on shared lines, avoiding eating out altogether, and so on - those are the truely sticky spots, and come down to a personal decision. There is no "ANSWER" to what to do in those situations, and you have to feel your way through them. I personally choose to eat out, selecting my food conservatively and carefully, but I do minimize how much I eat out. I also will eat some things made on shared lines, but not from some 'trouble' companies and some items more prone to contamination than others (like sticky dried fruit).