Worried about gluten challenge

[Shyofthemoon]

Hi everyone, I've been reading on this forum for a while now and just now decided to join. I have always had some issues with wheat/gluten. When I was younger I would get very itchy in my throat and ears after eating gluten. This still happens. While pregnant with my second baby I started getting these incredibly itchy bumps on my inner elbows and inner knees. The doctor said it was probably eczema and gave me a steroid cream that did nothing. I just ignored it for as long as I could. Then it got worse. After having my baby the little bumps went away but then I got big welts behind one knee that would burn and itch like crazy, turn into a ring shaped with a plain flat center and then become very flaky and then heal to a purple stain that stays for months. It's definitely not ring worm, that was my first thought too but doc said no. I believe they're hives but I've tried every kind of cream and nothing has worked. I realized they'd come up about 30 minutes to an hour after eating gluten. So I stopped eating gluten and they healed up in a couple of weeks. I also stopped having horrible headaches all the time, my skin looked better, etc. But if I eat gluten on accident it flares up again. So the doctor told me to eat gluten for two weeks and then we did part of the blood testing... Obviously now I know that wasn't long enough since I'd been doing my best to be gluten free for about six months. It came back too low to be celiac. Well now I've been gluten free for about a year and they're going to do the test again. They set the appointment for Sept 30th. I've been eating gluten for about six weeks now and I feel BAD. The hives are back on insides of both knees, one hive on each butt cheek, headaches daily, my face and eyes will be very puffy and itchy when I wake each morning, face is broken out with acne constantly and I'm 30 lol, I'm constipated until I suddenly have horrible cramps and diarrhea, nauseous after eating, rageful and moody, more tired than I can ever remember being, heartburn that's so bad it makes my teeth throb, and now I'm going on day five of feeling like I have the flu but no fever. My head feels like my brain is swollen and stinging and I feel cold and so so tired, with itchy eyes and stuffy nose. Nobody around me feels sick at all and it's like I keep expecting to get a full blown illness but then I feel a little better and then it gets bad again. I'm sorry for the novel/rant, to get to my points, does this sound like celiac to anyone? And do you think I've let this challenge go long enough this time to call the doctor and try to get a earlier appointment? These are the symptoms I get when I get gluten but they just keep getting worse and I'm actually starting to get a little scared because I feel so horrible. I don't want to just give up because nobody in my life takes this seriously with just my rash and no official diagnosis, they sneak gluten telling me after I eat it that it was only a little or don't worry they cooked it and killed the gluten, AGH! Plus I have kids and I feel like I need to know for my sake and theirs in the future. Anyway, thanks in advance

[Shyofthemoon]

Also, I was tested for wheat allergy and it came back negative. I react badly to barley as well (rash on face and neck).

[trents]

Welcome to the forum, Shyofthemoon!

The Mayo Clinic Guidelines for the pretest gluten challenge are the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the day of serum antibody testing. Cutting that short may invalidate the testing. I know, it's tough.

There is a skin rash condition known as DH (dermatitis herpetiformis) that some celiacs get that is a definitive condition for celiac disease. If you have that, you have celiac disease. It has a characteristic appearance with little blisters. If you got that rash biopsied during an active breakout and it turned out to be DH then that's all you need.

Another alternative is to have an endoscopy with biopsy of the small bowel lining. This is the most reliable diagnostic test for celiac disease if it is done correctly. Damage to the small bowel lining caused by celiac disease can be patch and if the one doing the scoping does not take several samples from different areas it can be missed. However, the beauty of this diagnostic procedure is you only have to be eating gluten for two weeks.

I should also say that getting an official diagnosis does not automatically ensure your family and friends will take your need to avoid gluten more seriously. Some will still be skeptical and uncooperative. 

[Shyofthemoon]

I've been on the challenge for 7 weeks and got my test moved up to Wednesday so 7 & 1/2 weeks. The symptoms have made daily life a struggle, neurological stuff has especially ramped up in the last week. Do you think that'll be good enough? I'd hate to do all of this for nothing, I just have two small kids to take care of and I'm really struggling at this point.

[trents]

I think 7.5 weeks should be sufficient. Kudos for tuffing it out. 

[Shyofthemoon]

Yeah it's not been fun, I'm just worried that it'll come back negative and I'll never really understand what's going on with my body I guess. They really need to figure out a better way to test for this lol.

[trents]

But don't lose track of the big picture. You already know that gluten is the culprit behind your health issues. You have proved that to yourself because when you go gluten free all those issues get much better. Regardless of what the test turns up, you know this to be true. It is also possible that you have NCGS (Non Celiac Gluten Sensitivity). The two share many of the same symptoms but for NCGS there is no test. Celiac disease must first be ruled out and symptoms need to respond favorably to the withdrawal of gluten from the diet in order to receive a dx of NCGS. And NCGS is 10x more common than celiac disease. The antidote is the same, total abstinence from gluten for life.