This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can I be tested even though I am eating gluten free?
How long must gluten be taken for the serological tests to be meaningful?
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is there a list of gluten foods to avoid?
Unsafe Gluten-Free Food List (Unsafe Ingredients)
Is there a list of gluten free foods?
Safe Gluten-Free Food List (Safe Ingredients)
Gluten-Free Alcoholic Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
Where can I buy gluten-free stuff?
Support this site by shopping at The Celiac.com Store.
I really enjoy mushrooms, using upside down portabello in my bagel bite sub recipe, sauted in nutiva butter flavored coconut oil then served over salads, no carb gluten-free noodle dishes, and pureed into a broth for a stew/soup. Sometimes just snack on them even.
But it has always been hit and miss, like sometimes I get glutened sometimes not, they are by industry standard grown on wheat, barley, and rye. Even washing them seems to not minimize the randomness of it hitting me. I was almost concerned I was getting a tad paranoid. I recent found a few articles, one even explains why I have a hit and miss issues with local strawberries. Thought I would share my findings, see if anyone else has noticed a random issues with them.
Am I technically still early on in the diet at almost 5 months? Did you experience ups and downs like this at 5 months? And if I do eat foods that seem to bother me, as long as they don't contain gluten, is it hurting my progress? I think that's my fear. That if I have a dairy issue if I eat dairy (just an example) I will slow down my healing or that I will cause some immune response to the dairy. Or if I eat corn and corn bothers me is it damaging my intestine like gluten did? I spend so much time analyzing my gut. It's exhausting.
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There is a lot to learn about DH and celiac disease. It's not like a cold or something silly that you get over in a week. They are both lifelong chronic conditions. So it's a real good idea to start reading up on these conditions so you are prepared to live well with them.
DH can be controlled, but it takes attention. Members report avoiding iodine is helpful during the active phase of the skin rash. They also report that the skin rash is very sensitive to minor amounts of gluten and cross-contamination. Various treatments like DAPSONE are sometimes used but should not be an ongoing medication for life. The side affects are substantial.
It sounds like your doctors are not experts on DH. If you can find a celiac support group in your are, they may be able to recommend a better doctor. Not all doctors are good on celiac disease treatment and diagnosis.
That all makes sense about the carbs. I definitely eat carbs in the evenings, more so than during the day. I really don't think I'm being CC'd. But it's a worry. I just don't know how it would be happening. I think tonight I just won't snack and I'll see how I feel.
Members have told you that DH is a manifestation of celiac disease. If you had a skin biopsy by two clinics and they told you it was DH, then you have celiac disease which means that you have to follow a STRICT gluten free diet. Why the negative blood tests? Because a big chunk (can not recall the number) of DH suffers test negative. I do not personally have DH, but if you want relief from the itchy rash and to get off a very toxic drug, you need to go gluten free (which you have), but it must be very strict. Even the tiniest amounts of gluten that may not affect me, it going to hit you harder (from what I have read). Stick to Whole Foods (even avoid certified gluten-free processed foods) for several months until you see improvement. Do not eat out.
You can do it!
Consider following Jane Anderson. She has DH.
The last link will talk about why blood tests can be negative with those with DH.