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
What if my doctor won't listen to me?
An Open Letter to Skeptical Health Care Practitioners
Where can I buy gluten-free stuff?
Support this site by shopping at The Celiac.com Store.
I think you need to take a little time to learn about DH and celiac disease. Celiac and DH are technically autoimmune disorders. This is about DH:
Learning about celiac disease (overview):
Testing for celiac disease via blood test:
I think the full panel is around $400 and the basic budget screening which is pretty darn good (TTG IgA) is under $100.
If you are paying for your medical care (even under insurance) you have the RIGHT to copies of everything. So, when your doctor orders a lab test, ask for a copy of the order, so YOU know what he is ordering. Then you can google to see if he/she is ordering the right things. Get a copy of the results. Get a copy of the costs/receipt if you are paying out of pocket. Put your requests in writing.
I think some labs and doctors use the term for gluten allergy incorrectly. 1. There is a wheat allergy (IgE) that is like a peanut allergy which can cause anaphylactic reactions (throat swelling, breathing issues, drop in blood pressure). There are some blood tests that are about 50% accurate, along with skin scratch tests (also not super accurate. 2. There is celiac disease (autoimmune that when exposed to gluten attacks the intestinal track, skin or brain) triggered by gluten (I gave you the blood tests: TTG, DGP EMA). 3) Non-celiac Gluten sensitivity or Intolerance which is like celiac in terms of symptoms, but no antibodies are generated and intestinal damage does not occur. This diagnosis is reached when you have failed the first two as there are n tests for it.
Read through the DH section of this forum for symptoms and tips.
I hope this helps.
Finally, if you really suspect DH, you can always go gluten free. Keep in mind that you need to be strict and you need to adhere to the diet for at least six months to a year.
I mean I might get a prescription refill, or a new vitamin pill for example, and take it for awhile, with absolutely no symptoms. As we know, no symptoms does not mean no damage being done. I will feel fine for weeks, but then I start feeling awful, like a bad flu coming on. I never did get the intestinal symptoms others get.
This for me is the hardest part of having Celiac's, figuring out what did it. Last month I ended up with pneumonia because I thought the achey symptoms I was having was from gluten, maybe from cross contamination even though my kitchen is off limits to gluten, maybe from some new prescription, maybe from some new tea I was trying, maybe from new vitamins (marked gluten free but not certified, those have gotten me before), so I stopped taking all of that but didn't feel better and kept getting worse. It took me awhile to figure out I actually had a flu and by that time it went to my lungs and had to go to urgent care.
I think, at least from my personal experience, that these tests are accurate if you were diagnosed including blood work that was positive. All of the tests on my panel were positive by large numbers at diagnosis and over the next year, they went to very low normal for the ranges given. My GI symptoms were gone by then and the lingering neuro ones took longer to heal but they did. I would assume in a highly symptomatic Celiac, that resolution of symptoms, normalization of the blood work and weight gain would indicate healing. Whether I am 100% healed or not doesn't matter as my health is far better today than it was in my youth. I have not developed any more AI diseases than the 4 I already have and I call that a big win.
I think doctors do not take into account enough symptom resolution, weight gain for the skinny Celiac's or weight loss for those on the opposite end of the spectrum, as important markers for healing. I am not even sure if it is totally necessary for a person to heal 100% as there is overlap in the small intestine and nutrients are absorbed not in just one place, making it a brilliant design, when you think of it. If your health has improved dramatically on the gluten-free diet, along with the other things mentioned, then consider yourself healed well enough that you've regained your health back. Repeat endoscopy's are really for those still having problems.