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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 Gluten-Free recipes: Gluten-Free Recipes
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Lynsks

Trying to get answers and you guys seem the most knowledgable!!

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Hello,

I have been dealing with a mysterious rash for the past ten years that I am slowly beginning to think is DH.  It comes and goes, is itchy as all get out and shows up in all the areas that DH appears (elbows, back, torso, knees and base of neck).  It comes and goes over the years which has thrown me a little, but from what I can tell it can happen with DH? Anyways I went to an allergist, he was a jerk and told me it was not an allergy and to get a biopsy (which was done ten years ago when it first happened, but okay).  Me being at my wits end I called up a local dermatologist and got an appt for a biopsy.  I went in armed and ready with the info I have read here about the correct biopsy etc.  Well of course the dermatologist wouldn't give me the time of day :( Would not listen to the past history of the rash or look at photos, was in and out within five minutes and insisted on a scratch biopsy instead of a punch biopsy.  She simply said she would be highly surprised if it was DH.  I try to respect doctors so I pushed but I did not push hard enough.  She did the scratch biopsy against my recommendations.  So that brings us to today when I received a message that the biopsy showed an allergy and that they could either give me an order of prednisone or refer me to an allergist.  Now if you remember my local allergist sent me away and said it wasn't an allergy.  I am so done and I refuse to just keep medicating myself, I need to find the root cause.  

So I have a physical tomorrow night with my regular doctor and I am tempted to just insist on a punch biopsy next to the rash for a proper biopsy.  Couple questions for you guys though.  If a scratch biopsy came back as an allergy could that possibly lead to gluten allergy (I know it doesn't prove that, but could it mean it could be gluten?).  Should I keep pushing for a punch biopsy? I am planning to go gluten free after this appointment anyways but I keep eating it to try and get a proper diagnosis.  I feel I should get a proper diagnosis, one to keep me on track, one to make sure that is what it is and also I did try gluten free for 30 days before and it didn't seem to help the rash.  But from what I have read that could have been to short of a time.  I feel I need a proper diagnosis to help me stay with it and keep on the right path.  

Lastly, the rash definitely went through stages and is at an end stage, still itches like crazy but isn't as bad looking as when it started.  Does it matter when you take the biopsy as long as there is a rash it will potentially show? 

I hope all this makes sense.  I am tired of being told I am crazy from doctors.  If they could find the solution I wouldn't be looking myself.  I would be very happy to be proved wrong but so far that has not happened and I just want an answer! So tired of being itchy!!

Thank you very much for your help and listening!!!

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You may want to ask your doctor for a celiac panel. That would be a good start. The biopsy needs to be done next to an active lesion and they need to be looking for DH.  Unfortunately it can take a while for DH to be diagnosed because many doctors are not very knowledgeable in the skin form of celiac. Keep eating gluten until all celiac related testing is done. Then you can try the diet if the doctors haven't been able to figure things out or won't test properly.  It can take some time for DH to resolve so you might not notice a difference right away and folks with DH tend to be very sensitive to even small amounts of gluten so you must be very strict. Hope you get some relief soon as I know how miserable the rash can be.

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Yes I have seen the allergist, dermatologist and tonight my general doctor and they all pretty much say I am crazy.  The dermatologist did a scratch test and the results came back saying allergic contact dermatitis.  So she has ordered a blood test for allergens gluten.  Will this be the proper test?  I know there is a celiac panel blood test as well.  My general doctor claims that a result that says allergic contact dermatitis means whatever it is needs to be in contact with my skin so it cannot be gluten, same as my rash comes and goes and she said since I eat gluten all the time it can't be DH and lastly since I don't have any bowel issues it can't be gluten.  I tried to dispute all of these from what I have read on here.  Believe me I hope it is not a gluten allergy, but I have not had an answer in 10 years so signs lead to this I need to explore it.  Why do all of the doctors not have the information that is being spread here, what is right?  I believe all of you guys as you have been through it.  

Will the blood test for gluten allergy be sufficient?  Or should I have a full celiac panel or should I highly push for the punch test?

Unfortunately money is an issue so I am trying to make sure the proper test is administered instead of just going through all of them.

Thank you!

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There is no such thing as a gluten allergy test. There could be a wheat allergy test but nothing such as a gluten allergy test -- at least not from reputable medical testing. There IS a celiac blood panel but that in no way is a gluten allergy. Celiac disease is not an ALLERGY to gluten; it is an autoimmune disease, an autoimmune reaction to gluten NOT an allergic reaction. It IS possible to have both an allergy to wheat AND celiac disease concurrently. 

If I were you, I would insist on a dh biopsy done the CORRECT way. 60% of those with dh test negative on the celiac blood panel. If you get a positive dh biopsy then no further testing is needed -- the biopsy is definitive.

 

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Ugh I wonder what I just had done this morning then?  I am so confused and so upset with doctors.  I spent all afternoon calling around asking how much this test would cost before it was done.  Of course that is an impossible answer.  It is labeled as blood test allergens gluten so I have no idea what they tested for and that makes me so angry.  It costs 155 dollars :(  I am so frustrated with the whole process.  I am kind of to the point to just throw my arms in the air and say no more doctors.  It is costing an arm and a leg for the run around.  Thank you for your response and knowledge.

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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:

https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/

Learning about celiac disease (overview):

https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/

Testing for celiac disease via blood test:

https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/

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.  

Edited by cyclinglady

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