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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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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SeekingSarah

Dermatologist Wouldn't Due A Biopsy. :-@ (X Post...sorry Didn't Know There Was A Dh Board)

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NP said "well if the blood test were negative? then why test?" 

 

Hmmmmm how about you should biopsy a persistent skin rash in general before you go prescribing medication??? So then the doctor comes in and says she has two other patients with DH and my rash is not the areas that DH presents. Really...currently on face, neck, back, scalp...scars on arms and chest from past issues??? Not many other areas left???

 

Scolding me for scratching...that's why they aren't healing...use this medication for 14 days so the areas can heal. Ok...so I ask...this will heal the areas, but will it stop new spots from developing? "If new spots occur put medication on them and DON'T SCRATCH". Ok so if medication is so strong I can only use it for 14 days...what happens after that? 

 

It's like I'm asking for a full body scan or something radical and expensive???? Skin biopsy...in office procedure.

 

So do I try to find another doctor...I mean how do you know until you get there? I don't want to waste more time and $ going to doctors who will refuse to actually DX something...I say that again because why not biopsy to see WHAT it is...of course by her ignorance on the matter I figured she'd have not done the biopsy correctly anyway. 

 

OR do I just cut out gluten and see what happens? I haven't gone back to GI yet because I was going to see what the skin biopsy results were. He was certain it was "just IBS" but at least he ordered the Celiac panel which was negative. 

 

PCP in FL (I'm back in OH), is concerned with SED rate of 65, normal is under 20...she wants to know what my doctors here are saying is the reason...um yeah the doctors HERE suck and have not said anything about...she would like it checked again got see if it's still high. I told her I'd try...but doctors around here don't seem to like educated patients.

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    • Welcome!   Did you get skin biopsies?  Some celiacs are seronegative.  They might not even have intestinal damage.  Instead most of  the antibodies (and damage)  are in the skin.  I do not have DH, but suggest you scroll though the DK section and get tips.  Specifically on how to coach a derm properly on how to biopsy for DH (or find a celiac-savvy derm).   It is NOT the same for other rashes from what I have read.  I do not think a person with a gluten sensitivity can have DH because DH is celiac disease.  It just presents differently.   https://www.allergicliving.com/2017/07/11/celiac-thats-skin-deep-the-mysterious-rash-sparked-by-gluten/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ I hope you find relief!  
    • Adding the Frito Lay list that was updated a week or so ago
      http://origin-www.fritolay.com/snacks/special-dietary-needs/us-gluten-free-products-and-products-not-containing-gluten-ingredients.htm
    • Thanks - this was my question, also very confused by conflicting advice. Think I may reschedule blood test, at present in 10 days, as although not gluten free, have eaten very little; two casserole mixes in 4 weeks, Trying to lose weight. Will have an endoscopy for Barretts oesophagus in April so makes sense to get the timing right. Think its unlikely to be positive but in a way hope it is! Ill for about a year now and the only bad blood result is folic acid, very deficient in spite of a very healthy diet, duodenum was inflamed at last endoscopy 3 years ago. I see two doctors as both are part time. First blood test was in Feb , second in Nov by which folate level had improved but still low. Both doctors have now mentioned celiac disease. Take Levothyroxine 150 mcg and TSH normal. Symptoms are more like anemia but no megoblastic anemia or iron deficient showed up. ECG normal Doc is also doing a thyroid panel, hopefully with T3 but haven't been thyroid tired; definitely more like anemia Was fine on Levothyroxine for 4 years. Apologies for rambling!
    • You should hit report when you see this nonsense  
    • I used mine for the first three years I was diagnosed.  I used it for several reason, one it protects me legally from a company letting me go if I exceed my sick/personal time off.  Some companies even have a max of unpaid time you can take, but the FMLA allows me to use that as well and not be affected.     I didn't have a manager that was treating me bad or anything like that, but companies have rules that change all the time and I didn't want to become subject to that.   Also due to privacy acts, my manager received a letter with the FMLA dates and approval and I then never had to give any details about my condition or disease if I choose not to.     Just keep in mind that because you have FMLA does not mean they have to pay you for time off it just protects you to not be penalized for taking time off.       Now that I have my symptoms and condition under control I let my FMLA expire and have not had to use it in years. 
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