• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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? - 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 Gluten-Free recipes: Gluten-Free Recipes

Frustration With Diagnosis Vs Test Results (Pics) - Thoughts?
0

Rate this topic

10 posts in this topic

Recommended Posts

Hello all, I am super frustrated with my diagnosis journey over the last 15 years... a new city, a new diagnosis. Can you tell me if this looks right to you? For the last 15 years i was told I had severe eczema, that could not be controlled properly but by high potency corticosteriods, topical immunomodulators and sedative antihistamines. Now I am told it's not eczema, it's Dermatitis Herpetiformis. Blistering rash, rarely gone more than a few weeks if at all, symmetrical (elbows, knees, feet, hands, underarms, hips, stomach, buttocks), severe itch.

I am on Dapsone 25 mg 2x daily and now completely clear. Diagnosed Dermatitis Herpetiformis (Dermotologist). Blood tests done, then told to go GFD (Primary Care Doctor). Asymptomatic gastrologically, endoscopy done, told I don't have Celiac (Gastroenterologist). But if I have DH I have celiac disease right? Why can't all these doctors agree? Anyone's spots look similar?

Initial skin biopsy (punch): eczema negative, puritic vesicle observed

Immunoflorescence IgA skin biopsy (punch): Weak Postive

Blood Serum Celiac Comprehensive Panel (Quest Diagnositics - Ttg, EMA & EMA Titers): Positive

Small Intestine biopsy (EGD): negative

Thoughts?

(pictures from Oct 2012 - prior to biopsies, tests & Dapsone use)

zvbcs3.jpg

2h7jgps.jpg

2n8c3v7.jpg

2vbs9w6.jpg

2ith9uh.jpg

34ec9kk.jpg

34dhsvq.jpg

waprmo.jpg

33lla90.jpg

2agm6vr.jpg

Edited by tealiemonster

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Share some info from the " experts" - other doctors so they will take it seriously. for example:

http://www.cureceliacdisease.org/archives/faq/what-is-dermatitis-herpetiformis-dh

http://www.cureceliacdisease.org/archives/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed

"Can a skin biopsy for dermatitis herpetiformis (DH) confirm celiac disease or is an endoscopy still needed?

A skin biopsy should be done on a non-affected portion of the skin near the rash when there is an outbreak. It

Share this post


Link to post
Share on other sites

Yeah I'd seen that even in medical journals as a professional perspective. But it all happened so fast and since I was easy going and no cost was to be incurred I humored them. I always interpreted that as saying it wasn't a necessary procedure in diagnosis, not that it would come back negative :-/

Share this post


Link to post
Share on other sites

No my dear, often endo biopsies come back neg. on us. Our damage tends to be patchier & unless the GI is really, really knowledgeable & GOOD then they won't take enough biopsies for our damage to prove positive. I'm surprised your blood came back positive as we usually test neg. on the blood too. So your dx of dh PLUS the positive blood is a no brainer. That's more than needed! AND your rash has resolved on Dapsone. You have a home run.

In addition to the links/info. Karen has provided which are great; you can go through this. It's long but you can get more documentation to show them.

Share this post


Link to post
Share on other sites

Oh! And congratulations on finding out what the problem was after being misdiagnosed for 15 years! 15 years too late but now you know what you need to do.

Welcome to the board. And welcome to the club.

Share this post


Link to post
Share on other sites
Ads by Google:


Thank you so much :) it's bittersweet though I must admit. I stopped buy my local liquor store today and they smiled and were happy to order me some New Planet and Green's beer. I was afraid of ridicule and misunderstanding but this is off to an ok start.

Share this post


Link to post
Share on other sites

I do understand.

You will find good & bad --- ridicule, disbelievers & misunderstanding as well as those who are more... shall we say intelligent?... who will be supportive.

You have just gone gluten-free. There are things you are going to need to know. One is that many celiacs go through what we call gluten withdrawal. Just put those words in the search box & you will come up with innumerable threads on the subject. You need to know what to expect so you will recognize it if it happens to you so you won't think something else is going on.

And this link contains invaluable info. on the gluten-free diet, prepping your home/kitchen & suggestions of what to eat.

And whining & venting, ranting, raving, crying is allowed here. We get it. Been there, done that. And any questions you have you need only to ask. There are no stupid questions here.

Hey, the diet has a very steep learning curve but once you get the hang of it ----- piece of cake! You'll be fine. :) I promise.

Share this post


Link to post
Share on other sites


Ads by Google:


I wanted to add that we with dh have to be extra, extra vigilant not to get glutened. With Dapsone, it masks dh so you will not have dh flares to let you know you are getting cross contaminated (cc'd) & even if you weren't taking Dapsone; since dh can flare at any time then we really don't know if we've been glutened or it's just a naturally occurring flare. And each time we get cc'd we push our 2 years back you see? Without the gut issues we can't really tell when we've been glutened. And dh is sensitive to the smallest amount of gluten.

My hubs & I do not eat out, we eat food prepared only by our own hands, we eat 99.9% whole foods only. This way we KNOW we can not possibly be getting any gluten from any where.

Share this post


Link to post
Share on other sites

l've been nauseous all afternoon... could the gluten withdrawal come on that fast? I did as you recommended and searched it sounds like it, but I never imagined it would be this quick. Its funny, even though you recommended I get knowledgeable to ensure I don't think its something else, I still ended up taking a pregnancy test because I couldn't believe it'd be 24 hours into it. But I must admit my previous diet was borderline 100% gluten full...

Pregnancy test was negative BTW :)

Share this post


Link to post
Share on other sites

We are all individuals & therefore react on differing timelines & with differing severity but yes, it could come on that fast. Oh, a few nerves/anxiety could be mixed in there from contemplating this huge change in your life. Glad the pregnancy test was neg.! You don't need to add that to the mix just now ---- OH MY! :D

I'm very glad that you familiarized yourself with gluten withdrawal. It could be very scary if you had no idea what was going on. I had a lot of dizziness, feeling like my knees were going to buckle at any moment, brain fog, out there feeling, nausea, heart pounding, stark raving ravenous 24/7, weak, heavy feelings of low blood sugar, shaky & more. Mine lasted for a good, solid month/6 weeks & even then it sort of tapered off rather than one day disappearing. But again, we are all individuals....... I did find that I needed a LOT of protein in the morning - a LOT! Most of us do that at least in the beginning. I still require quite a bit but not as bad as the first 6 months.

((((HUGS)))) & hang in there.

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,160
    • Total Posts
      939,999
  • Member Statistics

    • Total Members
      66,143
    • Most Online
      3,093

    Newest Member
    honeyboss
    Joined
  • Popular Now

  • Topics

  • Posts

    • Pretty sure it's 12 weeks recommended by experts. Good luck to you!
    • Starch is gluten?  Ive been teaching all day and way too tired to make sense of this article.... http://healthyeating.sfgate.com/gluten-starch-same-thing-7317.html
    • I added some onion powder to my dinner today.After eating it i became curious and send an email to manufacturer.They told me its not gluten free they add starch to it.And on package it was saying we dont add anything else:( i dont have symptoms yet but they were selling a range of gluten free products so i remembered like it was gluten free and ugh im so tired of getting glutened by random and useless stuff like this i was doing great for more than a month then this happened im just exteremely sad right now Motivate me for tomorrow guys :((())  
    • Thank you both for the replies. The article is very insightful. Right now I am trying to reason with the thought of being miserable for 4-8 weeks to get a diagnosis. I feel so good right now it seems almost not worth it, but I also need to know if something is wrong and if there are potentially any other digestive system issues. I will likely go on a gluten challenge and deal with the side effects... after all, Thanksgiving is coming up 
    • Cheetah, We all have to make our own health decisions based on our individual circumstances.  There is not any “one size fits all” approach.  ☹️In your daughter’s case, she was asymptomatic.  I also would find it hard to believe that she had celiac disease despite confirmed biopsies and antibodies tests.  I get the denial.  I just had anemia that was disguised by a genetic anemia.  I was shocked at the suggestion of celiac disease.  My hubby had been gluten free for 12 and I knew exactly what the treatment meant — gluten free for life.  A total game changer.   Because we have bought our health insurance for over 20 years, we have lived through the times that I was uninsurable due to my Hashimoto’s, Rosacea and toe nail fungus (yes, that is right).    I never went without, but I could not freely jump from plan  to plan.  My premiums were higher than my hubby’s.  So, we worry that health insurance could change and I would be uninsurable again.  (Did I mention that our annual premium is $24,000?) However, the genetic test can be invaluable but is mostly used to help rule out celiac disease.  There are other genes associated, but they have not been studied well.   “So far, scientists have identified over a dozen possible non-H.L.A. genes that may be associated with celiac disease, but whether these genes actually play a role remains to be seen.”  (Sheila Crowe, now head of the American GI Association).   https://consults.blogs.nytimes.com/2010/01/13/genetic-testing-for-celiac-disease/ The antibodies test, in conjunction with the biopsies is the best means of diagnosing celiac disease to date.  The blood test is the least reliable as there are false positives (rare).    It is hard to dispute villi damage.  Too bad your Aunt did not get a biopsy, but understandably, an endoscopy can be costly if you lack insurance and there are many other reasons, so many are forced to forgo this procedure.   https://www.ueg.eu/education/latest-news/article/article/mistakes-in-coeliac-disease-diagnosis-and-how-to-avoid-them/   It is unfortunate that we must weight the risks and benefits of everything.    
  • Upcoming Events