Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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

10 posts in this topic

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
0

Share this post


Link to post
Share on other sites


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

0

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 :-/

0

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.

0

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.

0

Share this post


Link to post
Share on other sites




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.

0

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.

0

Share this post


Link to post
Share on other sites

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.

0

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 :)

0

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.

0

Share this post


Link to post
Share on other sites

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
      103,608
    • Total Posts
      918,335
  • Topics

  • Posts

    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,707
    • Most Online
      1,763

    Newest Member
    Ree8080
    Joined