• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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:
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
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.

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
      107,377
    • Total Posts
      935,758
  • Member Statistics

    • Total Members
      65,063
    • Most Online
      3,093

    Newest Member
    caitilnr222
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Everyone!  Thank you for all your responses!  This site is so helpful and I appreciate everyone who replied to my post.   I was able to get an earlier appt with Maureen Leonard who was absolutely wonderful like you all said and after more testing and even a genetics test, my son now has a diagnosis of celiac disease.  He's been gluten free now for a few weeks.  He is doing very well on the diet so far.  He does seem to be sleeping better which was always a problem since he was an infant, so that is a good sign!  We test in 3 months and I hope that his iron levels go up. 
    • Are you substituting something for the PPI?    I'm not sure what meds will mix well with it, but you could ask the pharmacy or Dr. for advice on what might work.   I'm thinking you stopped something that may be helping in some ways, and are now allowing your symptoms to return.   If so, it makes sense to find something else to help with symptom control.   I don't know what products you have there.   We have Tums (calcium carbonate), Gaviscon (aluminum hydroxide with magnesium carbonate), Pepto and Kaopectate (same product), and Gas-X (simethicone).    I believe all of these can be taken with PPIs, but do check.    I don't know that Pepcid (Famotidine) can be mixed, but you could check that, too.   The Gas X really helps with the bloating and odd pains, as it breaks up the gas.  The Tums seems to help neutralize the acid and upset stomach / stomach pain.  These two are my mainstays.  You may have other products that could be as effective. Have you tried mixing bone broth with cornstarch or gluten-free flour to make a gravy?  Mix in some ground beef, chicken, or turkey, add some gentle veggies (carrots, or maybe a can of Chinese veggies?), a little bit of gentle spices for taste, and then put over gluten-free pasta or white rice.  Make a chicken sandwich with gluten-free bread.   Can you tolerate mayo?   Put a sprinkle of salt, pepper, and lemon juice on salmon, then coat with mayo and microwave.   Or mix some mayo with chicken or tuna for a chicken salad / tuna salad sandwich;  or eat just a scoop of it.   If you can tolerate dairy, Schar's newest version of table crackers are like saltines and are tasty.   If no dairy, try their breadsticks.  You could have either with soup or bone broth.   Schar's has enough fat to give you calories to help stave off weight loss, and you can add more by brushing a little butter on the crackers. You could try other casseroles with tuna or some lean ground hamburger.  Have you also looked at a possible new food intolerance?   I suffered for a few weeks before I figured out it was dairy for me.   Eliminating dairy wasn't enough.   I had to get rid of anything that might upset my stomach in order to start getting better.  I printed lists of low FODMAP, low acid foods, and low lectin foods, then selected only those foods that were on all 3 lists.   You might consider doing this with food lists that are right for you.  Hope this might spark some ideas!    
    •  I have a friend with MS, another with breast cancer and a third with RA.  At the same age my only problem is I cannot eat gluten!  So when I start getting frustrated about food I think about that and how lucky I truly am.  Once you get in the swing of it it gets easier and then you start to feel better which makes it all worth it.    Also when I first went gluten-free I read on this group about Mark's daily Apple and the Paleo community. I turned to that which was extremely motivating.  I've never seen so many people so excited about not eating gluten. It was a very positive energy and motivated me to find other foods to eat. Also, they love bacon! 
    • I know I needed the confirmation.  My hubby went gluten free per the very poor advice from my allergist and his GP.   It worked, but we really do not know if he has celiac disease.  He refuses to do a gluten challenge and I do not blame him.  We do know that gluten makes him sick.  He has been gluten free for 16 years.   So, when my GI suspected celiac disease, I could not believe it.  I had no tummy issues at the time, but was anemic.  Had been my whole life and it was blamed on a genetic anemia and menstruation.  I knew what being gluten free meant and I did not want to have celiac disease.  But,   I got positives  on the DGP and my biopsy.    Nothing like seeing something in writing.  I showed that to my extended family who was in denial as well.   I had a shared household with hubby all those years.  But after my diagnosis and the fact my kid started making things in the kitchen, we all went Gluten Free.  Great kid, but I could not trust her with my health!  If you DD has small siblings, consider all going gluten free.  They can eat gluten outside of the house.  That is what my kid does.  
  • Upcoming Events