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

dermatitis herpediformis serum positive egd negative endoscopy negative intestinal biopsy negative punch biopsy

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#1 tealiemonster

 
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Posted 28 December 2012 - 02:14 PM

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)

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Edited by tealiemonster, 28 December 2012 - 04:11 PM.

  • 0
Skin Scraping for microscopic analysis - negative for scabies 9/24/2012
Punch Skin Biopsy in 10% formalin for microscopic analysis - negative for eczema marker, vesiculobullous observed 10/9/2012
Prednisone 10mg 2x daily - no improvement 11/09/2012
Punch Skin Biopsy in michael's solution for Immunoflorescence IgA testing - Weak Positive 10/15/2012
Blood Serum test, Quest Diagnostics Comprehensive Celiac Panel (Ttg, EMA & EMA Titers) - Positve 11/26/2012
Blood Serum test, RAST Wide Geographic Screening (not Wheat) - Negative 11/26/2012
Dapsone 25mg 2x daily since 11/26/2012 (itching gone in 24 hrs, rash gone in 48 hrs, lesions healed in 1 mos)
Small intestine biopsy (EGD) 3 samples taken - Negative 12/18/2012
Diagnosed Dermatitis Herpetiformis by Dermatologist 11/15/2012, Diagnosed Celiac by Primary Care Physician 11/30/2012
Gluten Free 12/28/2012

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#2 kareng

 
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Posted 28 December 2012 - 02:26 PM

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

http://www.curecelia...erpetiformis-dh


http://www.curecelia...py-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. Itís not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive."
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#3 tealiemonster

 
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Posted 28 December 2012 - 03:14 PM

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
Skin Scraping for microscopic analysis - negative for scabies 9/24/2012
Punch Skin Biopsy in 10% formalin for microscopic analysis - negative for eczema marker, vesiculobullous observed 10/9/2012
Prednisone 10mg 2x daily - no improvement 11/09/2012
Punch Skin Biopsy in michael's solution for Immunoflorescence IgA testing - Weak Positive 10/15/2012
Blood Serum test, Quest Diagnostics Comprehensive Celiac Panel (Ttg, EMA & EMA Titers) - Positve 11/26/2012
Blood Serum test, RAST Wide Geographic Screening (not Wheat) - Negative 11/26/2012
Dapsone 25mg 2x daily since 11/26/2012 (itching gone in 24 hrs, rash gone in 48 hrs, lesions healed in 1 mos)
Small intestine biopsy (EGD) 3 samples taken - Negative 12/18/2012
Diagnosed Dermatitis Herpetiformis by Dermatologist 11/15/2012, Diagnosed Celiac by Primary Care Physician 11/30/2012
Gluten Free 12/28/2012

#4 squirmingitch

 
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Posted 28 December 2012 - 05:37 PM

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.
http://www.celiac.co...-reading-on-dh/
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#5 squirmingitch

 
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Posted 28 December 2012 - 05:40 PM

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

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#6 tealiemonster

 
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Posted 28 December 2012 - 06:40 PM

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
Skin Scraping for microscopic analysis - negative for scabies 9/24/2012
Punch Skin Biopsy in 10% formalin for microscopic analysis - negative for eczema marker, vesiculobullous observed 10/9/2012
Prednisone 10mg 2x daily - no improvement 11/09/2012
Punch Skin Biopsy in michael's solution for Immunoflorescence IgA testing - Weak Positive 10/15/2012
Blood Serum test, Quest Diagnostics Comprehensive Celiac Panel (Ttg, EMA & EMA Titers) - Positve 11/26/2012
Blood Serum test, RAST Wide Geographic Screening (not Wheat) - Negative 11/26/2012
Dapsone 25mg 2x daily since 11/26/2012 (itching gone in 24 hrs, rash gone in 48 hrs, lesions healed in 1 mos)
Small intestine biopsy (EGD) 3 samples taken - Negative 12/18/2012
Diagnosed Dermatitis Herpetiformis by Dermatologist 11/15/2012, Diagnosed Celiac by Primary Care Physician 11/30/2012
Gluten Free 12/28/2012

#7 squirmingitch

 
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Posted 28 December 2012 - 07:54 PM

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.
http://www.celiac.co...ewbie-info-101/

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

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#8 squirmingitch

 
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Posted 29 December 2012 - 01:58 AM

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

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#9 tealiemonster

 
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Posted 29 December 2012 - 06:32 PM

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
Skin Scraping for microscopic analysis - negative for scabies 9/24/2012
Punch Skin Biopsy in 10% formalin for microscopic analysis - negative for eczema marker, vesiculobullous observed 10/9/2012
Prednisone 10mg 2x daily - no improvement 11/09/2012
Punch Skin Biopsy in michael's solution for Immunoflorescence IgA testing - Weak Positive 10/15/2012
Blood Serum test, Quest Diagnostics Comprehensive Celiac Panel (Ttg, EMA & EMA Titers) - Positve 11/26/2012
Blood Serum test, RAST Wide Geographic Screening (not Wheat) - Negative 11/26/2012
Dapsone 25mg 2x daily since 11/26/2012 (itching gone in 24 hrs, rash gone in 48 hrs, lesions healed in 1 mos)
Small intestine biopsy (EGD) 3 samples taken - Negative 12/18/2012
Diagnosed Dermatitis Herpetiformis by Dermatologist 11/15/2012, Diagnosed Celiac by Primary Care Physician 11/30/2012
Gluten Free 12/28/2012

#10 squirmingitch

 
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Posted 29 December 2012 - 08:12 PM

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

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 





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