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weebl

In the process of being diagnosed...

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Hi, I am new to the forum. I've very recently come to the conclusion that in all likelihood have Celiac disease. I just had the results of a blood test come back negative, after having been gluten free for about a month. My doctor was fairly certain it would come back positive, but that wasn't the case.

So I now have to reintroduce gluten for two weeks before performing the blood test again. I must say that I am rather apprehensive about that. I started off this morning gluten free, and got the call before lunch with the instructions.  I know it needs to be done, and I already had in the back of my mind that if I had to go back on gluten, I would definitely make it worth my while in terms of foods.

So how did I get to this point?

It started many, many years ago. One summer, I broke out in a rash during a hot spell, that looked and felt very much like the heat rash I used to get as a child in extremely hot weather. I was somewhat surprised to see it in adulthood, but didn't think much of it. The rash stayed with me through summer. Then summer went. And the rash didn't. It persisted through the winter, with my skin worsening.

By the next summer, I figured it was time to do something, and went to my doctor, who referred me to a dermatologist. All she wanted was to have me in and out, though did do a biopsy on my skin to see if it was some kind of warts. I knew it wasn't. And of course it came back negative. She had put me off by prescribing some ridiculously expensive and ineffective cream for a wart that I did have (and in the end, got rid of cheaply with Compound W). I was done with dermatologists for the next little while, and just worked my way through the supply of steroid cream to manage the itch.

A few years later, and the rash has now progressed to something worse. Another visit to my doctor, and another referral to a different dermatologist. He was a little better, but again it was a situation of "here's your cream, off you go." My doctor and I did briefly probe the possibility of allergens, and gave me some kind of blood test (not sure what), but it came back negative.

Life got busier, and I just worked off this latest supply of cream and refills. The patches moved (mostly) from my forearms to a new area, my calves and ankles, though the forearms remained, though much lessened in severity. Then the back of my neck also became a problem area. Other patches appeared and disappeared on a sporadic basis. The itch intensity reached new heights. Scratching until I was bleeding (and I didn't care, since the relief felt so good), scalding hot showers. I knew these weren't good in the long run, but had to have the immediate relief. This was just something I've come to accept that the medical profession lacked the interest or competence to properly diagnose me.

Fast forward to an allergist appointment a month ago for my son. He was in for a food challenge, and as part of trying to convince him to actually eat his allergen, he ended up showing the allergist my rash patches. She ended up doing a skin prick test on me, discovering at the very least, I was allergic to wheat if not gluten. I was told I needed to try cutting out wheat and gluten for a month, and see how that goes. My wife made sure I started at lunch that day, much to my protest, since I wasn't mentally prepared for the change.

The next day, I thought I imagined the itching seemed less intense, though it was too soon to know for sure. Then my fatigue felt better (still there due to insanely short nights of sleep with so much going on with the kids). Sure, I was still tired, but nothing like it was before. And my gut improved, never having a bloated feeling since, though those were only occasional. Less gas, and my stool changed, to what it should be on the charts. And I was less irritable. As time progressed, areas affected by the rash improved and some areas have cleared up a lot. The calves and ankles are still there, but the patches and scales seem lessened. The itches are still there.

I also encountered gluten a couple of times with negative results. I had a brewery tour, no consumption, but just being there seemed to cause a bit of regression of the rash on my forearms. A big bowl of chili on a night I was starving, and no one around who could tell me what was in it resulted in intense itching the next day, and a return of problematic stool for that day. I also became aware of a difference in the itchy feeling. The new stuff felt intensely burning, originating under the skin. The existing rashes not yet cleared up had a very dry, irritated feeling.

Though I had toyed with the idea it might have been Celiac years ago, I never did have it investigated further. I was back and forth over several types of rashes that it could be. It was always referred to as eczema by my medical practitioners. I did consider the possibility it was a form of psoriasis as well. And dermatitis herpetiformis did come up as a possibility. But so may conditions seemed to match what my skin looked like.

I now know that my skin condition is in all likelihood dermatitis herpetiformis, and all the symptoms that have been alleviated are pointing to Celiac disease, or at the very least, NCGS.

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6 hours ago, weebl said:

Hi, I am new to the forum. I've very recently come to the conclusion that in all likelihood have Celiac disease. I just had the results of a blood test come back negative, after having been gluten free for about a month. My doctor was fairly certain it would come back positive, but that wasn't the case.

So I now have to reintroduce gluten for two weeks before performing the blood test again. I must say that I am rather apprehensive about that. I started off this morning gluten free, and got the call before lunch with the instructions.  I know it needs to be done, and I already had in the back of my mind that if I had to go back on gluten, I would definitely make it worth my while in terms of foods.

So how did I get to this point?

It started many, many years ago. One summer, I broke out in a rash during a hot spell, that looked and felt very much like the heat rash I used to get as a child in extremely hot weather. I was somewhat surprised to see it in adulthood, but didn't think much of it. The rash stayed with me through summer. Then summer went. And the rash didn't. It persisted through the winter, with my skin worsening.

By the next summer, I figured it was time to do something, and went to my doctor, who referred me to a dermatologist. All she wanted was to have me in and out, though did do a biopsy on my skin to see if it was some kind of warts. I knew it wasn't. And of course it came back negative. She had put me off by prescribing some ridiculously expensive and ineffective cream for a wart that I did have (and in the end, got rid of cheaply with Compound W). I was done with dermatologists for the next little while, and just worked my way through the supply of steroid cream to manage the itch.

A few years later, and the rash has now progressed to something worse. Another visit to my doctor, and another referral to a different dermatologist. He was a little better, but again it was a situation of "here's your cream, off you go." My doctor and I did briefly probe the possibility of allergens, and gave me some kind of blood test (not sure what), but it came back negative.

Life got busier, and I just worked off this latest supply of cream and refills. The patches moved (mostly) from my forearms to a new area, my calves and ankles, though the forearms remained, though much lessened in severity. Then the back of my neck also became a problem area. Other patches appeared and disappeared on a sporadic basis. The itch intensity reached new heights. Scratching until I was bleeding (and I didn't care, since the relief felt so good), scalding hot showers. I knew these weren't good in the long run, but had to have the immediate relief. This was just something I've come to accept that the medical profession lacked the interest or competence to properly diagnose me.

Fast forward to an allergist appointment a month ago for my son. He was in for a food challenge, and as part of trying to convince him to actually eat his allergen, he ended up showing the allergist my rash patches. She ended up doing a skin prick test on me, discovering at the very least, I was allergic to wheat if not gluten. I was told I needed to try cutting out wheat and gluten for a month, and see how that goes. My wife made sure I started at lunch that day, much to my protest, since I wasn't mentally prepared for the change.

The next day, I thought I imagined the itching seemed less intense, though it was too soon to know for sure. Then my fatigue felt better (still there due to insanely short nights of sleep with so much going on with the kids). Sure, I was still tired, but nothing like it was before. And my gut improved, never having a bloated feeling since, though those were only occasional. Less gas, and my stool changed, to what it should be on the charts. And I was less irritable. As time progressed, areas affected by the rash improved and some areas have cleared up a lot. The calves and ankles are still there, but the patches and scales seem lessened. The itches are still there.

I also encountered gluten a couple of times with negative results. I had a brewery tour, no consumption, but just being there seemed to cause a bit of regression of the rash on my forearms. A big bowl of chili on a night I was starving, and no one around who could tell me what was in it resulted in intense itching the next day, and a return of problematic stool for that day. I also became aware of a difference in the itchy feeling. The new stuff felt intensely burning, originating under the skin. The existing rashes not yet cleared up had a very dry, irritated feeling.

Though I had toyed with the idea it might have been Celiac years ago, I never did have it investigated further. I was back and forth over several types of rashes that it could be. It was always referred to as eczema by my medical practitioners. I did consider the possibility it was a form of psoriasis as well. And dermatitis herpetiformis did come up as a possibility. But so may conditions seemed to match what my skin looked like.

I now know that my skin condition is in all likelihood dermatitis herpetiformis, and all the symptoms that have been alleviated are pointing to Celiac disease, or at the very least, NCGS.

Welcome to the forum!  

Consider a new doctor.  Celiac testing does require you to be on a full gluten diet.  If you go gluten free, you can be required to do a “gluten challenge” which is about 8 to 12 weeks!  It is just two to four weeks if you skip the blood tests and go for the intestinal biopsies.  

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

It does not sound like your doctor is celiac savvy.  😥

If you do the challenge properly, ask for a complete celiac panel.  Not all celiacs test positive on the TTG.  Ask for the EMA and DGP tests.  Some celiacs are even seronegative.  

It sounds like you may have DH on top of a wheat allergy.    A skin biopsy done again, by a celiac-savvy dermatologist can confirm a complete celiac diagnosis.  If you have DH, you have celiac disease.  You can have a wheat allergy at the same time. 

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

 

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Thanks, cyclinglady.

Our doctor is generally very good, and we have a good relationship with him. He is a GP, so not a specialist. I will call his office today, and ask about adding the other items to requisition. Not sure what's actually done at the labs here in Alberta, Canada. I am getting the impression that medically, resources here are lacking, unless you are dealing with a specialist, but to see them, you need a referral. And you can't get a referral without dealing with working through the lacking resources.

I am very apprehensive about starting gluten again. I don't want to feel like c&@%. And I don't want to do this only to get a negative result, and then I'm told it's nothing, and there's no interest for anyone else to pursue this further. 

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Your GP might be just fine.  Mine is great, but she is open to the research that I present to her.  She has over 2,000 patients and really can not know everything.  So, we work as a team.  If you are going forward with the challenge, make sure it is for the proper length of time.  We have seen too many members here who are in diagnostic limboland because they had been gluten free prior to testing and that is so frustrating!  

All first degree relatives should be screened even if they are asymptomatic should you get a celiac disease diagnosis. 

Edited by cyclinglady
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Probably a good idea. We've all had the TTG blood test done, all coming back negative. Not sure I am 100% convinced for all of my kids. I've told my brother he needs to get tested.

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Sigh. So I used a pizza lunch at work as the opportunity to restart gluten for testing purposes. I will still need to contact my doctor's office, but at least the clock can start ticking. And in a few hours, I'm sure I'll start to feel the symptoms.

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Bone deep. The itching is bone deep & more. You could scratch through the skin, down through the flesh to the bone, scratch straight through the bone & continue through the flesh on the other side until you had a hole you could see through

all

the

way

through

to the other side of whatever body part it was

AND STILL IT WOULD ITCH

Your best bet for dx is a dh biopsy but it MUST be done correctly! Here's how:

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

You need a dh savvy dermatologist. You need to take someone with you so they can WITNESS the biopsy being done correctly & that means not taken directly ON the lesion. 

A skin sample is taken from the area immediately next to a lesion and a fluorescent dye is used to look for the presence of Immunoglobulin A (IgA) deposits that appear in a granular pattern. Skin biopsies of people with DH are almost always positive for this granular IgA pattern.

It is important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits.

a dx of dh IS a dx of celiac disease & no further testing is needed. 

 

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

 

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

 

http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/

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

 

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13 hours ago, squirmingitch said:

Bone deep. The itching is bone deep & more. You could scratch through the skin, down through the flesh to the bone, scratch straight through the bone & continue through the flesh on the other side until you had a hole you could see through

all

the

way

through

to the other side of whatever body part it was

AND STILL IT WOULD ITCH

Your best bet for dx is a dh biopsy but it MUST be done correctly! Here's how:

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

You need a dh savvy dermatologist. You need to take someone with you so they can WITNESS the biopsy being done correctly & that means not taken directly ON the lesion. 

A skin sample is taken from the area immediately next to a lesion and a fluorescent dye is used to look for the presence of Immunoglobulin A (IgA) deposits that appear in a granular pattern. Skin biopsies of people with DH are almost always positive for this granular IgA pattern.

It is important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits.

a dx of dh IS a dx of celiac disease & no further testing is needed. 

 

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

 

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

 

http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/

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

 

This....is worth repeating.  Squirmingitch knows DH!

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I've read on this forum that a full Celiac panel should include these tests:

  • TTG IGA
  • TTG IGG
  • DGP IGA
  • DGP IGG
  • EMA
  • IGA

I am in Alberta, Canada, and every doctor has access to the same requisition form, with lab testing done only through the sole contractor for the province, or in hospital labs.

This is the form:

https://s3.amazonaws.com/cdn.freshdesk.com/data/helpdesk/attachments/production/3021561402/original/routine_req_edm.png?1471549284

Under the Immunology/Serology section, the one that my doctor ticked off the last time was the ATTG test. I assume this to be the TTG IGA from the list above.

Where would I find the others on this requisition form? Nothing else seems to match to the others. Or am I stuck with the one test here, because that is all they will do here?

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I'm not sure. You may be stuck with only what you got & the other tests can only be ordered by a GI specialist. I do see something there in the second column under General Chemistry, in the fifth box down, it says IgA, IgG, IgM. I don't know if those are the same as what we are talking about -- I know the IgM would not be but not sure about the 2 preceding that. I am not a doc.

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the IgA, prob would the the one you would want.  talk to the doc about the rest.  there is probably other req. sheets for more specialized uses.

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