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Test Results..confused

bittykitty

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bittykitty Rookie
bittykitty
Posted

I had my thyroid tested, and what I guess was a full panel of tests for celiac.IGE AB test came back negative reaction to gluten.Haven't seen any more results,yet doctor said there was a gluten reaction,and scheduled me for a biopsy.If I'm testing negative,why would this be?Doctor was hesitant to start with because I didn't have the "classic symptoms"(the runs,weight loss,ect)..I had the reverse,just with DH rash and exhaustion.He thought it was my thyroid,which test normally.

Very Very confused.

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WheatChef Apprentice
WheatChef
Posted

If you have DH then you don't need a single test, you have celiacs.

mushroom Proficient
mushroom
Posted

When you say DH, has this been confirmed by a skin biopsy? Or is this the biopsy the doctor is sending you for? As the previous poster said, if you have confirmed DH, you have celiac disease. The biopsy needs to be taken from clear skin immediately adjacent to the suspected DH lesion. This is a much cheaper and less invasive biopsy than the EGD.

bittykitty Rookie
bittykitty
Posted
  • Author

When you say DH, has this been confirmed by a skin biopsy? Or is this the biopsy the doctor is sending you for? As the previous poster said, if you have confirmed DH, you have celiac disease. The biopsy needs to be taken from clear skin immediately adjacent to the suspecsyted DH lesion. This is a much cheaper and less invasive biopsy than the EGD.

He is sending me for a small intestine biopsy.The DH rash was not confirmed by any testing..I had to puzzle that out on my own,when I first figured out something was wrong a year ago,and noticed that not only did it match the DH pictures I found exactly,it went away when I stopped eating gluten, and came back when I accidentally ingested some.Doctors down here were clueless and would not refer me for testing elsewhere..I had to pull strings to get an appointment at Duke,4 hours north.Didn't have a rash when I went..just extreme exhaustion,weight loss and stomach pains.Something must have come back positive,or he wouldn't have mentioned staying off gluten,or ordered a biopsy..just not sure if I'm missing some tests or what.

bestofthebunch Newbie
bestofthebunch
Posted

What is DH? (on many online forums, it stands for dear husband...haha...don't think that's the case here!)

Sorry! I'm a newbie.... :unsure:

bittykitty Rookie
bittykitty
Posted
  • Author

What is DH? (on many online forums, it stands for dear husband...haha...don't think that's the case here!)

Sorry! I'm a newbie.... :unsure:

A good description of Dermatitis Herpetiformis(DH):"like rolling in stinging nettles naked with a severe sunburn, then wrapping yourself in a wool blanket filled with ants and fleas...."

very itchy rash associated with celiac disease

Wolicki Enthusiast
Wolicki
Posted

DH is Dermatitis Hepaformis

dh is dear husband :D

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tarnalberry Community Regular
tarnalberry
Posted

An IgE test does not test for celiac. Do you have a copy of the results that you could share?

(IgE is the immune modulator in a classic allergy. Celiac is an autoimmune disease that is mediated by IgA and IgG antibodies.)

bittykitty Rookie
bittykitty
Posted
  • Author

An IgE test does not test for celiac. Do you have a copy of the results that you could share?

(IgE is the immune modulator in a classic allergy. Celiac is an autoimmune disease that is mediated by IgA and IgG antibodies.)

That's where I'm confused..did they even run the other tests?Been patient and tried not to bug the doctor too much(he teaches as well as practices,so he's a very busy man),but I'm going to e-mail him and find out today..

GENLAB Immunology: Final

IGE AB ALLERGEN GLUTEN

Reference

IGE AB ALLERGEN GLUTEN <0.35 kU/L

*************************************************

REFERENCE VALUES

Class IgE kU/L Interpretation

0 <0.35 Negative

1 0.35-0.70 Equivocal

2 0.71-3.50 Positive

3 3.51-17.50 Positive

4 17.60-50.00 Strongly Positive

5 50.10-100.00 Strongly Positive

6 >100.00 Strongly Positive

**************************************************

Detection of IgE antibodies in serum (Class 1 or greater)

indicates an increased likelihood of allergic disease as

opposed to other etiologies and defines the allergens

responsible for eliciting signs and symptoms.

nora-n Rookie
nora-n
Posted

In DH, there are tissue transglutaminase 3 antibodies responsible.

Youmight not get a tissue transglutaminase2 IgA test positive, maybe, maybe not.

(ttg2 is the most important celiac test done nowadays)

ttg is the most common abbreviation and there are IgA and IgG versions of the test. No IgE version.

then there are antigliadin IgA and IgG, and EMA antibody.

Now if you have not eaten lots of gluten every day, the biopsy in teh small intestine will most likely be negative.

Teh gut biopsy is often but nt always, more or less abnormal in DH. It might not be total villous atrophy, but abnormal in lesser degree, like increased IEL's.

they used to say one has to eat at least 0,3 grams of gluten per kg body weight per day, and that was 6 slices when i did the math for myself, and the bread here.

lately I have noticed they say at least 0,5 grams per kg.

If you eat little gluten, the biopsy of the gut will be falsely negative.

If you are on any kind of steroids, the results will be negative too.

maybe b-12 too, as it is very cell regenerative, but that is only speculation based on some observations.

bittykitty Rookie
bittykitty
Posted
  • Author

In DH, there are tissue transglutaminase 3 antibodies responsible.

Youmight not get a tissue transglutaminase2 IgA test positive, maybe, maybe not.

(ttg2 is the most important celiac test done nowadays)

ttg is the most common abbreviation and there are IgA and IgG versions of the test. No IgE version.

then there are antigliadin IgA and IgG, and EMA antibody.

Now if you have not eaten lots of gluten every day, the biopsy in teh small intestine will most likely be negative.

Teh gut biopsy is often but nt always, more or less abnormal in DH. It might not be total villous atrophy, but abnormal in lesser degree, like increased IEL's.

they used to say one has to eat at least 0,3 grams of gluten per kg body weight per day, and that was 6 slices when i did the math for myself, and the bread here.

lately I have noticed they say at least 0,5 grams per kg.

If you eat little gluten, the biopsy of the gut will be falsely negative.

If you are on any kind of steroids, the results will be negative too.

maybe b-12 too, as it is very cell regenerative, but that is only speculation based on some observations.

Have a feeling my house has been glutening me pretty good for the last year.Have had increasing abdominal pains,miscarried a baby,and cannot seem to stabilize my weight.BF finally agreed to make it a safe zone after the note from the doctor said he saw a positive reaction to gluten, and that I should stay away from it right now.Hopefully everything turns out normal,though.Still won't go back to eating like I did,no matter what.

nora-n Rookie
nora-n
Posted

yes, I do agree, those things would make many people go gluten free too.

Once you get used to it, it is quite easy.

The worst is eating out or with relatives.

Terrified Mom Newbie
Terrified Mom
Posted

Where is a good picture of DH online? My son's psoriasis started off looking like little white heads, like 30-40 of them on each thigh, then progressed into 7 or 8 total red plaque-like areas. Everything in between just disappeared. Psozerma lotion isn't doing a THING for it, almost seems to aggravate it, actually. :(

Terrified Mom Newbie
Terrified Mom
Posted

I did find this picture...

Open Original Shared Link

and that looks very much like his rash, though he has fewer spots and they are spread out a bit more. Then again, so do a lot of psoriasis pictures. :( It looks a lot like that until he gets in the bathtub, when it gets much redder.

mushroom Proficient
mushroom
Posted

I did find this picture...

Open Original Shared Link

and that looks very much like his rash, though he has fewer spots and they are spread out a bit more. Then again, so do a lot of psoriasis pictures. :( It looks a lot like that until he gets in the bathtub, when it gets much redder.

Psoriasis tends to form in larger individual areas with a scaly covering over it after a few days, rather than in individual bumps. It does not have white heads. It could very well be that your son has DH, in which case a biopsy performed adjacent to an active lesion could give you a positive diagnosis. A diagnosis of DH is a diagnosis of celiac. Could you get a referral to or schedule an appointment with (if referral not required) a dermatologist and get a biopsy done. It is very important that the biopsy not be done of the lesion itself but of the skin immediately adjacent to the lesion as that is where the antibodies will be foumd. Amazingly, some dermatologists do not know this. And the lesion must be active, even if it means you would have to give him a biscuit or something to trigger the reaction. Does he itch and scratch at it a lot. My husband had it and says it is both extremely painful and extremely itchy.

mushroom Proficient
mushroom
Posted

Just an additional thought. With my husband's DH it tended to end up in a blister type head which would burst. And it leaves scars.

Terrified Mom Newbie
Terrified Mom
Posted

Would it be ok for me to take a picture of my son's spots and post it here?

mushroom Proficient
mushroom
Posted

Would it be ok for me to take a picture of my son's spots and post it here?

There is a section of the forum devoted to Dermatitis Herpetiformis. Why don't you post it over there to keep everything together? You might even find some other pics there that look like his :) Go for it.

Terrified Mom Newbie
Terrified Mom
Posted

There is a section of the forum devoted to Dermatitis Herpetiformis. Why don't you post it over there to keep everything together? You might even find some other pics there that look like his :) Go for it.

Oooh, thanks!

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