Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Test Results..confused


bittykitty

Recommended Posts

bittykitty Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



WheatChef Apprentice

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

mushroom Proficient

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

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

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

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

DH is Dermatitis Hepaformis

dh is dear husband :D


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

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

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

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

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

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

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

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

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

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

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

mushroom Proficient

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

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!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

    2. - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

    3. - trents replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    4. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    5. - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,085
    • Most Online (within 30 mins)
      7,748

    kk007
    Newest Member
    kk007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
    • knitty kitty
      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals.  Dietary changes (low carb/paleo) may be beneficial for you.  Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet?   It's harder to get all the vitamins needed from a gluten free diet.  Gluten containing products are required to be enriched or fortified with vitamins and minerals lost in processing.  Gluten free facsimile processed foods are not required to be enriched nor fortified.  So we have to buy our own vitamin supplements.   Glad to be of help.  Keep us posted on your progress!
    • Caligirl57
      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant.  I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.