Positive deamidated gliadin, iga and negative ttg, iga

[shellyb11482]

Hello,

I developed an extremely itchy skin rash that basically has covered me head to toe a few months ago. After being told it was eczema, reaction to bug bites, scabies, chronic urticaria, finally my dermatologist mentioned DH. She did a skin biopsy but took it directly from the lesion, not adjacent to, and it came back negative. Even so, she felt clinically it looked very much like DH and had me start Dapsone and a gluten free diet. She also decided to run a full celiac blood panel and my results came back but are very confusing. 

Immunoglobin A, Qn Serum - 206, Range 87-352

Deamidated Gliadin Abs, IgA - 113 High, Moderate to Strong Positive >30

Deamidated Gliadin Abs, IgG - 2, Negative 0-19

tTg, IgA - <2, Negative 0-3

tTg, IgG - <2, Negative 0-5

So my Deamidated Gliadin, IgA was very high yet my tTg, IgA was negative. My doctor said that both of these tests are considered highly accurate. She still thinks it stongly points to celiac but hasn't suggested I see a GI. At this point, I've been on a gluten-free diet for about 5 weeks and I know that I would need to start eating gluten again in order to get a small intestine biopsy. Has anyone else had results similar to these? Or can anyone explain why one would be positive and another negative? I should also mention that I've been taking Prednisone for 8 weeks and I wasn't sure if that could potentially affect the results. Thanks in advance for any help/advice you can provide!

 

 

[GFinDC]

Hi Shellyb,

Yes, Prednisone can affect your immune reaction tests.  It is used for immune system suppression after all.

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Open Original Shared Link

Prednisone is a synthetic Open Original Shared Link drug that is particularly effective as an Open Original Shared Link. It is used to treat certain Open Original Shared Link diseases (such as moderate Open Original Shared Link reactions), some Open Original Shared Link, and (at higher doses) some types of Open Original Shared Link, but it has significant Open Original Shared Link.

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It is not a problem for one antibodie reading to be high and another one low.  For example, some people are IgA deficient and just don't make that many IgA antibodies.  One test being low does not cancel out the positive reading on another antibodie.  You are making IgA though.

Yes, you should go back to eating gluten if you are planning to get the endoscopy.  You should also stop the Prednisone for testing.  That might not be fun but it will give you the more accurate results.

Since your doctor didn't do the skin biopsy correctly, maybe it would be better to try that again?  The skin biopsy is probably much less expensive than an endoscopy and you wouldn't have to eat gluten for a long time either.  The skin biopsy for DH is valid as confirmation in place of the endoscopic biopsy.

All this is relevant to how long you can put up with the itching though.  It may not be worth getting a formal diagnosis I suppose.  The end result is the same either way, you end up not eating gluten if the rash goes away with or without a diagnosis.  Some people want it because their children may inherit the genes for celiac, so they want to know if they have celiac.  But you can get a DAN test for celiac genes any time, even if you are not eating gluten.

DH'ers will tell you to avoid iodine in your diet also, as it can cause the rash to flare up.

Also, DH usually presents in a symetrical pattern, the rash appearing on both sides of the body in the same areas.

Welcome to the forum!

 

 

[shellyb11482]

Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me. 

My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of. 

My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!

[squirmingitch]

shellyb,

I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI.

Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power. 

I'll be back as soon as I can.

Question:

You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you?

Were you gluten free before the skin biopsy?

[shellyb11482]

SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly. 

My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive. 

That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive.

The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 

[shellyb11482]

Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.

[cyclinglady]

You have a positive on the panel and that normally should be enough for a GI referral.  Not everyone gets a positive TTG.  I tested positive only on the DGP IGA and yet my biopsies via endoscopy revealed a Marsh Stage IIIB.  I do not have DH.  Even on follow-up testing, my TTG is always negative (at least all the times I have had it done).  

I hope you figure it out.  Seems crazy that your doctors will not check your intestines to help make a diagnosis.  Too wrapped up with the rash?  

[shellyb11482]

Cyclinglady, that makes me feel better to hear that there are others who also had a positive DGP and negative TTG. Honestly, yes I think she was too wrapped up with the rash. I was seeing my dermatologist and allergist on a weekly basis because of how bad it was. Also, when I went to the derm, not only would I be seen by my primary doctor, but on several occasions she would have her 4 colleagues come in to see me and review my biopsies and blood work. So their main concern was figuring out the rash. I think this diagnosis was very unexpected for them so celiac and GI never came up.

[squirmingitch]

Heyyyy, I'm on for a bit unless we lose power. This is just a quickie with only some of the info. I wanted to give you. 

Negative bloods never negate a positive! You don't have to be positive on all the bloods or even more than one. But unless you're willing to eat gluten for 2 weeks for the endoscopy then there's no use doing one.

Those with dh tend to have fewer, milder GI issues (or none at all) and the damage in the small intestine tends to be patchier which logically means more biopsies should be taken in hopes of getting "the sweet spot". 

Like I said before, you don't need any further testing if you have a dx of dh.:

Open Original Shared Link

Open Original Shared Link

Also, in this link it confirms the biopsy needs to be taken on an area adjacent to a lesion NOT on a lesion:

Open Original Shared Link

 

And 60% of those with dh test negative on the serum panel (or 40% test positive) either way you want to term it. 

The following is from:

Open Original Shared Link

 Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease.

 

You stated you were taking steroids for a while. Steroids can turn false negatives:

Open Original Shared Link

You should make a print out of all these things, highlight the pertinent portions & give or send a copy to your derm & doc. Make enough copies to be passed out to all attending the grand rounds. They could all learn something which will make it much easier & better for the next person who walks into their office with dh. Educate them!

She's wrong about the following:

I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive. 

Another good link for how to do the dh biopsy correctly:

Open Original Shared Link

As well as this one:

Open Original Shared Link

Get your derm to order these blood test right away. The are specific to dh! Do it very soon. I think it will still show since you've only been gluten-free for 5 weeks now. Make copies of these too for the grand rounds.

IgA epidermal transglutaminase (eTG) also known as transglutaminase 3 (TG3) antibodies – highly specific for dermatitis herpetiformis (DH)Increased IgA epidermal transglutaminase antibody level – distinctly characteristic of and supports diagnosis of DH

TG3 – dominant antigen to which IgA antibodies develop in DH

Patients with DH – have antibody profile specific for TG3 with higher avidity than to TG2

Open Original Shared Link

This whole link is a worthy read:

Open Original Shared Link

 

It is no surprise you presented with this while pregnant. Pregnancy is known to be one of the triggers of celiac disease. Stress, illness, surgery can all trigger latent celiac to present.

 

[shellyb11482]

Wow, thank you so much for all of that information! This is so helpful. I will definitely print this info out and bring it in to my next appointment. I really appreciate all of your help!

[squirmingitch]

You're welcome! 

Shelly we weathered Hermine just fine. Lost power for 3 hours during the night. No damage here. It tracked slightly north of the center of the forecast cone which made it a tad better for us but really, we didn't get nearly what "they" touted. You're up next for Hermine. Just stay safe indoors.

We are worn out though from preparations & mental stress not to mention lack of sleep. There's a link I couldn't find last night that disputes the derm saying," if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present" and, " IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive."

I will hunt for it after i've rested up & put our home back to rights.

The antibodies stay in the skin a LONG time. Why does she think they say 2 years on Dapsone??? Duh. It's b/c the antibodies stay under the skin. One won't test positive for 2 years but the antibodies are still there in most cases and just waiting like little bombs for something to set them off EVEN when you're not eating gluten. The antibodies are easily destroyed by scratching and in fact, the lesions themselves destroy the patterning the pathologist is looking for and THAT is the reason a dh biopsy is NOT taken ON the lesion but rather on clear skin adjacent to a fresh lesion. 

It might take me days to get back to this but I will eventually. Meanwhile you could benefit much by just starting & reading thread after thread after thread in this dh section.

[cyclinglady]

27 minutes ago, squirmingitch said:

You're welcome! 

Shelly we weathered Hermine just fine. Lost power for 3 hours during the night. No damage here. It tracked slightly north of the center of the forecast cone which made it a tad better for us but really, we didn't get nearly what "they" touted. You're up next for Hermine. Just stay safe indoors.

We are worn out though from preparations & mental stress not to mention lack of sleep. There's a link I couldn't find last night that disputes the derm saying," if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present" and, " IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive."

I will hunt for it after i've rested up & put our home back to rights.

The antibodies stay in the skin a LONG time. Why does she think they say 2 years on Dapsone??? Duh. It's b/c the antibodies stay under the skin. One won't test positive for 2 years but the antibodies are still there in most cases and just waiting like little bombs for something to set them off EVEN when you're not eating gluten. The antibodies are easily destroyed by scratching and in fact, the lesions themselves destroy the patterning the pathologist is looking for and THAT is the reason a dh biopsy is NOT taken ON the lesion but rather on clear skin adjacent to a fresh lesion. 

It might take me days to get back to this but I will eventually. Meanwhile you could benefit much by just starting & reading thread after thread after thread in this dh section.

Glad you are okay!?

[shellyb11482]

Glad to hear you are ok! We lost power a couple of times today but not for too long. I think the worst of the storm is over. I have been reading through the DH threads on here and will continue to do so. Thank you again for all of your advice!

[squirmingitch]

Thank you both for your concern. I'm glad you're through the worst of it too Shelly. I guess by now you're all done with it. Yay!

I haven't had time yet to look for the link. Just popping in before I fall down for a much needed nap. Got groceries this morning & that was enough. Yesterday we put everything back to rights despite our vow to just let it all slide until we were rested up. Well, at least it's done. Now the yard needs cleaning up from all the plant litter. I swear it can sit there for a week -- I don't care!

[squirmingitch]

The following excerpted from: Open Original Shared Link Emphasis mine.

DIF has a sensitivity and a specificity close to 100% for the diagnosis of DH. Moreover, according to the ESPGHAN guidelines for celiac disease, a positive DIF in a patient with suspected DH allows for the diagnosis of celiac disease without the need of duodenal biopsy.8 DIF should be performed on uninvolved perilesional skin, since in skin lesions IgA can be removed by inflammatory cells. Moreover, patients must be on normal diet, because IgA deposits can disappear from the skin in period of times variable from weeks to months in patients on a gluten-free diet. If the patient is on a gluten-free diet, a normal gluten-containing diet should be administered and the biopsy taken after at least 1 month.

In the case of negative results for DIF in patients with a high clinical suspicion of DH, the site of the biopsy should be reconsidered and another specimen should be taken from uninvolved perilesional skin. Very rarely, cases of patients with DH showing negative DIF results are reported in the literature.29–31 In such cases, the combination of clinical, histopathological, and serological data, together with all the examination needed for celiac disease, can help make the diagnosis.

 

 

[squirmingitch]

There is also this from: Open Original Shared Link

Under this section: Diagnosing DH With Skin Biopsy and Blood Tests

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.
Read more at Open Original Shared Link

And there is this:

The biopsy is taken from the skin next to a lesion and not directly from a blister since the inflammatory response can destroy the antibodies and result in a false negative.

From:

Open Original Shared Link

[shellyb11482]

I can't thank you enough, Squirmingitch. You are such an amazing resource! 

[squirmingitch]

You're more than welcome! Make sure to take copies of those print outs to be passed out at grand rounds.

 

[MmmBread]

" And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. "

Can I just ask something?

I was told unequivocally that positive Gliadin is 95% specific for Celiac.  Regardless of what the other tests come back as.  Its simply a different antibody.  Not everyone is going to test positive to every single antibody, and these are only 3 of a possible many, many more that could be associated with Gluten intolerance.  So it seems completely unscientific for any doctor to see a strongly positive Gliadin test and claim they "arent sure" if the person has celiac.  Is this information wrong?  Isn't Gliadin supposed to be the next generation test that is supposed to finally identify the outliers and a lot of the people who DO have celiac but don't test positive on the regular tests?

As for the DH - I know for a fact that I have it.  Unfortunately San Diego is a horrible place to live if you need medical care.  The wait to see any dermatologist is nearly 3 months.  The wait to see a Gastro is 2 months.  Its truly absurd and frustrating.  When I lived in Miami, I could have an appointment with a specialist in a matter of 2 days, any time of the year, for any issue that arose.  So I don't really know what I'm supposed to do when I live in a city that is so ill-equipped to provide basic health care.

[cyclinglady]

3 hours ago, MmmBread said:

" And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. "

Can I just ask something?

I was told unequivocally that positive Gliadin is 95% specific for Celiac.  Regardless of what the other tests come back as.  Its simply a different antibody.  Not everyone is going to test positive to every single antibody, and these are only 3 of a possible many, many more that could be associated with Gluten intolerance.  So it seems completely unscientific for any doctor to see a strongly positive Gliadin test and claim they "arent sure" if the person has celiac.  Is this information wrong?  Isn't Gliadin supposed to be the next generation test that is supposed to finally identify the outliers and a lot of the people who DO have celiac but don't test positive on the regular tests?

As for the DH - I know for a fact that I have it.  Unfortunately San Diego is a horrible place to live if you need medical care.  The wait to see any dermatologist is nearly 3 months.  The wait to see a Gastro is 2 months.  Its truly absurd and frustrating.  When I lived in Miami, I could have an appointment with a specialist in a matter of 2 days, any time of the year, for any issue that arose.  So I don't really know what I'm supposed to do when I live in a city that is so ill-equipped to provide basic health care.

There is a celiac center affiliated with UC San Diego:

Open Original Shared Link

 

 

[shellyb11482]

Ok, so I would love to hear your opinions and advice on this. I attended grand rounds last week and the day after my dermatologist called me to tell me what all of the doctors discussed. Many of the other dermatologists didn't think I had DH because they didn't think my scars were in a pattern that looks like classic DH. Their guess is that I just have general urticaria. This is confusing to me because I've never had an allergic reaction before in my life. I never have even gotten seasonal allergies. I was a very healthy individual before this all started.

My doctor still strongly believes I do have DH. Mainly because my DGP IgA was very high (she said oddly the doctors didn’t address this at grand rounds), because of how intense my itching was and because none of my other treatments before Dapsone & gluten-free diet worked. Particularly the Prednisone. I was on 2 Prednisone tapers that started at very high doses, and even on those, I had an active rash. She said that Prednisone always eliminates rashes, so the fact that it didn’t help mine, is a big red flag.

The weird thing is that I decided to experiment once I heard all of this and I started to eat gluten again and stopped taking Dapsone. It’s been almost 4 days since doing this and I haven’t broken out in a new rash yet. Almost immediately after I first consumed gluten I had the big D, but I’ve only had it once since. I have started to get itchy, but it’s not the 24/7 itchy I was before and it’s not nearly as intense of an itch. This really confuses me because I would have thought I’d immediately break out again once I started eating gluten. The only other odd symptom I noticed is that I’ve been extremely dizzy the past couple of days and have had some headaches (although I do get a lot of headaches in general)

So does this mean I don’t have DH since I haven’t broken out in a rash yet? I’m just so confused because then what does that blood test mean? Or is it possible to consume gluten without a major breakout? From reading others’ experiences on here, it sounds like the longer people go gluten-free, the worse their flare ups are. Could mine not be that bad because I’ve only been gluten free for a few weeks? I just don’t know what to think.

My doctor wants to do another skin biopsy on me since the first was done incorrectly, but the problem is that I’ve been gluten free for a while (up until the last few days) and I don’t have an active rash. I would think no matter what it would come back negative just due to the circumstances. I’d love to hear your thoughts on both my (non)reaction and the new biopsy.

[squirmingitch]

The blood was positive. Period.

The rash can present OR NOT whether you're eating gluten OR NOT whenever it darn well feels like it so you eating gluten & not immediately breaking out does NOT mean it isn't the rash.

IMO 99.9% chance any dh biopsy is going to be a false negative. Ask for that blood test I told you about -- there may be a chance that will come positive.

[Fundog]

On 9/11/2016 at 3:48 PM, squirmingitch said:

The blood was positive. Period.

The rash can present OR NOT whether you're eating gluten OR NOT whenever it darn well feels like it so you eating gluten & not immediately breaking out does NOT mean it isn't the rash.

IMO 99.9% chance any dh biopsy is going to be a false negative. Ask for that blood test I told you about -- there may be a chance that will come positive.

Okay, just for clarification:  is that just until all the antibodies are purged from the system, or is that forever?  I'm having a bit of a flare up right now myself, though not nearly as bad as before going gluten free.  I've only been gluten free about ten weeks, so I know I've got a long time yet before I really clear up.  But please tell me there is a light at the end of the tunnel.  I'm so tired of itching and scratching!

[squirmingitch]

4 hours ago, Fundog said:

Okay, just for clarification:  is that just until all the antibodies are purged from the system, or is that forever?  I'm having a bit of a flare up right now myself, though not nearly as bad as before going gluten free.  I've only been gluten free about ten weeks, so I know I've got a long time yet before I really clear up.  But please tell me there is a light at the end of the tunnel.  I'm so tired of itching and scratching!

That is just until the antibodies are purged from the system --- the antibodies that are lurking UNDER the skin. From the research I have read, that can be anywhere from months to 2years to 10 years. Some texts say it can flare for life but I noticed those were generally old, (outdated) texts. I have to believe that was due to people not really knowing how to prevent cross contamination and people being careless or just not knowing how to truly eat gluten free.

Remember, dh is sensitive to the tiniest amount of gluten. I will not risk eating out at all. When I go 5 years with zero dh then I might eat out IF I happen to be where there is a 5 star restaurant that is GIG trained etc., etc., etc.. or a strictly gluten-free restaurant. At present there isn't such a beast anywhere near the town I live in.

[Lobstah]

I travel a lot for business, so this is a constant challenge for me, and I have conversations with chefs and staff all the time.

My safest bet, generally speaking, is a steakhouse.  I can pretty much always get a wedge salad (check for gluten free blue cheese dressing, but at a steak house, usually made in-house), and a ribeye steak.

Sometimes it's a cheeseburger with no bun and a side salad, but I rarely do that, as there's some risk that they use a salad "mix" that already had croutons in it, and they just took them out.