TTG-IgA testing - any insight?

[sweeterin]

I've had a lot of testing done recently to determine the cause of several sudden onset issues, including chronic hives, insomnia/fatigue, fasciculations in my foot/abdomen/leg, and chronic diarrhea. My bloodwork has been normal aside from the following:

Elevated creatine kinase, elevated CH50 (total complement) and elevated IgA (TTG was 1).

My gastroenterologist suspects celiac, but the test result points to negative. How much stock should I put into the celiac panel?

What have been your experiences with the celiac blood test, or other indicators? Are these symptoms typical for celiac?

Thank you!

[Scott Adams]

If the celiac blood panel was negative then you likely don't have celiac disease. It is possible you have non-celiac gluten sensitivity, but this condition generally shows elevated antibodies in testing. 

Certainly trying a gluten-free diet won't hurt you, just make sure you are getting proper nutrients and fiber. It might be worth a try for a few weeks to see it it helps with your symptoms.

[cyclinglady]

You only had the TTG celiac test.  There are others like the DGP (IgA and IgG versions) and the EMA IgA.  You might be like me (biopsy confirmed).   I only test positive to the DGP.  I have never had a positive TTG and I have had done repeatedly.  Know too that about 10% of celiacs are seronegative.  Google it.  Then going to endoscopy is going to get you a diagnosis.  
 

Was that an elevated Immunoglobulin A (IgA) test?  You were above range?  Mine is very elevated still.   It can either mean cancer (e.g. multiple myeloma) or autoimmune (typically connective tissue (e.g. Rheumatoid arthritis or maybe celiac disease).  
 

Consider  asking for the full celiac blood test panel to start.  Do NOT go gluten free.  All, yes, all celiac disease testing requires you to be on a full gluten diet.  Please research the benefits of having a formal diagnosis.  
 

I suggest testing for antibodies (ANA) for RA and maybe thyroid antibodies (which indicate autoimmune and can wreak havoc like those hives) even if your thyroid is still functioning.  I have had bouts with Chronic Autoimmune hives which last about six months when flaring.   They seem to be triggered by my celiac disease, but my allergist thinks it is due to my Hashimoto’s Thyroiditis.  
 

 

 

Edited July 16, 2020 by cyclinglady

[sweeterin]

20 hours ago, cyclinglady said:

You only had the TTG celiac test.  There are others like the DGP (IgA and IgG versions) and the EMA IgA.  You might be like me (biopsy confirmed).   I only test positive to the DGP.  I have never had a positive TTG and I have had done repeatedly.  Know too that about 10% of celiacs are seronegative.  Google it.  Then going to endoscopy is going to get you a diagnosis.  
 

Was that an elevated Immunoglobulin A (IgA) test?  You were above range?  Mine is very elevated still.   It can either mean cancer (e.g. multiple myeloma) or autoimmune (typically connective tissue (e.g. Rheumatoid arthritis or maybe celiac disease).  
 

Consider  asking for the full celiac blood test panel to start.  Do NOT go gluten free.  All, yes, all celiac disease testing requires you to be on a full gluten diet.  Please research the benefits of having a formal diagnosis.  
 

I suggest testing for antibodies (ANA) for RA and maybe thyroid antibodies (which indicate autoimmune and can wreak havoc like those hives) even if your thyroid is still functioning.  I have had bouts with Chronic Autoimmune hives which last about six months when flaring.   They seem to be triggered by my celiac disease, but my allergist thinks it is due to my Hashimoto’s Thyroiditis.  
 

 

 

Thank you, this is very insightful! The gastro said I seemed "textbook celiac" and recommended a scope, this was before the test result came in. The IgA value was 319, which is a bit above normal range. I've already been tested for thyroid, rheumatoid and a bunch of autoimmune conditions, food allergies (all negative), CBC is all normal, but celiac is still a possibility I guess...

I was getting hives often, with no explanation, for about 9 months and when I tried gluten-free for a couple weeks they seemed improved. After that two weeks they have gone away and not returned. However, I have been eating gluten again for the past couple weeks, prior to testing, but the two weeks of not gluten-ing could have skewed my result? I just find it interesting that the hives are staying away despite gluten being reintroduced. Is that common as well, does it take some time to "build up" reactions if you stopped gluten-ing for a while?

Sorry for all the questions - it's hard to find these answers online, like how quickly/what types of reactions happen!

 

[cyclinglady]

It can take a while for the autoimmune reaction to build up antibodies in the bloodstream.  It is why a normal “gluten challenge” prior to blood test  requires consuming gluten about 6 to 12 weeks (Varies among celiac centers).  The longer the time, the better the result because you do not know if you generate a lot of antibodies quickly or not.   In as little as two weeks on a gluten-free diet, you can heal.  Rare, but possible.  That might have affected your blood tests.  A challenge to obtain biopsies via an endoscopy is about 2 weeks.  That is because the antibodies start in the gut for celiac disease.  
 

Your hives may appear the longer you are back on gluten if you actually have celiac disease.  Or maybe they will never show up again.  Autoimmune disease falls under the umbrella of hypersensitivity.  There are four types (celiac disease is type 4).    If you really overtax your system, you can develop other types.  For example, my regular IgE allergies to say, cats, is very elevated or made worse in the Spring when my body is fighting pollen (hay fever).  If I accidentally consume gluten, my “glass spills over” activating  not only my celiac disease,  but my other autoimmune or even mast cell issues.  Everything goes haywire.  

https://www.amboss.com/us/knowledge/Hypersensitivity_reactions

I never had hives before my diagnosis, at least not daily chronic ones.  Mine developed like clockwork.  They started every afternoon with a stomach ache, the. An itchy head and then eruptions from my neck down to the soles of my feet.  By morning they were gone until the afternoon.  It is hives, right?  Not dermatitis Herpetiformis which is a celiac blistery itchy bilateral rash?  
 

When you said your thyroid was fine, did your doctor check for thyroid antibodies?  Or did he just check to see if it was functioning (different from being under attack).  

The IgA value at my lab would be normal.  So, no worries there.  
 

 

Edited July 16, 2020 by cyclinglady

[Kate333]

On 7/16/2020 at 2:19 PM, sweeterin said:

 

Sorry for all the questions - it's hard to find these answers online, like how quickly/what types of reactions happen!

 

IMO you are much safer, wiser to ask/trust DOCTORS for a diagnosis, not rely on chatroom speculation, lay opinions based on personal/anecdotal experience, not objective scientific evidence or sound medical training.  You can really get needlessly stressed out, lose a lot of sleep, worrying about some of the wild things you read these days on the internet.  

[Scott Adams]

I can’t speak for other forums, but the info in this forum, which has outstanding long-term moderators, is very good, especially with regard to celiac disease testing. 

I actually hear far more horror stories coming from bad doctors, for example in this recent thread a poor lady had multiple strong positive celiac blood test results a year ago, yet her doctor never told her about this. Now she’s pregnant:

In any case, one thing I’ve learned over the 25 years that this site’s been online is you can’t always trust doctors, and many still don’t know enough about celiac disease, and even less about gluten sensitivity.

[sweeterin]

On 7/16/2020 at 7:11 PM, cyclinglady said:

I never had hives before my diagnosis, at least not daily chronic ones.  Mine developed like clockwork.  They started every afternoon with a stomach ache, the. An itchy head and then eruptions from my neck down to the soles of my feet.  By morning they were gone until the afternoon.  It is hives, right?  Not dermatitis Herpetiformis which is a celiac blistery itchy bilateral rash?  
 

When you said your thyroid was fine, did your doctor check for thyroid antibodies?  Or did he just check to see if it was functioning (different from being under attack).  

The IgA value at my lab would be normal.  So, no worries there.  
 

 

So I went and got my scope but haven't gotten in with the doctor yet. The biopsy does not indicate celiac. However, they also ordered the full celiac panel and it came back positive for gliadin (IgA). Both TTGs were negative and IgG was also negative. So it sounds like there are signs, but no actual confirmation? There are indicators of gastritis in one of the biopsies, but I don't drink much and very infrequently take NSAIDS, don't have symptoms of reflux like burping or heartburn. ANA, myeloma, mastocytosis, rheumatoid all negative. They've run TSH and T4, thyroid antibodies all normal. Can't wait to find out more next week when I can chat with the doc.

To answer previous questions, the "hives" show up what seems to be randomly (sometimes after a meal, sometimes not) and start out prickly, then become itchy with raised bumps and localized redness. Sometimes look like scratches but I haven't been scratching. They usually fade out after 15-30 minutes.

I'll update next week, but for now if you've had similar test results I'd love to hear from you!

 

[cyclinglady]

I test positive to only the Deamidated Gliadin Peptide (DGP) IgA test.  I have never had a positive on the TTG IgA, TTH IgG, DGP IgG or the EMA Test.  I have had these tests repeatedly run over the years and never had other other celiac tests show up as a positive.  Only the DG IgA which normally, I would request only to confirm a gluten exposure.  My biopsies revealed a Marsh Stage IIIB.  My endoscopy as viewed by my diagnosing GI was normal.  I think you should talk about how many biopsies were taken and from where,  more than four tissue samples should be taken per the American GI Association.  
 

Something triggered that DGP IgA test which is very specific and sensitive.  So, you might have caught celiac disease before it caused damage, or damage was missed (the size of the small intestine is larger than a tennis court).  You might research Autoimmune Gastritis.  It can be asymptomatic and can cause hives.  

[Gemini]

On 7/18/2020 at 6:44 PM, Kate333 said:

IMO you are much safer, wiser to ask/trust DOCTORS for a diagnosis, not rely on chatroom speculation, lay opinions based on personal/anecdotal experience, not objective scientific evidence or sound medical training.  You can really get needlessly stressed out, lose a lot of sleep, worrying about some of the wild things you read these days on the internet.  

Yeah, good luck with that! There are few doctors who really understand Celiac and how to diagnosis it correctly.  According to their criteria, they want you to advance to severe damage because then they can find it more easily.  Meanwhile, you go years and more and more damage occurs that can be difficult or impossible to reverse.

 I was a text book case of classic Celiac and they never diagnosed it.  I had to wait until I was deathly ill and 92 pounds before I figured it out and asked for the blood work.......which proved me correct.  The response I got when telling them I could eat like a high school football player and never could get my weight past 105 lbs. was “you just have a fabulous metabolism”!  Really......I have Hashi’s thyroid disease.  Explain that one, Doc!

This forum does not diagnose anyone.  We steer them in the right direction for testing and tell them when their doctor is making mistakes. And they make mistakes all the time.  We offer them support and guidance on how to do the diet correctly, to get the best results.  And we can offer them something doctors can’t........information on associated conditions that can occur with Celiac that they know nothing about or don’t recognize, like histamine intolerance.  If doctors were so good at what they do, there would be no need for this forum, other than support and guidance on the diet, once they are diagnosed. 

[sweeterin]

I'm back! So after getting elevated IgA on the celiac panel and DGP but no other markers on the serology, I had the endoscopy. They did not find signs of celiac in the biopsy. 

At the follow-up with my gastro, he said even though the biopsy came back negative, that I should assume I have some form of celiac or gluten sensitivity/intolerance. Basically saying I am pre-celiac or latent celiac? He also found Barrett's esophagus, and I have never had any problems with heartburn or reflux.

I'm puzzled. Have been eating gluten-free again and seems as if the hives are dwindling. Still twitching and have insomnia related to that, or just not being able to settle. Still having loose stools frequently. So wondering if there is something else going on, on top of this... And if I might just be crazy. Or that this is normal even when eating gluten-free.

 

[knitty kitty]

Hello, sweeterin,

Have you had a DNA test for the Celiac genes? If you've got one or two of the most common genes for Celiac, you may want to assume you have active Celiac Disease and that the damage just hasn't progressed to obvious severe damage. 

Celiac Disease causes malabsorption which can lead to multiple vitamin deficiencies.  

Thiamine (Vitamin B1) deficiency can cause muscle twitching and weakness, insomnia, fatigue, and chronic diarrhea.  Thiamine works with Magnesium.  Magnesium deficiency can also manifest as insomnia, fatigue and muscle spasms.  

There are eight B vitamins.  They are all water soluble and work together.  Most can't be stored for very long.  Thiamine stores can be depleted in as little as nine days to two weeks if you have chronic diarrhea or are under emotional or physical stress.   

Vitamin D deficiency is linked to hives and Barrett's esophagus.  

You may want to have your doctor check for vitamin and mineral deficiencies as part of follow up care.  

Hope this helps!

[cyclinglady]

It takes time.  Be patient.  You are not going to heal in just a few weeks or months.  Focus on the diet.  Master it.  Make sure you are not deficient in any vitamin and minerals (as Knitty Kitty advised and is recommended as part of celiac disease follow up care by celiac research centers) and make sure you are consuming nutrient-rich foods (real food).   You also might follow the advice of avoiding all oats for six months, keep a food journal to help indentify intolerances (you might have a lactose intolerance with the loose stools), do not eat out until you are well (exception 100% gluten-free restaurant).  
 

People with Barrett’s esophagus do not always have symptoms.  I have autoimmune gastritis (AIG) which is normally asymptomatic, but I had symptoms.  Go figure.  And like AIG, Barrett’s can lead to cancer.  One more reason to stick to a gluten-free diet.  While your doctor did not find damage in the usual places (small intestine size of tennis court), he did find gastritis (Visual)  and Barrett’s (biopsies?).  Not good.  
 

Make sure in six months you get that DGP IgA retested and then again at another six months.  It should be going down.  

[sweeterin]

On 8/13/2020 at 11:29 PM, knitty kitty said:

Have you had a DNA test for the Celiac genes? If you've got one or two of the most common genes for Celiac, you may want to assume you have active Celiac Disease and that the damage just hasn't progressed to obvious severe damage.

I have not! I read your reply and happened to speak with my PCP the same day. He said he had never heard of that. Do you have to ask someone specific for the test?

On 8/14/2020 at 10:41 AM, cyclinglady said:

It takes time.  Be patient.  You are not going to heal in just a few weeks or months.  Focus on the diet.  Master it.  Make sure you are not deficient in any vitamin and minerals (as Knitty Kitty advised and is recommended as part of celiac disease follow up care by celiac research centers) and make sure you are consuming nutrient-rich foods (real food).   You also might follow the advice of avoiding all oats for six months, keep a food journal to help indentify intolerances (you might have a lactose intolerance with the loose stools), do not eat out until you are well (exception 100% gluten-free restaurant).  
 

People with Barrett’s esophagus do not always have symptoms.  I have autoimmune gastritis (AIG) which is normally asymptomatic, but I had symptoms.  Go figure.  And like AIG, Barrett’s can lead to cancer.  One more reason to stick to a gluten-free diet.  While your doctor did not find damage in the usual places (small intestine size of tennis court), he did find gastritis (Visual)  and Barrett’s (biopsies?).  Not good.  
 

Make sure in six months you get that DGP IgA retested and then again at another six months.  It should be going down.  

Thank you for all this wisdom! I will look at the lactose, because I do enjoy cheese and yogurt!

So far I have had no deficiencies - they checked my magnesium, B-vitamins, iron, etc. I do eat pretty well; usually green smoothies in the morning with plant-based protein powder, lean proteins and brown rice or potatoes, a good amount of veggies. Sometimes I have to resort to fast food with my job, but even then I try to have balance (ordering a salad instead of fries, going to a place that has healthier choices). I have a glass of white wine once or twice a week, rarely drink sodas, have 1-2 cups of coffee in the morning and switch to water the rest of the day, rarely take NSAIDs, am not overweight...

That's why when the gastro told me I had signs of reflux, I was pretty shocked. Not to mention, the Barrett's biopsy was positive. So I have scheduled an appointment with a registered dietitian/functional medicine practitioner to explore what in my diet or lifestyle may be causing/has caused this condition, and what steps I can take to reduce future impact. Do you have experience with Barrett's?

[knitty kitty]

Thought this article might help....

And this one....