Virus, celiac disease or both?

[Shining My Light]

Hello, 

In May of 2025 I started seeing a functional medicine doctor.  She ran a lot of labs, about 25 different things. 3 things came back abnormal. My vitamin D was low, 26.6 normal is 30-80 but I live in a northern state of the US and a lot of people are low, my total omegas were also low. 

Transglutaminase IgG Antibodies

(Normal range: below <6 U/mL my value was 28)

Transglutaminase IgA Antibodies

(Normal range: below <4 U/mL my value was 30.)

I had no idea what this test even was prior to it coming back abnormal. I do not have any of the typical celiac symptoms. My doctor isn’t available to go over my results until July as she is out of the office.

Since my levels are normal in all other areas, including ANA, Iron, C-reactive protein, etc. It seems to me that this is likely falling into that 10% window of false positive. 

Here’s why I think this is the most possible answer, I got sick with some sort of viral illness. Cold/flu like symptoms about 3-4 weeks prior to having the test done. I’ve read that can temporarily raise your TTG numbers. The other autoimmune diseases that could also raise numbers don’t fit my symptoms either. I think if nothing else it was important for me to share this info with the celiac world so they had some more data from another humans perspective.

I’ve done an embarrassing amount of reading on this. Even on this forum.(trents and Scott Adams feel like friends at this point 😂 )

I’ve had 2 EGD done the first in 2022 which showed having candidas in my esophagus. Seen infectious disease, which did a very thorough work up, couldn’t find any reason why that happened. I had another one in 2023 and it was normal. I really do not want to do another one. But, I think to go life long without gluten maybe the only answer. I’ve had on and off GI symptoms my whole life. I think I would be more suspicious of IBD. Which I’ve heard can also increase TTG levels. 

I’m mid 40’s female who doesn’t like bread and pasta as much but lives for cake. I’m pretty sure the amount of gluten I’ve eaten in the last 6 weeks qualifies because of that. Definitely haven’t eaten 4-6 slices of bread daily however. My gluten also would come from tortillas but mostly cake 😆 

I think I need someone to validate my suspicions so I can’t not feel so guilty about eating gluten. 🫣 I’m toggling with this being a virus for the elevated levels or a virus sparking it.

Thankful for any insight. 

[trents]

Welcome to the forum, @Shining My Light! It's good to be able to engage a secret "friend".

I know you don't want to hear this, but with a positive tTG-IGA, a positive tTG-IGG and off and on GI distress, your next logical step would be to get an endoscopy done with a biopsy of the small bowel lining (duodenum and duodenum bulb) to check for villous atrophy, the hallmark of celiac disease. Sounds like you have had upper GIs done in the past but you do not specifically mention having been biopsied for villous atrophy. Without this step, you will not be able to pin things down and it will likely be difficult to stay on the gluten free bandwagon because of the human tendency to rationalize.

Edited June 13 by trents

[Shining My Light]

Hi @trents! 
 

I feel like relying to a super star with as much of your content I’ve read. Lol. 
 

I definitely don’t disagree with you but I think I’m so chicken about another EDG.  What do you think about the EMA-IgA test? 

I’ve read so much at this point I don’t know if I trust anything completely. Even if everything said yes I would still wonder if it was really something else. It really does seem like the possibilities are endless with all of these tests, etc. and then I think I would be extremely frustrated if the EGD came back normal and then I would still struggle whether I should really be eating gluten or not. 
 

i’m also wondering how many people I’ve had the same levels I’ve had and it not be celiac I’ve not ran across anyone like that everyone I know that has a gluten intolerance or celiac cannot tolerate gluten at all have tested negative for celiac. 

I would love to have someone who was a-symptomatic and was confirmed celiac that had an improvement. 

I’ve had several people tell me if I have no symptoms then I shouldn’t care. I would like to live in that ignorance but every time I want cake it makes me wonder and it’s not a good feeling. 

[trents]

There are plenty of people with celiac disease walking around who are largely asymptomatic. I was one of them. We call them "silent celiacs" They don't seem to have GI distress or maybe it's so minor and infrequent it's not really noticeable. They can be in that state for years until the damage to the villi progresses to a critical point or they begin to develop other health issues that they didn't understand were related to celiac disease. With me, I had very little GI distress but my liver enzymes were elevated. Took 13 years to get that run down and connected to celiac disease. Soon as I adopted the gluten free diet, the liver enzymes normalized. I am blessed that no permanent damage seems to have been done to my liver. Long term, unaddressed (with a gluten free diet) celiac disease can damage other body systems besides the small bowel. Another example is neurological damage that is often not reversible. 

The EMA was the first blood antibody test to be developed for celiac disease. It has largely been replaced by the tTG-IGA. The EMA is more expensive to run as it requires the use of organ tissue I believe. The tTG-IGA is just as effective.

"everyone I know that has a gluten intolerance or celiac cannot tolerate gluten at all have tested negative for celiac." Huh?

[Shining My Light]

@trents - sorry, I know that didn’t make sense. I need to get better at rereading the things I write. 
 

The people I know of that have a gluten sensitivity or intolerance have tested negative for celiac. They can’t have gluten of any kind without having a reaction. That to me isn’t helpful. If I reacted to gluten I wouldn’t eat it regardless of it being celiac or not. I’ve come to learn the real issue with celiac is the damage, not the intolerance. 
 

Gliadin Deamidated is another test I’ve seen that I wanted to get done. Also, the genetic testing. HLA-DQ2 and HLA-DQ8.

Although my liver levels are not elevated now, I went through a time when they were. I would say maybe 7 years ago. I also had major GI symptoms at that time. They had ordered a EGD then but I chickened out. This makes me even more confused. I would think that if celiac were the cause my liver numbers wouldn’t have improved. Which again makes me think more of IBD being the cause of my TTG levels being elevated. 

One thing that would make me motivated above all else is the neurological aspect. I’m still trying to dive deeper into that which has me the most interested. I think GI issues are an obvious symptom, it’s the connection in the rest of the body, particularly brain function that is most intriguing. 
 

 

 

 

[trents]

All that is exactly why you should have an endoscopy with a biopsy of the small bowel lining done. It's a very simple procedure and in the US they put you under for it so there is no discomfort. You don't even have to do a cleanout like you do for a colonoscopy. 

It might also be wise to wait a few months and get the tTG-IGA checked again if nothing else. If it elevated now due to some temporary infectious process, it should not remain elevated. But a biopsy would distinguish between IBD and celiac disease.

And remember, the diagnosing of diseases is often not a black and white, cut and dry process. You often have to weigh all the evidence and just go with what is most likely the cause. When tTG-IGA is elevated, the most likely cause is celiac disease. And the gold standard test for diagnosing celiac disease is still the endoscopy with biopsy.

But if you decide to go for further testing for celiac disease of any kind, you must not first embark on the gluten free diet.

[Shining My Light]

Thank you @trents! This is all sound advice.

In 2022 I did have a biopsy done with the EGD:

SPECIMEN: (A) DUODENUM, BIOPSY (B) GASTRIC BIOPSY(C) GASTRIC POLYP, BIOPSY(D) ESOPHAGUS BIOPSY (E) ESOPHAGUS BIOPSY

This would have been when the candida was found. 

If I understand right it’s the duodenum they take a biopsy of. Nothing was mentioned about Villous atrophy however they were not looking for that particularly. 
 

Something that stumps me is the correlation between symptoms and damage. One seems to equal the other. I have yet to see damage with “silent celiac”. Not saying it doesn’t exist.  Also super curious on other symptoms that would improve based on a gluten free diet. Obviously silent celiac wouldn’t have an improvement in GI symptoms but that is all I have read any data for. No one saying things like my anxiety went away or my headaches and joint pain are gone. 
 

I see why it would be a “gluten challenge” since eating 4-6 slices of bread daily is a challenge to do. 😳 I would replace that with cake 🍰😉 

[trents]

That's just it. When they are doing an EGD, even with biopsy, if they aren't thinking about celiac disease they may miss it. They should take several samples from both the duodenum and the duodenum bulb. Damage can be patchy and easily missed if sampling isn't through. And patch damage may explain lack of dramatic symptoms.

Let me assure you that we frequently have posters on this forum who were silent celiacs for years and were diagnosed incidentally with celiac disease when their docs were checking for other things. They developed other medical problems such as anemia or vitamin and mineral deficiencies, neurological deficits, Hashimodo's thyroid, osteoporois, etc. - non GI symptoms - but their docs recognized those problems as often connected to celiac disease and had them checked for celiac disease, both blood antibody testing and biopsy, and found damage.

A couple of years ago the Mayo Clinic did a large study involving over 300 people. They started with those officially diagnosed with celiac disease and also tested their first degree relatives. They found that almost 50% of  the first degree relatives tested positive for celiac disease and many or most were totally caught by surprise because they were largely asymptomatic. Their diagnosis was confirmed by biopsy.

I really don't have anything more to say. You have some decisions to make.

[RMJ]

19 hours ago, Shining My Light said:

Something that stumps me is the correlation between symptoms and damage. One seems to equal the other. I have yet to see damage with “silent celiac”. Not saying it doesn’t exist.  Also super curious on other symptoms that would improve based on a gluten free diet. Obviously silent celiac wouldn’t have an improvement in GI symptoms but that is all I have read any data for. No one saying things like my anxiety went away or my headaches and joint pain are gone. 

Damage with silent celiac exists. I am a silent celiac.  I was tested because I have the gene predisposing to celiac disease and migraines.  All of my antibodies were high (TTG IgA, TTG IgG, DGP IgA, DGP IGG, EMA). I had a biopsy which showed damage. After going gluten free I felt better overall and have more energy. Unfortunately it didn’t help the migraines.

Sorry to be blunt and write this, but it sounds like you’re really in denial about the possibility of having celiac disease. Understandable, and not uncommon on this forum.

[Shining My Light]

Thank you @trents! 
 

I have been going back and forth on some gluten free some days and some days not trying to see if there is any reaction to how I feel. 
 

As much as I don’t want to I think given the blood test not being 100%. It’s fair to say an EGD is necessary. 

I do think before I go through with that I would run another TTG IGA if my doctor would approve that. If levels are the same, I have no choice. 😔 
 

In the mean time I’m going to enjoy gluten.
The biggest problem I have is the thought of eating 4-6 slices of bread per day. That’s crazy! There has to be something comparable. Possibly an “average” of about that per day? Is there any lists of foods out there that are trade offs? (4 slices is = 1 donut) 

[Shining My Light]

Hi @RMJ,

 

Thank you for you input. I really appreciate all view points on this, more than you know. 

Maybe I’ve done too much research. One thing I read would point to yes and then along comes all these variables that convinces me that my levels were high because of having a virus. 

I don’t like bread or pasta that much but seriously love baked goods. 

I’m scared to give those up “for no reason” 

I’m also scared to be doing damage to my body. 
 

I’m stuck in a situation where I’m scared and confused either way. 
 

It’s hard for people with silent celiac because you don’t “feel” like you are doing the right thing. 
 

I did see some advertisements on here about Giliad X? Is that a supplement for gluten and is insulin for diabetes? 

[trents]

@Shining My Light, what do you mean when you say "the blood test not being 100%"? Were you expecting all possible celiac blood antibody tests to be positive in the case of someone who actually does have celiac disease? That seldom, if ever, happens.

You are gauging too much on how you feel when you consume gluten and not paying enough attention to test results.

If the idea of eating 4-6 slices of wheat bread daily to get 10g of gluten is repulsive to you then go the health food store and buy powdered gluten, weigh it out on a food scale, and make shakes with it.

Many report that Gliadin X helps them in a significant way to ward off unpleasant reactions to minor gluten exposure, such as you would get in a cross contamination situation. It will not work to prevent reactions when used with large exposures to gluten.

Edited June 14 by trents

[RMJ]

I can’t imagine eating 4-6 slices of bread per day, either.  You just need wheat, it doesn’t have to be bread and it doesn’t have to whole wheat. If a piece of cake or a doughnut is about the same size as a slice of bread it’s probably roughly equivalent. Or you could do what Trents suggests and just buy powdered gluten.

Gliadin X can help by “digesting” small amounts of gluten contamination.  You would NOT want to take it while eating bread/cake/doughnuts in preparation for an endoscopy because it could make your body react less.

I have finally figured out how to make a number of gluten free baked goods. Cakes, cream puffs . . . My neighbors know they are gluten free but say they would never guess otherwise.

[Shining My Light]

@trents I do like the idea of the shake! 

yes. I was expecting to have all my blood tests that were celiac related to be positive. I guess I’m confused about why they wouldn’t be. Nothing else in my blood work even gave a clue as to helping me either. All my vitamins were good other than D and that’s everyone in my state. 

 

@RMJ how impressive to be able to make all those baked goods! I’ve been tasting some gluten free items. There is one thing I found that’s good and it’s Siete Cinnamon churro chips put over ice cream with chocolate syrup . Tastes like fried ice cream! 

I’ve also noticed so many more things have a “gluten free” symbol on them. Restaurants mostly but also a lot of packaging. Maybe it’s always been there but obviously since my blood tests I’ve noticed. 

I really hoped I would find someone who like me was sick a few weeks prior to getting their  TTG test and it was raised for a viral reason, or it’s a “fluke” or something else.  

 

 

[trents]

@Shining My Light, I am not a doctor or a trained medical professional of any kind. However, I was a hospital chaplain for many years and sat in on countless numbers of medical team meetings with doctors and nurses discussing the medical issues of their patients as well as tests administered and interventions applied. What I can tell you is that many diseases can only be diagnosed by running a battery of tests coming at the problem from different angles. It is normal to not have all the tests give a positive confirmation for a given disease. But rather, a diagnosis is arrived at by looking at what the balance of the test results from all angles suggest. This may especially be true of autoimmune conditions.

You need to also understand that the degree and number of vitamin and mineral deficiencies and symptomology depends on a number of factors. For instance:

1. How many "celiac genes" are involved? Homozygous or heterozygous? and which genes? DQ2?, DQ8? or both?

2. How long ago was the onset of the celiac disease? How long has it been acting on the body? 10 months or 10 years? That will make a huge difference.

3. How much gluten has the person been accustomed to consuming since onset of celiac disease? The more they consume, the more damage you would expect.

4. What is the age of the person? Younger people have bodies that are more resilient than older people and can fight against disease more effectively.

5. What other health conditions is their immune system being tasked to deal with?

6. What is their general state of vigor? Some people just have stronger constitutions than others.

Edited June 14 by trents

[Shining My Light]

@trents This info is so helpful and I’m absorbing it all.

My blood tests were almost a month ago and I feel like it came out of left field. I never even heard of term “silent celiac.” I thought celiac gave you violent diarrhea when you consumed a tiny bit of gluten. That’s it. Not that it damages your small intestine, not that it made the absorption of vitamins and minerals compromised. None of it. To me it was just an allergy to gluten. 

My close family and friends think I’m crazy for even giving it a second thought because “no symptoms, no worries.” 

It’s unfortunately hard for me to let something go that I don’t know enough about. Therefore all the research came into play. 

I’m glad I’ve joined this forum. It’s more helpful to talk things through with people than looking through cases studies without being able to ask questions.

I’m on the fence right now on what my odds are. I don’t know enough about the other variables and probability of why a TTG level would be raised. 

The questions I still have lingering are: 

-what are the odds that these levels are raised in something other than celiac? For instance of all positive TTG tests that have been done how many of those are from celiac? I know it’s a big ask but to me that’s something that is super unclear to me. 

- what are the TTG levels in something other than celiac? (I.e. in things like type 1 diabetes, rheumatoid arthritis, hepatitis, viruses, NCGS, etc, are the TTG levels the same as those that have celiac, higher or lower?) 

- even if it’s not celiac and it’s NCGS, if my body is “responding” to gluten, and creating antibodies to it, wouldn’t that be something to avoid anyway? Maybe not doing the damage but still my body doesn’t like it? 

-could I really possibly follow a gluten free life as close as I follow Jesus? 

Definitely understand now that key piece of needing an EGD. It’s looking at things from another angle. Also with all the other associated blood work, more angles. 

I would like to say please forgive me if any of my questions seem as though I’m trying to be difficult. Making lifelong decisions is hard. 

I do have decisions to make as you have said. I clearly will need convinced in order for this to be something to be committed to. 

I would hope that there will be something in the future that comes out that will offset gluten in bodies the same was it does for sugar in diabetics. 

My compassion is far greater for anyone carrying the burden of celiac than it was a month ago knowing what I know now. 

I appreciate you helping me work this out, in real time. It’s been lonely up to this point. Only me talking about what I’ve read to people who don’t think I should be bothering with it any further. 😆 So thank you! 🙏
 

 

 

 

 

 

[trents]

First, I hope you know that celiac disease is not an allergy to gluten. It is an autoimmune disease reaction that is triggered by gluten consumption. Allergies don't trigger immunes responses whereby the body attacks it's own tissues but this is what is actually happening with celiac disease and what distinguishes celiac disease from NCGS (Non Celiac Gluten Sensitivity). 

Second, though I think your question other question has already been answered. Since the tTG-IGA antibody test is only 90 to 98% specific, elevated values for this test will be have non-celiac disease causes in 2 to 8 out of 100 cases. I realize that is addressing your question in a general way but the non-celiac causes have also be covered in this thread, though not to  the granularity of giving percentages to each non-celiac cause. Not sure why that is important to you at this point. First, you need to separate whether it is due to celiac disease or not. If not, then start sorting out what the other cause is. But as I stated above, by far the most likely cause is celiac disease so that is the place to start.

Sure, we get it. Having  to eliminate gluten from your life spells huge culinary and social changes and challenges. But it's still better than facing cancer or host of other diseases that less definitive antidotes and outcomes. With celiac disease you don't even have to worry about taking medications because, as of now at least, there are none. The treatment is very straightforward. Avoid gluten.

[trents]

Also, concerning your apprehension about family pushback, you might relate to this: 

 

[knitty kitty]

@Shining My Light,

While you're trying to decide on your next steps on your journey, I suggest you have a DNA test to look for Celiac genes.  Your genes don't change, so you do not have to be eating gluten for it.  If you have even one Celiac gene, it's more likely to be celiac disease, than NCGS.  TTg antibodies do not occur in NCGS.  

There are different amounts of gluten in different breeds of wheat.  Wheat used for cookies and cakes and tortillas do not contain as much gluten as wheat used for bread and pizza crust. 

Look at the crumb in cakes and tortillas.  There's only small bubbles. Gluten is in the matrix forming those bubbles.  Compare those to the big bubbly holes in artisan bread and chewy pizza crust.  To get those big holes, more stretchy elastic gluten is used.  

You are subconsciously avoiding those types of foods with large amounts of serious gluten in them.  Consider including these types of high gluten foods in your gluten challenge before your antibody retest and endoscopy.  Keep a food mood poo'd journal to record how symptoms change.  

Anxiety, headaches and joint pain are symptoms of Celiac that occur outside the digestive tract, these are extraintestinal symptoms of celiac disease.

"Could I really possibly follow a gluten free life as close as I follow Jesus?"    Yes, He's been my constant companion and guide on this journey which has brought us to the forum so we can help others on their journeys.  

References:

Celiac Disease: Extraintestinal Manifestations and Associated Conditions

https://pmc.ncbi.nlm.nih.gov/articles/PMC6895422/

Psychiatric and Neurological Manifestations of Celiac Disease in Adults

https://pmc.ncbi.nlm.nih.gov/articles/PMC9984242/#:~:text=celiac disease%2C a multiorgan disorder with,life [21%2C22].

[trents]

knitty kitty brought up something that also occurred to me. Namely, the reason you don't like bread and pasta may be that your body has been instinctively telling you, "this is harming me" and so you avoid it. Cake, on the other hand, has less gluten and lots of other goodies like sugar and butter and chocolate that mask what gluten there is.

[Shining My Light]

@trents I’m pretty sure what I’m left with when separating celiac to other causes is my 10% being a virus. The one I had about 3 weeks before taking this TTG test. Everything I’ve read says type 1 diabetes, rheumatoid arthritis, hepatitis and some viruses are what could cause the elevation. The other blood tests I had I can compare things against. 

I’m going to give your article a thorough read. My support in my circle is very small at the moment. 

@knitty kitty I think before EGD I would like to do the DNA test. I’m going to start keeping a better journal also. 

I’ve read a crazy amount of these “articles” - these two I’ve not seen. Some articles spell celiac differently. Thank you for sharing! I’m gonna dive into those.  

I started seeing the functional medicine doctors from fluctuations in my hormones and major anxiety. Recently I realize it’s mostly health anxiety also so this is more challenging to depict real from imaginary thus all the research and the back and forth. I know anxiety to be a common symptom in perimenopause. I’ve fought it my whole life however. Likely due to lots of different trauma but seeing her was my last ditch effort to try something to avoid SSRIs, HRT, etc. She told me not to blame everything on my hormones when there could be an underlying problem, so she ran some tests to see if anything stood out. The TGG tests stood out. 

I do find it very interesting now that I think about it that I don’t desire bread, pasta and pizza. Sometimes yes, but mostly no. I guess I didn’t give that much thought. Also didn’t realize that those foods do contain more gluten than the tortillas and cake/baked goods. About 3 months ago I started ordering meal kits to make dinner easier. I went back over the menus that I picked. I have probably had bread and pasta a hand full of times over the last couple months prior to having that blood test. We used to get pizza every Friday and stopped doing that also. I’m all fairness about 2 months leading up to these blood tests I had less gluten containing foods than I thought. 
 

I’ve been praying for wisdom. Thankful to find some counsel from people who I believe have dove harder into this than most doctors have.

Thanks for all the advice. It’s appreciated more than you know. 💕

[knitty kitty]

@Shining My Light,

Yes, celiac is spelled differently in Great Britain.  Yes, please do consider us as part of your support circle.  

I had a serious Vitamin D deficiency, too.  I learned Vitamin D acts as a hormone when at levels between 78-100 nmol/L.  Mine was in the single digits.  I had been in declining health for years without answers.  I had developed hormone problems and clinical depression among other symptoms.  I corrected my Vitamin D deficiency with high doses to get my level up quickly.  Yes, it's safe.  Here's some studies done on high dose Vitamin D.

https://pubmed.ncbi.nlm.nih.gov/34737019/

https://pubmed.ncbi.nlm.nih.gov/39125420/

https://pubmed.ncbi.nlm.nih.gov/35470105/

https://pubmed.ncbi.nlm.nih.gov/30611908/

My Vitamin D deficiency was just the tip of the deficiency iceberg.  I was deficient in the B vitamins, too.  Celiac Malabsorption affects all the vitamins and minerals, not just one.  Here are some articles about how the B vitamins and even Vitamin D help lower anxiety...

https://pubmed.ncbi.nlm.nih.gov/33848753/

https://pubmed.ncbi.nlm.nih.gov/35156551/

https://pubmed.ncbi.nlm.nih.gov/35851507/

https://pubmed.ncbi.nlm.nih.gov/35851507/

https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/

[Shining My Light]

@knitty kitty I had an injury from assuming I could do work outs at the gym like I did in my 20s 😏. it didn’t work in my favor. My orthopedic doctor told me to go on 50,000IU /per week for 4-6 weeks for a boost and then do a maintenance. I took 2 and got nervous to take any more, it seemed so high to me. About 7  months later I had a blood test revealing that my Vit D levels are lower than normal. I started taking vit D supplements-4000IU./a day now. (the natural garden of life ones) I had a friend whose levels were low and she was having a mental breakdown. 

My B12 levels were right in the middle of the range. 

 

 

[trents]

Early guidelines from years ago concerning D3 supplementation was unduly conservative. There was fear of toxicity in over-supplementing because D3 is a fat soluble vitamin and not a water soluble vitamin. More recent studies have shown we can supplement safely at considerably higher levels for extended periods. But yes, 50,000 IU would not be safe over an extended period of time. That much is a kick start dose.