Celiac, NCGS, or allergy?

[Emmy208]

Hi there I’m new here. I’ve been having fatigue/digestive issues for years now, but ever since getting COVID a few months ago, they’ve been significantly worse. The fatigue has been so bed it’s hard to get out of bed. I’ve also struggled with nausea, bloating, constipation (and sometimes diarrhea), headaches, and body aches. Additionally, I’ve been showing possible signs of malabsorption (peeling brittle nails covered with tons of white spots, and—this is a bit TMI sry—poop that’s either yellow or gold). Last month, I got a very thorough blood test (including a celiac panel). Right after the blood test, I was so done with feeling bad that I decided to eat gluten-free. Within about a week, I started to notice ALL of my symptoms were improving. Additionally, there was an itchy red rash I’ve had for several years that started healing within a week. After 2ish weeks on the gluten-free diet, I noticed all of my symptoms had disappeared almost completely, except they would resurface about 24 hours after accidentally consuming gluten (soy sauce) or eating something likely to be cross-contaminated (Cheerios) and I’d be extremely sick for 1-2 days. Now, after being gluten-free for 3 weeks, the rash has almost healed completely. 
 

I got back the results of the blood test two weeks ago. 
I was deficient in zinc and iron even tho I eat lots of foods with those vitamins which  seemed weird to me (again, maybe malabsorption?). My T4 was also low. Surprisingly, I was negative for celiac (I had IgA, EMA, and IgG done, and I made sure to eat gluten every day before the blood test). I was positive for wheat allergy on the blood test, but I’m not sure if I actually am allergic to wheat since I tested negative for wheat allergy on a skin test three months ago and IgE reactions typically happen in 4 hours or less compared to 24 hours like what happens with me. So I was thinking maybe I have NCGS, but it doesn’t make sense why I’d feel so sick after accidental cross contamination since people with NCGS can eat small amounts of gluten and be ok (my mom has NCGS and no reactions to tiny amounts of gluten or cross contamination). Plus idk why I have signs of malabsorption since that doesn’t happen with NCGS (although maybe I could also have SIBO or another condition?). So because of that I’m wondering if the wheat allergy blood test was a false positive and the celiac blood test was a false negative? Is it possible that I could not be IgA deficient and have eaten enough gluten but still tested negative? 
 

I have a doctor’s appt soon to go over my test results. I’m not sure if I want to get an endoscopy bc I know going on gluten makes me sick, but I am considering asking about getting a genetic test to see if me having celiac is a possibility. I know a lot of ppl have the genes for celiac, but if I have DQ2 and DQ8 and celiac-like symptoms that improve when going off of gluten, I’m thinking it’s pretty likely I do have celiac. 
 

Do you guys have think it’s possible the celiac blood test was a false negative? It could just be that I have NCGS and some other GI condition but I’m kind of suspicious honestly. 

[trents]

Welcome to the forum, Emmy208!

Which IGA was done? There's more than one IGA test for celiac disease. The most popular one is the tTG-IGA. In addition to that, total serum IGA should be tested for because if it is low it can cause false negatives in the IGA tests that are specifically designed to detect celiac disease.

It is no more true that people with NCGS can get away with eating small amounts of gluten than it is for those with celiac disease. In fact, many celiacs are "silent" and have no discernible distress when consuming larger amounts of gluten, at least no until damage to the villi of the small bowel is very advanced. Celiacs vary enormously in their sensitivity to trace amounts of gluten and so do those with NCGS.

SIBO and H. Pylori and MCAS are all very common in the celiac population.

Edited August 5, 2023 by trents

[knitty kitty]

@Emmy208, Welcome to the forum!

Can you post your blood test results here?  

A Total IgA test needs to be done whenever a tTg-IgA test is run.  If the Total IgA is low, a false negative results.  Anemia (as in iron deficiency anemia or B12 deficiency anemia) can cause false negatives.  Not only will red blood cell counts be low, but white blood cell counts will be low.  The white blood cells are your antibodies. 

Did your doctor check your B12 level?  What are you doing to correct your iron and zinc deficiencies?

That red itchy rash may be Dermatitis Herpetiformis, which only occurs in Celiac Disease.  Having DH is a diagnosis of CeD.  Have you had the rash biopsied by a dermatologist familiar with DH and CeD?   

You said you were eating gluten before the blood tests.  How long were you eating gluten prior to testing?  What type of gluten containing foods were you consuming and how much?  Are you still consuming dairy?

The way to tell NCGS from Celiac is by looking for damage in the small intestine.  Celiac people have flattened villi.  NCGS people do Not have damage to the villi.  

An endoscopy would give you a baseline with which to compare future biopsies.  You would learn the level of damage to your small intestine currently and track progression of healing in future.

However, since you've gone gluten free already, healing in the intestine would have started and an endoscopy and biopsy would reflect that.  Your gastroenterologist needs to be aware you're no longer consuming gluten and may want you to restart the gluten challenge before the endoscopy.  Restarting gluten challenges after being gluten free can cause a redoubled autoimmune response worse than before.  

People with CeD can have an autoimmune response to gluten as well as an allergy to wheat (IgE response) or other foods.   

I was diagnosed by genetic testing and improvement of symptoms on a gluten free diet.  I have DQ 2 and DQ 8 genes.  I also have Dermatitis Herpetiformis.  I have diabetes, which can also cause false negatives on Celiac testing.  My symptoms were much like yours.  I had serious nutritional deficiencies.  I had SIBO and histamine intolerance/Mast Cell Activation Syndrome (MCAS).  I followed the Autoimmune Protocol Diet (Paleo diet) and supplemented with vitamins and minerals.  My health began to improve.  

Do get your gallbladder checked (the gastroenterologist can check it during endoscopy).  Yellow poop is a sign of gallbladder dysfunction caused by Thiamine Vitamin B 1 deficiency.  Gallbladder dysfunction is common in Celiac Disease.  

Here are links to some helpful articles...

IgE-Dependent Allergy in Patients with Celiac Disease: A Systematic Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9960367/

And...

Celiac Disease Frequency Is Increased in IgE-Mediated Food Allergy and Could Affect Allergy Severity and Resolution

https://pubmed.ncbi.nlm.nih.gov/36574002/

 

Hope this helps you decide which path to diagnosis to take!

[Emmy208]

On 8/4/2023 at 6:54 PM, trents said:

Welcome to the forum, Emmy208!

Which IGA was done? There's more than one IGA test for celiac disease. The most popular one is the tTG-IGA. In addition to that, total serum IGA should be tested for because if it is low it can cause false negatives in the IGA tests that are specifically designed to detect celiac disease.

It is no more true that people with NCGS can get away with eating small amounts of gluten than it is for those with celiac disease. In fact, many celiacs are "silent" and have no discernible distress when consuming larger amounts of gluten, at least no until damage to the villi of the small bowel is very advanced. Celiacs vary enormously in their sensitivity to trace amounts of gluten and so do those with NCGS.

SIBO and H. Pylori and MCAS are all very common in the celiac population.

I had tTG-IgA, deamidated gliadin peptide IgA and IgG, and EMA-IgA done, which were all negative. I also had H. Pylori IgM and IgG tested and was negative. That’s interesting that total serum IgA should also be tested I didn’t know that. 

[Emmy208]

On 8/4/2023 at 8:01 PM, knitty kitty said:

@Emmy208, Welcome to the forum!

Can you post your blood test results here?  

A Total IgA test needs to be done whenever a tTg-IgA test is run.  If the Total IgA is low, a false negative results.  Anemia (as in iron deficiency anemia or B12 deficiency anemia) can cause false negatives.  Not only will red blood cell counts be low, but white blood cell counts will be low.  The white blood cells are your antibodies. 

Did your doctor check your B12 level?  What are you doing to correct your iron and zinc deficiencies?

That red itchy rash may be Dermatitis Herpetiformis, which only occurs in Celiac Disease.  Having DH is a diagnosis of CeD.  Have you had the rash biopsied by a dermatologist familiar with DH and CeD?   

You said you were eating gluten before the blood tests.  How long were you eating gluten prior to testing?  What type of gluten containing foods were you consuming and how much?  Are you still consuming dairy?

The way to tell NCGS from Celiac is by looking for damage in the small intestine.  Celiac people have flattened villi.  NCGS people do Not have damage to the villi.  

An endoscopy would give you a baseline with which to compare future biopsies.  You would learn the level of damage to your small intestine currently and track progression of healing in future.

However, since you've gone gluten free already, healing in the intestine would have started and an endoscopy and biopsy would reflect that.  Your gastroenterologist needs to be aware you're no longer consuming gluten and may want you to restart the gluten challenge before the endoscopy.  Restarting gluten challenges after being gluten free can cause a redoubled autoimmune response worse than before.  

People with CeD can have an autoimmune response to gluten as well as an allergy to wheat (IgE response) or other foods.   

I was diagnosed by genetic testing and improvement of symptoms on a gluten free diet.  I have DQ 2 and DQ 8 genes.  I also have Dermatitis Herpetiformis.  I have diabetes, which can also cause false negatives on Celiac testing.  My symptoms were much like yours.  I had serious nutritional deficiencies.  I had SIBO and histamine intolerance/Mast Cell Activation Syndrome (MCAS).  I followed the Autoimmune Protocol Diet (Paleo diet) and supplemented with vitamins and minerals.  My health began to improve.  

Do get your gallbladder checked (the gastroenterologist can check it during endoscopy).  Yellow poop is a sign of gallbladder dysfunction caused by Thiamine Vitamin B 1 deficiency.  Gallbladder dysfunction is common in Celiac Disease.  

Here are links to some helpful articles...

IgE-Dependent Allergy in Patients with Celiac Disease: A Systematic Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9960367/

And...

Celiac Disease Frequency Is Increased in IgE-Mediated Food Allergy and Could Affect Allergy Severity and Resolution

https://pubmed.ncbi.nlm.nih.gov/36574002/

 

Hope this helps you decide which path to diagnosis to take!

I don’t have a copy of my blood test results-I saw them briefly at another doctor’s office but they haven’t been uploaded to my patient portal for some reason. I think I have iron deficiency without anemia since my hemoglobin was in the normal range. I did see on my test tho that I had high neutrophils and low lymphocytes, so I’m not sure if that would affect anything? I’m currently on magnesium supplements and am seeing my doctor soon to go over the blood test results, so I’ll figure out what to do about the zinc and iron deficiency then. My B12 was fine. 
 

I am unable to get an endoscopy for at least several months now since I am going away to school soon, but it’s possible I could get one done on break. I just don’t want to have to eat gluten since it’ll make me feel sick…that’s why I was thinking it would be better to do a genetic test for DQ2 and DQ8, since I don’t have to eat gluten again and could get it done before school or while I’m at school easily. If I test positive for DQ2 and DQ8, I will probably get an endoscopy on break or over the summer. 
 

thank you so much for the articles, I will def read them! 

[trents]

You have had several celiac antibody tests run and they were all negative with the caveat that we don't know if you were IGA deficient. But based on the data we do have it doesn't look like celiac disease. So, I would lean toward NCGS with some other complications.

[Emmy208]

Just now, Emmy208 said:

I don’t have a copy of my blood test results-I saw them briefly at another doctor’s office but they haven’t been uploaded to my patient portal for some reason. I think I have iron deficiency without anemia since my hemoglobin was in the normal range. I did see on my test tho that I had high neutrophils and low lymphocytes, so I’m not sure if that would affect anything? I’m currently on magnesium supplements and am seeing my doctor soon to go over the blood test results, so I’ll figure out what to do about the zinc and iron deficiency then. My B12 was fine. 
 

I am unable to get an endoscopy for at least several months now since I am going away to school soon, but it’s possible I could get one done on break. I just don’t want to have to eat gluten since it’ll make me feel sick…that’s why I was thinking it would be better to do a genetic test for DQ2 and DQ8, since I don’t have to eat gluten again and could get it done before school or while I’m at school easily. If I test positive for DQ2 and DQ8, I will probably get an endoscopy on break or over the summer. 
 

thank you so much for the articles, I will def read them! 

Oh and that’s a good idea to get the rash checked by a dermatologist to see if it is DH! It has almost disappeared now but if I went on a gluten challenge I’m guessing it would come back. Worth a try when I’m on break. 
 

And I was eating gluten probably almost every day for a year. Some days I wouldn’t eat gluten but other days I’d eat gluten at multiple meals. So I’m not sure if that would cause a false negative too…probably not right? I am also still having dairy but it doesn’t give me stomachaches if I take a lactaid (was thinking this could have been celiac since my lactose intolerance started around a year ago, but to be fair a lot of ppl in my family have issues with dairy too so I’m not sure). 

2 minutes ago, trents said:

You have had several celiac antibody tests run and they were all negative with the caveat that we don't know if you were IGA deficient. But based on the data we do have it doesn't look like celiac disease. So, I would lean toward NCGS with some other complications.

Ok that’s helpful. I’ll ask the doctor if it’s worth it to test for DQ2 and DQ8, though, just to make sure. 

[trents]

8 minutes ago, Emmy208 said:

Oh and that’s a good idea to get the rash checked by a dermatologist to see if it is DH! It has almost disappeared now but if I went on a gluten challenge I’m guessing it would come back. Worth a try when I’m on break. 
 

And I was eating gluten probably almost every day for a year. Some days I wouldn’t eat gluten but other days I’d eat gluten at multiple meals. So I’m not sure if that would cause a false negative too…probably not right? I am also still having dairy but it doesn’t give me stomachaches if I take a lactaid (was thinking this could have been celiac since my lactose intolerance started around a year ago, but to be fair a lot of ppl in my family have issues with dairy too so I’m not sure). 

Ok that’s helpful. I’ll ask the doctor if it’s worth it to test for DQ2 and DQ8, though, just to make sure. 

Genetic testing is only good for ruling out celiac disease since 40% of the population has at least one of the genes having been tied to celiac disease. If you don't have any of them (actually, I think they now have identified a third gene) then you rule celiac disease out.

[shadycharacter]

On 8/5/2023 at 2:15 AM, Emmy208 said:

Hi there I’m new here. I’ve been having fatigue/digestive issues for years now, but ever since getting COVID a few months ago, they’ve been significantly worse. The fatigue has been so bed it’s hard to get out of bed. I’ve also struggled with nausea, bloating, constipation (and sometimes diarrhea), headaches, and body aches. Additionally, I’ve been showing possible signs of malabsorption (peeling brittle nails covered with tons of white spots, and—this is a bit TMI sry—poop that’s either yellow or gold). Last month, I got a very thorough blood test (including a celiac panel). Right after the blood test, I was so done with feeling bad that I decided to eat gluten-free. Within about a week, I started to notice ALL of my symptoms were improving. Additionally, there was an itchy red rash I’ve had for several years that started healing within a week. After 2ish weeks on the gluten-free diet, I noticed all of my symptoms had disappeared almost completely, except they would resurface about 24 hours after accidentally consuming gluten (soy sauce) or eating something likely to be cross-contaminated (Cheerios) and I’d be extremely sick for 1-2 days. Now, after being gluten-free for 3 weeks, the rash has almost healed completely. 
 

I got back the results of the blood test two weeks ago. 
I was deficient in zinc and iron even tho I eat lots of foods with those vitamins which  seemed weird to me (again, maybe malabsorption?). My T4 was also low. Surprisingly, I was negative for celiac (I had IgA, EMA, and IgG done, and I made sure to eat gluten every day before the blood test). I was positive for wheat allergy on the blood test, but I’m not sure if I actually am allergic to wheat since I tested negative for wheat allergy on a skin test three months ago and IgE reactions typically happen in 4 hours or less compared to 24 hours like what happens with me. So I was thinking maybe I have NCGS, but it doesn’t make sense why I’d feel so sick after accidental cross contamination since people with NCGS can eat small amounts of gluten and be ok (my mom has NCGS and no reactions to tiny amounts of gluten or cross contamination). Plus idk why I have signs of malabsorption since that doesn’t happen with NCGS (although maybe I could also have SIBO or another condition?). So because of that I’m wondering if the wheat allergy blood test was a false positive and the celiac blood test was a false negative? Is it possible that I could not be IgA deficient and have eaten enough gluten but still tested negative? 
 

I have a doctor’s appt soon to go over my test results. I’m not sure if I want to get an endoscopy bc I know going on gluten makes me sick, but I am considering asking about getting a genetic test to see if me having celiac is a possibility. I know a lot of ppl have the genes for celiac, but if I have DQ2 and DQ8 and celiac-like symptoms that improve when going off of gluten, I’m thinking it’s pretty likely I do have celiac. 
 

Do you guys have think it’s possible the celiac blood test was a false negative? It could just be that I have NCGS and some other GI condition but I’m kind of suspicious honestly. 

Wheat allergy is quite complex because there are several different wheat allergens and it is possible to have delayed reactions, so I wouldn't rule out allergy. 

[Emmy208]

22 hours ago, shadycharacter said:

Wheat allergy is quite complex because there are several different wheat allergens and it is possible to have delayed reactions, so I wouldn't rule out allergy. 

I didn’t know that thank you! 

[Emmy208]

Update: I had my appt with the doctor. She said that blood test was a food sensitivity test (IgG) and not IgE allergy, and mine was only slightly high so it shouldn’t bother me terribly if I have wheat sometimes. However this is def not the case for me — yesterday I thought it was ok to toast a gluten-free bagel in the family toaster since I washed the metal rack with soap and water. This morning I woke up feeling super nauseous, bloated, and tired. I’ve had alternating diarrhea (type 6 on the scale) and constipation (type 1). In addition to all of that I noticed my rash was coming back. Almost everyone I’ve met with NCGS is surprised when they hear about my symptoms and tell me “it sounds like I have celiac.” I met another person with celiac who also told me that my symptoms sound like celiac. It could just be a very severe case of NCGS, but my mom now also wants to get me a genetic test to rule out celiac too. I’m going to call the doctor and talk to her about getting it (my nutritionist also thinks I might have celiac even tho I was negative on the blood test). 
 

Another interesting fact—my aunt and cousins also have celiac-like symptoms including a rash that goes away when they eat gluten. Could be that this strain of severe NCGS runs in the family or a lot of us are undiagnosed celiacs idk. 
 

In terms of additional blood tests—I’m going to get a CMP to check for diabetes since I’ve been really thirsty all the time and also to check my liver and kidney function. They also want to test my thyroid again to see if the level is the same before giving me meds. 

[trents]

Emmy208, you typed, "Another interesting fact—my aunt and cousins also have celiac-like symptoms including a rash that goes away when they eat gluten."

Did you mean to type the rash goes away when they stop eating gluten?

[knitty kitty]

@Emmy208,

NCGS is not genetic.  NCGS doesn't run in families.  Celiac Disease is genetic and runs in families.  

Do get the genetic test! 

Do get your Vitamin D level checked.  Low Vitamin D level can affect your thyroid, as can low B 12 level.  You can have Vitamin B 12 deficiency symptoms before your blood levels show an outright deficiency.  Thiamine deficiency can also affect the thyroid and the gallbladder and the kidneys.  

There are eight essential B vitamins that our bodies need to live.  You probably aren't absorbing sufficient nutrients when you have diarrhea and constipation.  It's common in Celiac Disease to have nutritional deficiencies across the board.  Blood tests are not accurate measurements of the amount of vitamins and minerals being used inside cells and tissues.  The stores of vitamins inside cells can be depleted, while blood levels are "normal" in order to supply the brain and heart.

Talk to your doctor and nutritionist about supplementing with vitamins and minerals.   

Keep us posted on your progress!

[trents]

Or at least, if NCGS is genetic we don't know what the genes are yet.

[Emmy208]

On 8/13/2023 at 12:04 PM, knitty kitty said:

@Emmy208,

NCGS is not genetic.  NCGS doesn't run in families.  Celiac Disease is genetic and runs in families.  

Do get the genetic test! 

Do get your Vitamin D level checked.  Low Vitamin D level can affect your thyroid, as can low B 12 level.  You can have Vitamin B 12 deficiency symptoms before your blood levels show an outright deficiency.  Thiamine deficiency can also affect the thyroid and the gallbladder and the kidneys.  

There are eight essential B vitamins that our bodies need to live.  You probably aren't absorbing sufficient nutrients when you have diarrhea and constipation.  It's common in Celiac Disease to have nutritional deficiencies across the board.  Blood tests are not accurate measurements of the amount of vitamins and minerals being used inside cells and tissues.  The stores of vitamins inside cells can be depleted, while blood levels are "normal" in order to supply the brain and heart.

Talk to your doctor and nutritionist about supplementing with vitamins and minerals.   

Keep us posted on your progress!

Hey, I just got the second blood test my doctor requested today. I had a CMP, second thyroid panel, and hemoglobin A1c to rule out diabetes. Thankfully, everything was normal! I was surprised that my T4 went back to normal (it was much higher,  1.05–for reference, my free t4 was 0.9 in May this year and then 0.5 in July but around 1.2 when it had been tested before). Could be just “normal fluctuations,” but it seems a bit drastic to just be “normal fluctuations.” My guess is that the malabsorption is improving (since I last checked—I can’t now because I have nail polish on—the white spots on my nails were starting to fade, and, while my stool is still mainly yellow, I am sometimes starting to see brown spots in it). The doctor did say she thought the low T4 could have been a result of my iron, zinc, and vitamin D deficiencies. I’ve been off of gluten for a little over a month and while I still have some fatigue, stomach pain, muscle aches, and constipation (I am now having a bowel movement almost every day compared to twice a week, but my stool is most often a 1 on the Bristol scale), I am feeling overall much better. 
 

Is it possible that I could have developed celiac disease only a few months ago (since the celiac-like symptoms symptoms mainly started after getting COVID, a little less than a month before the blood test), and the blood test was negative because   I’d just started to develop celiac? 

 

[knitty kitty]

@Emmy208,

Yes, it is very possible for you to have developed Celiac Disease  recently.   An infection often precipitates CeD.  

Did you get the genetic test done?

Genes don't change and you don't have to eat gluten for the test.

Did you talk to your doctor about supplementing with Benfotiamine, a form of thiamine shown to promote healing in the intestines? 

So happy you are improving! 

[trents]

2 hours ago, Emmy208 said:

Hey, I just got the second blood test my doctor requested today. I had a CMP, second thyroid panel, and hemoglobin A1c to rule out diabetes. Thankfully, everything was normal! I was surprised that my T4 went back to normal (it was much higher,  1.05–for reference, my free t4 was 0.9 in May this year and then 0.5 in July but around 1.2 when it had been tested before). Could be just “normal fluctuations,” but it seems a bit drastic to just be “normal fluctuations.” My guess is that the malabsorption is improving (since I last checked—I can’t now because I have nail polish on—the white spots on my nails were starting to fade, and, while my stool is still mainly yellow, I am sometimes starting to see brown spots in it). The doctor did say she thought the low T4 could have been a result of my iron, zinc, and vitamin D deficiencies. I’ve been off of gluten for a little over a month and while I still have some fatigue, stomach pain, muscle aches, and constipation (I am now having a bowel movement almost every day compared to twice a week, but my stool is most often a 1 on the Bristol scale), I am feeling overall much better. 
 

Is it possible that I could have developed celiac disease only a few months ago (since the celiac-like symptoms symptoms mainly started after getting COVID, a little less than a month before the blood test), and the blood test was negative because   I’d just started to develop celiac? 

 

It is possible that your celiac onset was only a few months ago and could have been activated by COVID. But if you had significant vitamin and mineral deficiencies by the time of diagnosis then I would suspect you've had it longer than that. The COVID may have kicked it into a higher gear.

Thyroid hormone levels are kind of like blood pressure. They can vary significantly from one check to the next and can be difficult to get a handle on. Symptoms of T4 imbalance may be a more reliable indicator.

[Emmy208]

On 8/15/2023 at 6:46 PM, knitty kitty said:

@Emmy208,

Yes, it is very possible for you to have developed Celiac Disease  recently.   An infection often precipitates CeD.  

Did you get the genetic test done?

Genes don't change and you don't have to eat gluten for the test.

Did you talk to your doctor about supplementing with Benfotiamine, a form of thiamine shown to promote healing in the intestines? 

So happy you are improving! 

I got the genetic test today. Waiting for the results now 🤞

On 8/15/2023 at 9:34 PM, trents said:

It is possible that your celiac onset was only a few months ago and could have been activated by COVID. But if you had significant vitamin and mineral deficiencies by the time of diagnosis then I would suspect you've had it longer than that. The COVID may have kicked it into a higher gear.

Thyroid hormone levels are kind of like blood pressure. They can vary significantly from one check to the next and can be difficult to get a handle on. Symptoms of T4 imbalance may be a more reliable indicator.

Yeah that’s a good point about the nutrient deficiencies. It could just be that if I have celiac, the antibodies are in my small intestine and not my blood stream-I read some studies that said that can happen.