Can you get a negative blood test and still have Celiac? Help!

[StephNich12]

Hello everyone!

I have so many symptoms of celiac but my blood test came back negative. I've been having major issues for several years (a lot I thought were unrelated) and I tried to see my doctor about it about 6mos to a year into the chronic diarrhea. Thought I had just ruined my gut with habaneros or something, she just said I was probably inflamed and it would take care of itself. Since then I have become gradually more and more lactose intolerant. Decided to take out gluten after Christmas to see if my gut would get any better. To my astonishment ALL of my "unrelated" symptoms disappeared. I was gluten free for there weeks and felt incredible for the most part. Did A TON of research and realized I have almost all the signs of celiac. Went back on gluten for two weeks and had the blood test. Is it possible to get a false negative? I guess I could have non-celiac gluten sensitivity, but can your poop/diarrhea still be yellow if it's non-celiac?? I'm constantly nauseous, have diarrhea and loose stool 4-6 times daily, exhausted all the time, etc., etc., etc. Should I push for more tests? I would really like to know if it's still possible that I might have celiac because that would be a way more strict life change. Still eating gluten at the moment because I'm think I'm gonna try to get a referral and appointment with a GI. What are your thoughts?

[trents]

First, to answer your question, "yes", you can have negative blood tests and still have celiac. We have had a number of reports on this forum to that effect. Blood work is negative but when a endoscopy/biopsy was done if the small bowel lining there was damage. We don't always know why or how the blood work can be negative but the biopsy positive but here are some possibilities:

1. The gluten free diet was begun before the blood work was done which invalidated the antibody testing because inflammation ceased, but the villous lining of the small bowel still showed damage when biopsied. It takes about two years for the villous lining to heal completely. By the way, the Mayo Clinic guidelines for the pre-antibody blood testing "gluten challenge" is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks before the blood draw. You only gave it two weeks!

2. Only one antibody test was done. The most popular antibody test ordered by physicians is the tTG-IGA. It's inexpensive and touted to offer good sensitivity along with good specificity. But it still misses 20% of those who actually do have celiac disease if they are of white European extraction and it misses 80% of those of black African decent. Do you know what blood test or tests were run? Rather than just one test, it is far better to run a "full celiac panel" where several different kinds of antibody tests are run. What one may miss, another may find. We are all different and some folks' immune response is atypical. Can you post your test results so we can see what test or tests were actually run?

3. Your total IGA was low at the time of the blood draw. This drives down the scores of any of the fractional IGA tests like tTG-IGA.

NCGS and celiac disease share many of the same symptoms. Yes, NCGS can produce yellow poop. You may have lactose intolerance but the problem could actually be an intolerance of the milk protein casein. Have you tried lactose free milk? Lactose is the sugar component in milk/dairy.

NCGS is not to be taken lightly and the same diligence one would practice with celiac disease is in order for NCGS. NCGS demands the same strict adherence to the gluten free diet. One of the spinoff diseases that celiac disease and NCGS share is neurological damage/ataxia.

[StephNich12]

2 hours ago, trents said:

First, to answer your question, "yes", you can have negative blood tests and still have celiac. We have had a number of reports on this forum to that effect. Blood work is negative but when a endoscopy/biopsy was done if the small bowel lining there was damage. We don't always know why or how the blood work can be negative but the biopsy positive but here are some possibilities:

1. The gluten free diet was begun before the blood work was done which invalidated the antibody testing because inflammation ceased, but the villous lining of the small bowel still showed damage when biopsied. It takes about two years for the villous lining to heal completely. By the way, the Mayo Clinic guidelines for the pre-antibody blood testing "gluten challenge" is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks before the blood draw. You only gave it two weeks!

2. Only one antibody test was done. The most popular antibody test ordered by physicians is the tTG-IGA. It's inexpensive and touted to offer good sensitivity along with good specificity. But it still misses 20% of those who actually do have celiac disease if they are of white European extraction and it misses 80% of those of black African decent. Do you know what blood test or tests were run? Rather than just one test, it is far better to run a "full celiac panel" where several different kinds of antibody tests are run. What one may miss, another may find. We are all different and some folks' immune response is atypical. Can you post your test results so we can see what test or tests were actually run?

3. Your total IGA was low at the time of the blood draw. This drives down the scores of any of the fractional IGA tests like tTG-IGA.

NCGS and celiac disease share many of the same symptoms. Yes, NCGS can produce yellow poop. You may have lactose intolerance but the problem could actually be an intolerance of the milk protein casein. Have you tried lactose free milk? Lactose is the sugar component in milk/dairy.

NCGS is not to be taken lightly and the same diligence one would practice with celiac disease is in order for NCGS. NCGS demands the same strict adherence to the gluten free diet. One of the spinoff diseases that celiac disease and NCGS share is neurological damage/ataxia.

Thank you so much! This is super helpful! All I kept reading is that NCGS didn't cause damage and it just causes some of the same symptoms. Basically that it was just a sensitivity. So because of no damage I wasn't sure it would cause malabsorption and then yellow poop. And also I wasn't sure how seriously strict I would have to be if that was what I had. And I read so many time frames of how long the gluten challenge had to be. 2-3 weeks kept coming up, and because my doctor said if I'm really suffering take it at two weeks, I thought that would be okay. This is all so new to me. I didn't know anything about celiac until about a month ago. I really appreciate all your help. I'm gonna try to add a screen shot if my test results.

[StephNich12]

2 hours ago, trents said:

First, to answer your question, "yes", you can have negative blood tests and still have celiac. We have had a number of reports on this forum to that effect. Blood work is negative but when a endoscopy/biopsy was done if the small bowel lining there was damage. We don't always know why or how the blood work can be negative but the biopsy positive but here are some possibilities:

1. The gluten free diet was begun before the blood work was done which invalidated the antibody testing because inflammation ceased, but the villous lining of the small bowel still showed damage when biopsied. It takes about two years for the villous lining to heal completely. By the way, the Mayo Clinic guidelines for the pre-antibody blood testing "gluten challenge" is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks before the blood draw. You only gave it two weeks!

2. Only one antibody test was done. The most popular antibody test ordered by physicians is the tTG-IGA. It's inexpensive and touted to offer good sensitivity along with good specificity. But it still misses 20% of those who actually do have celiac disease if they are of white European extraction and it misses 80% of those of black African decent. Do you know what blood test or tests were run? Rather than just one test, it is far better to run a "full celiac panel" where several different kinds of antibody tests are run. What one may miss, another may find. We are all different and some folks' immune response is atypical. Can you post your test results so we can see what test or tests were actually run?

3. Your total IGA was low at the time of the blood draw. This drives down the scores of any of the fractional IGA tests like tTG-IGA.

NCGS and celiac disease share many of the same symptoms. Yes, NCGS can produce yellow poop. You may have lactose intolerance but the problem could actually be an intolerance of the milk protein casein. Have you tried lactose free milk? Lactose is the sugar component in milk/dairy.

NCGS is not to be taken lightly and the same diligence one would practice with celiac disease is in order for NCGS. NCGS demands the same strict adherence to the gluten free diet. One of the spinoff diseases that celiac disease and NCGS share is neurological damage/ataxia.

Okay I can't figure out a way to post a picture. But this is what my test result was...

Transglutaminase IgA

Your Value<

1 U/mL

Standard Range

<15 U/mL

Negative

Gliadin Deamidated IgA

Your Value

<1 U/mL

Standard Range

<15 U/mL

Negative

[trents]

NCGS doesn't damage the small bowel villi as does celiac disease and that is why there is no test for NCGS yet. But with NCGS gluten can be toxic to other body systems.

To post a picture use the three dots in the upper right corner of a new post window. But you only have a short time window to do it. After that window is closed you would need to start a new post in order to post a pic. This time window feature helps defeat spammers.

[StephNich12]

23 minutes ago, trents said:

NCGS doesn't damage the small bowel villi as does celiac disease and that is why there is no test for NCGS yet. But with NCGS gluten can be toxic to other body systems.

To post a picture use the three dots in the upper right corner of a new post window. But you only have a short time window to do it. After that window is closed you would need to start a new post in order to post a pic. This time window feature helps defeat spammers.

Okay. Did you see my reply where I copied and pasted my test results?

[trents]

11 minutes ago, StephNich12 said:

Okay. Did you see my reply where I copied and pasted my test results?

Yes I did. But I don't have any confidence in the results because you were only back on gluten for two weeks. The gluten challenge before an endoscopy/biopsy is shorter. That is actually 2 weeks.

It's too bad your doctor didn't order a more complete antibody panel with total IGA and DGP tests. One of those might have picked something up.

Edited February 4, 2023 by trents

[trents]

The yellow poop can be caused by other food intolerances/sensitivities apart from gluten. Milk, soy, eggs, corn, oats (even gluten-free oats) are known to be common additional intolerances for those with gluten disorders. Then there is MCAS (Mast Cell Activation Syndrome) and histamine intolerance which can cause GI irregularities.

Edited February 4, 2023 by trents

[April42]

Hi there! Do you get a lot of headaches or weird skin rashes or acne? There’s a type of celiac that doesn’t attack the digestive system as bad as it does skin & causes neurological issues & inflammation throughout body. My tests weren’t super clear either. Not sure if from where I I have latent celiac or from where my appetite was so small prior to testing that I was no where near the  2 slices of bread required for testing accurately. I think this is why many Celiacs go undiagnosed:(  Good luck!! 

[StephNich12]

7 hours ago, April42 said:

Hi there! Do you get a lot of headaches or weird skin rashes or acne? There’s a type of celiac that doesn’t attack the digestive system as bad as it does skin & causes neurological issues & inflammation throughout body. My tests weren’t super clear either. Not sure if from where I I have latent celiac or from where my appetite was so small prior to testing that I was no where near the  2 slices of bread required for testing accurately. I think this is why many Celiacs go undiagnosed:(  Good luck!! 

Yes, I get migraines. I've always gotten them once a month, but I started getting several a week for the last six months. I also started getting a weird rash and time of acne on my face.

[trents]

2 hours ago, StephNich12 said:

Yes, I get migraines. I've always gotten them once a month, but I started getting several a week for the last six months. I also started getting a weird rash and time of acne on my face.

To camp on what April42 said, There is a manifestation of celieac disease that a minority of celiacs get which produces an epidermal reaction to gluten called dermatitis herpetiformis (or "DH"). Celaic disease is the only known cause for it so if a person has it they have celiac disease. A certain percentage of those with DH do not get gut involvement in their celiac disease. DH has a characteristic appearance with little blisters on the pimples. You might google pictures of it to see if it looks like what you have. DH can be biopsied but it must be done during an active flareup and the samples should be take from tissue next to a pimple and not on one. Not every dermatologist is familiar with this.

Migraines are a very common symptom of celiac disease. I get them and sometimes several times weekly.

Edited February 4, 2023 by trents

[Wheatwacked]

 

21 hours ago, StephNich12 said:

Should I push for more tests?

 

here is no more advantage to eating gluten for you, regardless of reason. It is a toxin. There are actually over 200 symptoms associated.  If just one makes you feel better isn't it worth it? Whatever the test results if you continue to eat gluten you will be sick.. I believe you are already convinced. Just do it.  

Try adding lots of choline to your diet, food or pill form. It is essential in gall bladder and liver sypmtoms. Gall bladder surgery is one of the most popular. Less than 10% US population eat enough and combined with malabsorbtion you are in a high risk group.  The other symptoms you describe could also be attributed to deficiency in Thiamine, iodine, B5, B12, Choline. Vitamin D defficiency is ubiquitous.

Enjoy the ride.

 

[April42]

On 2/4/2023 at 7:45 AM, StephNich12 said:

Yes, I get migraines. I've always gotten them once a month, but I started getting several a week for the last six months. I also started getting a weird rash and time of acne on my face.

Oh bless your heart! My last one was so painful that if I had better insurance & wasn’t covered up with hospital bills from trying to find what’s wrong with me ..then I would’ve went to the ER! It was a 3 day one after I risked it at KFC:( The acne is horrible, takes forever to heal..months. Hope yours gets better. I’m about to try neem’s oil! 

[April42]

On 2/4/2023 at 10:02 AM, trents said:

To camp on what April42 said, There is a manifestation of celieac disease that a minority of celiacs get which produces an epidermal reaction to gluten called dermatitis herpetiformis (or "DH"). Celaic disease is the only known cause for it so if a person has it they have celiac disease. A certain percentage of those with DH do not get gut involvement in their celiac disease. DH has a characteristic appearance with little blisters on the pimples. You might google pictures of it to see if it looks like what you have. DH can be biopsied but it must be done during an active flareup and the samples should be take from tissue next to a pimple and not on one. Not every dermatologist is familiar with this.

Migraines are a very common symptom of celiac disease. I get them and sometimes several times weekly.

Hey there , I think you’ve given me advice before. Do you mind to take a look at these & see what you think? I posted a new topic because we are still battling here. But no responses yet , probably because I may not have it posted in right place. Thanks for the help. These are from my daughter’s face & mine:( It’s so upsetting! 

[trents]

Using the forum's search engine tool, choose "everywhere" and type in "dermatitis herpetiformis". I do not manifest the rash so I'm not particularly familiar with what it looks like. But that search should term up some pictures for you. Also google it on the internet.

[April42]

7 minutes ago, trents said:

Using the forum's search engine tool, choose "everywhere" and type in "dermatitis herpetiformis". I do not manifest the rash so I'm not particularly familiar with what it looks like. But that search should term up some pictures for you. Also google it on the internet.

Oh it looks identical to the dh rash pics online. It burns, itches & very slow healing. My face has recently looked like I’ve been in fight from where it’s flared up so bad & I’ve barely touched it! I was just hoping for someone who’s seen the rash personally before to give the reassurance. 

[trents]

1 hour ago, April42 said:

Oh bless your heart! My last one was so painful that if I had better insurance & wasn’t covered up with hospital bills from trying to find what’s wrong with me ..then I would’ve went to the ER! It was a 3 day one after I risked it at KFC:( The acne is horrible, takes forever to heal..months. Hope yours gets better. I’m about to try neem’s oil! 

Is there anything at KFC that comes close to being gluten free?