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Antibody testing positive? Biospies negative?

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I am a 25 year old male and In March 2020, I started to become sick and I had 1-2 weeks of constant diarrhea and my abdomen was uneasy as well as nausea and dry heaving. I weighed 225 lbs at the time in a march. Now I weigh 200 pounds and there is not a cardio reason for it. I lost 20 pounds in about 3-4 mounts without trying and my weight is still slowing decreasing.

My symptoms included diarrhea, stomach uneasiness, and nausea. My stools turned a pale color and there has been off and on stringy mucus in my stools. The diarrhea cleared up but my pale stools remain as well constant uneasiness in my abdomen and off and on nausea. I am fatigued and have experienced brain fog. I always have a nauseous feeling at the back of my throat.

  In April, I went through multiple blood and stool tests and everything was normal except my liver function blood tests were elevated . My bilirubin (T bili) has been between 1.6 and 1.8 mg/dl for the last 7 months as well as Alt has been high for the same amount of time around 50 U/L. I received CT scan on my abdomen and pelvis and an ultrasound and found no issues. Both my parents have normal liver function numbers. I was checked for heptitis B and c as well as Wilson’s disease. I did a test for gastroparesis which was negative. 

At the end of May I received my first endoscopy. My GI doctor was not sure if celiac was a possibility but he was going to take a biopsy to check. The biopsy was negative and they found irritation in my esophagus and duodenum. We then proceeded to do a colonoscopy to make sure everything was okay and there was patchy redness in my sigmoid colon but the biopsy was negative and it was minimal inflammation so he thought the prep for the colonoscopy could have caused that. I did a Prometheus SGI blood test to look for UC and Crohns and it was negative. We also did a small bowl follow through x ray with barium to look at my small bowl but everything was normal. He thought maybe I had reflux and maybe IBS but wasn’t sure.

I went to get a second opinion and my gI recommended the Prometheus celiac plus blood test to look for celiac. These were my results.

  • IgG (DGP IgG)- my result was 21.1 CU ( reference range was less than 20.0 CU)
  • IgA (DGP IgA)- my result was less than 5.2 CU ( reference range was less than 20.0 CU)
  • IgA (TTG IgA)- my result was 27.0 CU ( reference range was less than 20.0 CU)
  • EMA IGA- positive 
  • Genotype- DQ8 heterozygous moderate risk.

I was told to go on a gluten free diet and he wanted to do another endoscopy and take more biopsies because he thought the first endoscopy could have missed it because they only took one biopsy. The diet did not help and it gave me more stomaches than before. I was eating gluten-free bread and other gluten-free made foods that seem like they gave me stomaches.

I was on a gluten-free diet for 3 weeks before the endoscopy. I asked if that would matter and he said if I wasn’t off gluten for months it would not make a difference. The diet did not help and it gave me more stomach aches than before. 

 The upper endoscopy showed a small sliding hiatal hernia and irritation in my stomach and irritation and segmental erosiveness in the first part of my duodenum. The biopsies turned out to be negative for celiac disease and H Pylori. 

So now I am in the situation where the first endoscopy was negative for celiac disease in may. They took one biopsy for it. I was on a normal diet for this endoscopy. The second endoscopy they took 8-10 biopsies and I was on a gluten-free diet and the biospies were normal and no celiac was there but the blood test for antibodies is showing otherwise. I still don’t feel well. And feel nauseated and my abdomen is uncomfortable? I’m not sure if that’s from the other things found in the endoscopy they found or something else.

Any thoughts if anyone thinks I have celiac even though the biopsies were negative twice? I would appreciate any input. 

 

 

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Welcome to the forum! To me it seems like, at the very least, you have gluten sensitivity, even if it might be technically classified as "non-celiac gluten sensitivity." Your blood test results and genetic test support this, and may even support you having celiac disease, although that's not been confirmed yet with a biopsy.

You have classic celiac disease symptoms, which go away when you are on a gluten-free diet.

Certainly you should follow your doctor's advice and finish up testing, but if the biopsy results are negative they may simply say that you don't have celiac disease, and can keep eating gluten if you want to. I would not advise this, as it clearly causes you serious discomfort, and is negative for your health.

To me it seems like a gluten-free diet is the path you are on, and you've already figured this out.

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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1 hour ago, Scott Adams said:

Welcome to the forum! To me it seems like, at the very least, you have gluten sensitivity, even if it might be technically classified as "non-celiac gluten sensitivity." Your blood test results and genetic test support this, and may even support you having celiac disease, although that's not been confirmed yet with a biopsy.

You have classic celiac disease symptoms, which go away when you are on a gluten-free diet.

Certainly you should follow your doctor's advice and finish up testing, but if the biopsy results are negative they may simply say that you don't have celiac disease, and can keep eating gluten if you want to. I would not advise this, as it clearly causes you serious discomfort, and is negative for your health.

To me it seems like a gluten-free diet is the path you are on, and you've already figured this out.

Thank you for the response Scott! It is odd because in May 2020 during my first endoscopy when I was on a regular gluten diet the one biospy they did for Celiac was negative.

Then the blood test they did last month when I was eating gluten was positive for some of the antibodies. I then went on a gluten free diet for 3 weeks after the positive blood test and my GI doctor redid the endoscopy and they took 8-10 biospies because they thought the first endoscopy might not have taken enough biospies to show Celiac and all those biospies were negative. My doctor said it was okay that I was off gluten for three weeks before the second endoscopy. He said if I was not off for months it would not make a difference. I have been off gluten for about a month now and do not feel any better then when I was on gluten. Until last week, I was eating my meals with gluten-free bread to maintain my weight and I have tried different kinds and brands and they have all given me bad stomaches that were worse than when I was eating a regular gluten diet. I am confused why my blood test was positive but biospies were negative and I feel no better on the gluten-free diet and it has been a month.

They found gastropathy in my entire stomach during the endoscopy and segmental erosions muscousa on my duodenum and a small hiatal hernia so I am not sure if that is why I feel nauseous?

What do you think of this or suggest I do?

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4 hours ago, Bearshockey01 said:

I am a 25 year old male and In March 2020, I started to become sick and I had 1-2 weeks of constant diarrhea and my abdomen was uneasy as well as nausea and dry heaving. I weighed 225 lbs at the time in a march. Now I weigh 200 pounds and there is not a cardio reason for it. I lost 20 pounds in about 3-4 mounts without trying and my weight is still slowing decreasing.

My symptoms included diarrhea, stomach uneasiness, and nausea. My stools turned a pale color and there has been off and on stringy mucus in my stools. The diarrhea cleared up but my pale stools remain as well constant uneasiness in my abdomen and off and on nausea. I am fatigued and have experienced brain fog. I always have a nauseous feeling at the back of my throat.

  In April, I went through multiple blood and stool tests and everything was normal except my liver function blood tests were elevated . My bilirubin (T bili) has been between 1.6 and 1.8 mg/dl for the last 7 months as well as Alt has been high for the same amount of time around 50 U/L. I received CT scan on my abdomen and pelvis and an ultrasound and found no issues. Both my parents have normal liver function numbers. I was checked for heptitis B and c as well as Wilson’s disease. I did a test for gastroparesis which was negative. 

At the end of May I received my first endoscopy. My GI doctor was not sure if celiac was a possibility but he was going to take a biopsy to check. The biopsy was negative and they found irritation in my esophagus and duodenum. We then proceeded to do a colonoscopy to make sure everything was okay and there was patchy redness in my sigmoid colon but the biopsy was negative and it was minimal inflammation so he thought the prep for the colonoscopy could have caused that. I did a Prometheus SGI blood test to look for UC and Crohns and it was negative. We also did a small bowl follow through x ray with barium to look at my small bowl but everything was normal. He thought maybe I had reflux and maybe IBS but wasn’t sure.

I went to get a second opinion and my gI recommended the Prometheus celiac plus blood test to look for celiac. These were my results.

  • IgG (DGP IgG)- my result was 21.1 CU ( reference range was less than 20.0 CU)
  • IgA (DGP IgA)- my result was less than 5.2 CU ( reference range was less than 20.0 CU)
  • IgA (TTG IgA)- my result was 27.0 CU ( reference range was less than 20.0 CU)
  • EMA IGA- positive 
  • Genotype- DQ8 heterozygous moderate risk.

I was told to go on a gluten free diet and he wanted to do another endoscopy and take more biopsies because he thought the first endoscopy could have missed it because they only took one biopsy. The diet did not help and it gave me more stomaches than before. I was eating gluten-free bread and other gluten-free made foods that seem like they gave me stomaches.

I was on a gluten-free diet for 3 weeks before the endoscopy. I asked if that would matter and he said if I wasn’t off gluten for months it would not make a difference. The diet did not help and it gave me more stomach aches than before. 

 The upper endoscopy showed a small sliding hiatal hernia and irritation in my stomach and irritation and segmental erosiveness in the first part of my duodenum. The biopsies turned out to be negative for celiac disease and H Pylori. 

So now I am in the situation where the first endoscopy was negative for celiac disease in may. They took one biopsy for it. I was on a normal diet for this endoscopy. The second endoscopy they took 8-10 biopsies and I was on a gluten-free diet and the biospies were normal and no celiac was there but the blood test for antibodies is showing otherwise. I still don’t feel well. And feel nauseated and my abdomen is uncomfortable? I’m not sure if that’s from the other things found in the endoscopy they found or something else.

Any thoughts if anyone thinks I have celiac even though the biopsies were negative twice? I would appreciate any input. 

 

 

This is tough advice but I had to eliminate all grains and puesdo grains. I also found I reacted to insecticides so try to eat organic( check out dirty dozen and clean fifteen) I did this for 2 years and can now eat the gluten free products and grains, still react to pesticides. Good luck and blessings to you

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My doctor said it was okay that I was off gluten for three weeks before the second endoscopy. 

I believe that this is not correct. All protocols I have seen indicate that you MUST be eating gluten daily for at least 2 weeks before the endoscopy for celiac disease is done. This could explain why your results were negative.

Many people with celiac disease or gluten sensitivity do have additional food intolerance issues, some of which may be temporary. In my case I could not eat chicken eggs, corn, cow's milk (casein) or tomatoes for 1-2 years after I went gluten-free. I was able to add those back after my gut healed. Every person's case is different, but just be aware that gluten may not be the only issue.

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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31 minutes ago, Scott Adams said:

I believe that this is not correct. All protocols I have seen indicate that you MUST be eating gluten daily for at least 2 weeks before the endoscopy for celiac disease is done. This could explain why your results were negative.

Many people with celiac disease or gluten sensitivity do have additional food intolerance issues, some of which may be temporary. In my case I could not eat chicken eggs, corn, cow's milk (casein) or tomatoes for 1-2 years after I went gluten-free. I was able to add those back after my gut healed. Every person's case is different, but just be aware that gluten may not be the only issue.

Hey Scott, I was on a regular diet with gluten before my first endoscopy in May 2020. They only took one biopsy for celiac but it was negative. I did the blood test I attached above in September and I had antibodies.

We did redo the endoscopy where 8-10 biopsies were taken but the biopsies were negative again. Like I said I was on a gluten free diet for three weeks before the second endoscopy. 

Do you think it’s possible the first endoscopy missed it because the doctor only took one biopsy and the second endoscopy where they took 8-10 biopsies was negative because I was on a gluten free diet?
 

It’s odd because I have some of the symptoms of celiac and the blood test was positive but the two endoscopy’s were negative. I still don’t feel better on a gluten free diet and it’s been a month. I’m kind of lost right now because the blood test was positive and the endoscopies were negative and I don’t feel better on a gluten free diet and it’s been a month. I feel the same as when I was eating gluten and when I eat gluten free bread I get really bad stomaches. 

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3 minutes ago, Scott Adams said:

They should be taking at least 4 specimens when doing a biopsy:

 So the scenarios you've presented are indeed possible.

Thanks Scott. I appreciate your help. My doctor said we could repeat the celiac blood test if I wanted to. His assessment was either the biospy missed celiac but he thought that was unlikely because they took about 10 biospies or I am at a high risk of developing the disease. 

I have been off gluten since 10/1/2020. Would you recommend I repeat the blood test and the endoscopy in a month and going back on gluten? If so, how long would I need to go back on a gluten diet for the antibody test to be accurate and the biospies to be there? The problem right now is there is just not enough proof other than my symtoms that I have Celiac.

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For a gluten challenge I believe they recommend at least 6 weeks of eating ~1 slice worth of wheat bread a day before the blood tests. Certainly doing this would be a good idea if you would not otherwise be able to maintain a gluten-free diet for life, or if you had any doubts about whether or not you should be gluten-free.

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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50 minutes ago, Scott Adams said:

For a gluten challenge I believe they recommend at least 6 weeks of eating ~1 slice worth of wheat bread a day before the blood tests. Certainly doing this would be a good idea if you would not otherwise be able to maintain a gluten-free diet for life, or if you had any doubts about whether or not you should be gluten-free.

What would you recommend me doing if you were in my situation?
 

My blood test antibodies was positive but both my endoscopy biopsies were negative and I have felt no better on the gluten free diet verses my regular diet over the last month. The first endoscopy they took one biopsy and the second one they took multiple biopsies 

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I would follow your doctor's advice and repeat the blood test after 6 weeks of eating gluten. If the results are positive I would consider myself, at the very least, gluten sensitive, and go on a gluten-free diet. Due to your unusual circumstances your doctor may ask you to do another biopsy if you have positive blood tests. It's your call whether you would want to do that. It would decide whether or not you have celiac disease, but my not settle the issue of you being gluten sensitive. Officially it's call non-celiac gluten sensitivity, and it is thought that it could turn into full blown celiac disease at some point, should you keep eating gluten.

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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I had a very high TTg score, 37, then 41, negative biopsy, but they didn’t make me re-do it, instead they did a genetic test to see if I carried the gene, that was positive and once I had been gluten free for about 5-6 months my symptoms went away, and my TTg score went back down below the acceptable levels (>10), so the specialist diagnosed me regardless. A few months after diagnosis and about 6 months after going extremely strictly gluten free, I had one incident with a glass of water that likely had some beer in it, I was so sick, vomiting, migraine, so I went for a TTg test and it came back as 14, so I retested test every few months and after 5 months of gluten free again my score finally went back down below 10. Hope this helps you a bit!

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