Biopsy says no celiac disease, doctor says yes

[Steve76]

Hi everyone,

I have had bowel trouble for about 12 years. It first started with a case of acute diarrhea during jogging. After that the main complaints are bloating and flatulence/burping. It is worse after meals. I had acute diarrhea on a few occasions after eating very buttery/oily food.

Twelve years ago my general doctor diagnosed it as IBS (after not founding anything specific). Recently I have revisited the problem in the hope to solve it as it is something I can live with but it still affects your life quite a bit. So I went to a gastro-enterologist.

First I had a breath test for lactose which was negative. Then I was checked for celiac disease:

As far as I know to diagnose celiac disease you do blood test which give you an indication. This then needs to be confirmed by an endoscopic biopsy.

My blood test came back with the following results:

• Deamidated Gliadin Antibody was positive (6.2 kU/L range 0-3.9)
• Transglutaminase (IgA) was negative (0.6 kUA/L range < 8.0)

I read that the transglutaminase test is more reliable, but we still did the endoscopic biopsy which came out negative. Then a week after telling me I do not have celiac disease because of the biopsy my gastro-enterologist emails me writing; "the lab antibody test for gluten is positive so your condition seems celiac disease".

Of course I was surprised as I thought the biopsy should have been the gold standard (and the antibody test was quite uncertain). I asked her, but unfortunately I did not get a reply anymore. So my first question is if I am correct in my conclusion that it is highly unlikely that I have celiac disease?

I do have the feeling I react to some products that contain gluten (croissant/pizza/cake/pasta/soy sauce), but others not (e.g. bread).I have tried going gluten free for a week, but there was no impact. I thought that the issue might be fat content as at least croissant/pizza/cake have a higher fat content than bread, so I tried a low fat diet for about a week, but also that did not improve my symptoms.

For completeness other deviating blood values are:

• Bilirubine indirect (1.48 mg/dL range 0-1.10) This is due to a biliary cyste.
• Cholestrol LDL (185 mg/dL range < 115)
• Ferritine (378 ug/L range 20-250)
• Vitamine D (11.2 ng/mL range 30-100)

So if my condition is not celiac disease all ideas and advise of what it could be are welcome.

Thank you all in advance,

Steve

[Nick Cheruka]

1 hour ago, Steve76 said:

Hi everyone,

I have had bowel trouble for about 12 years. It first started with a case of acute diarrhea during jogging. After that the main complaints are bloating and flatulence/burping. It is worse after meals. I had acute diarrhea on a few occasions after eating very buttery/oily food.

Twelve years ago my general doctor diagnosed it as IBS (after not founding anything specific). Recently I have revisited the problem in the hope to solve it as it is something I can live with but it still affects your life quite a bit. So I went to a gastro-enterologist.

First I had a breath test for lactose which was negative. Then I was checked for celiac disease:

As far as I know to diagnose celiac disease you do blood test which give you an indication. This then needs to be confirmed by an endoscopic biopsy.

My blood test came back with the following results:

• Deamidated Gliadin Antibody was positive (6.2 kU/L range 0-3.9)
• Transglutaminase (IgA) was negative (0.6 kUA/L range < 8.0)

I read that the transglutaminase test is more reliable, but we still did the endoscopic biopsy which came out negative. Then a week after telling me I do not have celiac disease because of the biopsy my gastro-enterologist emails me writing; "the lab antibody test for gluten is positive so your condition seems celiac disease".

Of course I was surprised as I thought the biopsy should have been the gold standard (and the antibody test was quite uncertain). I asked her, but unfortunately I did not get a reply anymore. So my first question is if I am correct in my conclusion that it is highly unlikely that I have celiac disease?

I do have the feeling I react to some products that contain gluten (croissant/pizza/cake/pasta/soy sauce), but others not (e.g. bread).I have tried going gluten free for a week, but there was no impact. I thought that the issue might be fat content as at least croissant/pizza/cake have a higher fat content than bread, so I tried a low fat diet for about a week, but also that did not improve my symptoms.

For completeness other deviating blood values are:

• Bilirubine indirect (1.48 mg/dL range 0-1.10) This is due to a biliary cyste.
• Cholestrol LDL (185 mg/dL range < 115)
• Ferritine (378 ug/L range 20-250)
• Vitamine D (11.2 ng/mL range 30-100)

So if my condition is not celiac disease all ideas and advise of what it could be are welcome.

Thank you all in advance,

Steve

Hi Steve, I got diagnosed per bloodwork and endoscopic biopsy over 20yrs ago! Your biopsy could have been taken where there was no villi damage but it could be damaged further down or not seen clearly to take the biopsy where your GI should have seen villi damage or flattening of your villi somewhere along the line, If the lab anti body tests are positive you more than likely have Celiacs and personally I would try another GI who specializes in Celiacs and get another biopsy done! Were you consuming Gluten prior to your biopsy? If you came of gluten prior to your biopsy it could be hard to find a spot that shows villi atrophy aka damage from the gluten protein! 2nd and even 3rd opinions can’t hurt when it comes to your health especially with Celiacs! Good Luck☘️I hope this helps! 

[trents]

Welcome to the forum, Steve!

May we ask your age?

First, the Deamidated Gliadin Antibody was weakly positive. But it still can indicate celiac disease. But in the absence of any damage to the small bowel villous lining from the biopsy, I'm like you. I don't have a lot of confidence in that as a diagnosis.

However, I don't think one week on a reduced gluten diet is much of a test. I wonder how thorough you were in avoiding gluten. Most people have no idea how ubiquitous gluten is in the food supply and just avoiding the obvious sources like bread and pasta is far from an approach that will ensure you aren't getting any gluten. It's in things you would never expect to find it like, soy sauce, almost all canned soups, some pancake syrup products, some chocolate syrup products, some ice creams, many chili and bean products. I could go on and on. And then there is the whole phenomenon of "CC" (cross contamination) which happens when gluten, though it's not an intentional ingredient, gets included in other foods during growing, transportation, storage, and processing . . . or cooking and handling in eateries. You can order what appears to be naturally gluten free food in a restaurant, even listed as gluten free on the menu and still get "glutened" because they cooked it in the same pot/pan/grill as they did stuff having wheat or they flipped it or handled it with the same spatula as they did gluten things. Here is a primer for a serious beginning to eating gluten free:

Having said all that, one reason tTG-IGA scores can be negative but second level non IGA tests can be positive is have a low total serum IGA. It's too bad that test wasn't run. You only had two serum tests run for celiac disease, the tTG-IGA and the Deamidated Gliadin Antibody (not sure if it was the DGP-IGG or the DGP-IGA since the information you provided isn't more specific). There are other tests that can be run to check for celiac disease that were not run.

But again, the biopsy is sort of a gold standard and it was negative, a glaring fact that suggests something else is causing your bowel issues. There are other medical problems that can cause an elevated Deadimated Gliadin antibody score. I would research that if I were you but I think Crohn's is one of them. I would also add that damage to the small bowel villi can be patchy and if during the biopsy a number of samples were not take form different areas of the duodenum and the duodenum bulb, it can be missed.

But the lab I really want to draw to your attention is the severely low vitamin D. You need to look into that and have a conversation with your physician about it. Vitamin D is proving to be a sort of master vitamin that is necessarily involved in many important biochemical processes. I suggest you look into supplementing with 5-10k IU of D3 daily.

And why is your ferritin so high? Ask your physician about hemochromatosis.

Edited August 19, 2023 by trents

[Nick Cheruka]

1 minute ago, Nick Cheruka said:

Hi Steve, I got diagnosed per bloodwork and endoscopic biopsy over 20yrs ago! Your biopsy could have been taken where there was no villi damage but it could be damaged further down or not seen clearly to take the biopsy where your GI should have seen villi damage or flattening of your villi somewhere along the line, If the lab anti body tests are positive you more than likely have Celiacs and personally I would try another GI who specializes in Celiacs and get another biopsy done! Were you consuming Gluten prior to your biopsy? If you came of gluten prior to your biopsy it could be hard to find a spot that shows villi atrophy aka damage from the gluten protein! 2nd and even 3rd opinions can’t hurt when it comes to your health especially with Celiacs! Good Luck☘️I hope this helps! 

Also I to have been diagnosed with IBS with the Celiacs and Barretts Esophagus as well all found thru 3-4 different GI doctors! It pays to see another GI especially one who specializes in Celiacs they all do not!

[Steve76]

Hi everyone,

Thank you for all your information already! I will try to answer your extra questions.

• I was not off gluten before my biopsy.
• My age is 47.
• It is true that my week off gluten was not that rigorous.
• The Deamidated Gliadin Antibody was IgA.
• After the tests I started taking Vitamin D supplements and the values are now in the normal range (41.4).
• About the hemochromatosis, my transferrin saturation was within bounds (42%, range 20-50%), so it is probably not that, but I will ask my doctor about that.
• I will look into other medical problems that can cause an elevated deadimated gliadin like Crohn’s.

My main conclusion after your answers is that I need to find a GI that is more of an expert.

Thanks again,

Steve

[Nick Cheruka]

33 minutes ago, Steve76 said:

Hi everyone,

Thank you for all your information already! I will try to answer your extra questions.

• I was not off gluten before my biopsy.
• My age is 47.
• It is true that my week off gluten was not that rigorous.
• The Deamidated Gliadin Antibody was IgA.
• After the tests I started taking Vitamin D supplements and the values are now in the normal range (41.4).
• About the hemochromatosis, my transferrin saturation was within bounds (42%, range 20-50%), so it is probably not that, but I will ask my doctor about that.
• I will look into other medical problems that can cause an elevated deadimated gliadin like Crohn’s.

My main conclusion after your answers is that I need to find a GI that is more of an expert.

Thanks again,

Steve

I think that will help and you can find more answers there! If it helps there are Celiac Doctor Groups that have come together to work together as more than one doctor to help Celiacs get answer's to a better way of life! It helped me tremendously! I was diagnosed at age 35 took 2-1/2yrs with Doctors back in 2003 to finally get a concrete diagnosis of Celiacs, I’m now 53 and doing well and thriving being totally gluten-free! Stay Strong💪

[trents]

2 hours ago, Steve76 said:

Hi everyone,

Thank you for all your information already! I will try to answer your extra questions.

• I was not off gluten before my biopsy.
• My age is 47.
• It is true that my week off gluten was not that rigorous.
• The Deamidated Gliadin Antibody was IgA.
• After the tests I started taking Vitamin D supplements and the values are now in the normal range (41.4).
• About the hemochromatosis, my transferrin saturation was within bounds (42%, range 20-50%), so it is probably not that, but I will ask my doctor about that.
• I will look into other medical problems that can cause an elevated deadimated gliadin like Crohn’s.

My main conclusion after your answers is that I need to find a GI that is more of an expert.

Thanks again,

Steve

Steve, glad to hear our vitamin D level is improving. Keep taking those D3 supplements as, although 41.4 may be within normal range, it is not optimal. Shoot for 80. Don't be afraid of overdosing on D3. D3 toxicity is much less of an issue than was once thought.

https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

 

[Wheatwacked]

Hi Steve76,

      You have been dealing with the stomach issue overtly for 12 years and I do not doubt when you heal you will realize symptoms you were told were normal part of growing up were caused by gluten.

     A major effect of Celiac Disease on our bodies is Celiac malabsorption syndrome and from the results you've posted, it has affected you.

     It can take months to years to heal the damage to your gut.   It is a two step process. Stop all gluten.  Fix nutrient deficiencies.

      The nutrient deficiencies respond quickly to the right level of intake to reverxe the deficiency and start to store the extra,  which in general is well above the listed RDA but also well below the Tolerable Safe Upper Limit in most cases.

     the biopsy is the gold standard in that if you have the damage they are looking for it is definitely Celiac Disease.  But if they don't find it, you are not definitely negative.  Originally Celiac was a children only gastric disease, mostly fatal.  Now we know that it affects other systems, like the skin DH for some without any other overt symptom.

     How long ago did this happen?  And was the vitamin D at the same lab, ie. ng/ml"  Some labs use nmol/L.   41.1 nmol/L equals only 16.6 ng/ml.  I started 10,000 IU in 2015.  Tested in 2019 at 47 ng/ml.  Reached and maintain since 80 ng/ml (which equals 200 nmol/L and am continuing at 10K iu (250 mcg) with doctors blessing.  So I ask. Double check the units.

• Bilirubine indirect (1.48 mg/dL range 0-1.10) This is due to a biliary cyste. 

Researchers believe that biliary cysts form when there is an abnormality at the intersection between the bile duct and pancreatic duct. Choline is considered a bile salt and it plays a pivotal role in the digestion of fats.  Choline is a fat emulsifier and reduces the surface tension in fat and bile. Choline enhances bile secretion and prevents bile acid-induced cholestasis (reduction or stoppage of bile flow).  Increasing choline intake may help diute your bile, helping it flow better.  Less than 10% of the populations of the developed world consume even the minimum amount of choline.

• Ferritine (378 ug/L range 20-250)

Could also be because of low choline, problem with B12 or B6 or all of them.  Ferritinis stored in your liver. Low choline intake causes Fatty Liver Disease.

Secondary hemochromatosis is a more diverse disease than primary. and is prevalent than primary iron overload and occurs as a consequence of various causes The main causes of secondary iron overload are iron-loading anemias, and chronic liver disease.  Look to your choline intake.

[Steve76]

Hi all,

thanks again for all the information. Vitamine D was indeed at the same lab (in ng/mL). I will definitely look into choline.

I also had one more question. When you have celiac disease, will you react also to other food? I definitely have inmediate reactions (bloating/flatulence/burping) to food that are a 100% glutenfree.

Thanks again,

Steve

[Nick Cheruka]

30 minutes ago, Steve76 said:

Hi all,

thanks again for all the information. Vitamine D was indeed at the same lab (in ng/mL). I will definitely look into choline.

I also had one more question. When you have celiac disease, will you react also to other food? I definitely have inmediate reactions (bloating/flatulence/burping) to food that are a 100% glutenfree.

Thanks again,

Steve

Hi Steve, Hopefully this helps! Celiac for 20+yrs! I have lactose intolerance with my celiacs disease so anything containing lactose I avoid! I have a problem with eggs as well and avoid those! I am also on a low fodmap diet for IBS and a low glycemic diet as well as the gluten free diet or aka lifestyle because I have had to eliminate more that just gluten from my system to get my heath in better shape! Good Luck on your journey to hopefully feeling better again! There is hope we have to be strict to the changes and no cheating if you want a better quality of life! I also avoid garlic in it’s normal state, I now infuse my garlic in olive oil and strain out the garlic cloves so I can use that without having the reaction normal garlic gloves or garlic powder have given me in the past! Good Luck☘️

[trents]

4 hours ago, Steve76 said:

Hi all,

thanks again for all the information. Vitamine D was indeed at the same lab (in ng/mL). I will definitely look into choline.

I also had one more question. When you have celiac disease, will you react also to other food? I definitely have inmediate reactions (bloating/flatulence/burping) to food that are a 100% glutenfree.

Thanks again,

Steve

It is extremely common for those with celiac disease to have one or more non-gluten food intolerances. Dairy, oats (even gluten free), and eggs. But it can be almost anything. This tendency to develop non-gluten food intolerances is likely due to the "leaky gut" syndrome that goes hand in hand with celiac disease. In addition to food intolerances there are also SIBO (Small Intestine Bacterial Overgrowth) and histamine intolerance/MCAS (Mas Cell Activation Syndrome) that are common in our celiac community. You might want to research these maladies. You also might want to have ALCAT food allergy testing done.