One Positive Biopsy, Two Negative And Two Negative Blood Tests

[Kar1972]

As the subject reads, I had one positive biopsy around 1999 for "celiac sprue", and in 2008 and 2012 I got negative blood test results and biopsies. I may not have eaten enough gluten before the 2012 biopsy, though, to get a positive result.

I think my reactions are delayed by a couple of days, first starting with a day of depression and the next day, loose stool which can go on for days. (I never specifically counted days).

I also get a high eosinophil count that my doctor thinks is because of an unknown food allergy.

Prednisone (as a shot) helped the one time that I tried it, recently.

Would you believe the 1999 biopsy that was positive for celiac disease, given this information?

Thanks!

[Bubba's Mom]

As the subject reads, I had one positive biopsy around 1999 for "celiac sprue", and in 2008 and 2012 I got negative blood test results and biopsies. I may not have eaten enough gluten before the 2012 biopsy, though, to get a positive result.

I think my reactions are delayed by a couple of days, first starting with a day of depression and the next day, loose stool which can go on for days. (I never specifically counted days).

I also get a high eosinophil count that my doctor thinks is because of an unknown food allergy.

Prednisone (as a shot) helped the one time that I tried it, recently.

Would you believe the 1999 biopsy that was positive for celiac disease, given this information?

Thanks!

When you tested positive for Celiac did you go gluten-free? If so, blood tests will be negative and biopsies too. You must be consuming a good amount of gluten daily for the anibodies and intestinal damage to show up.

[Kar1972]

Not at first. I wasn't gluten-free in 2008 because, long story short, I wasn't told about my positive biopsy from 1999 and only found out much later that I had it. In 2012 I had been gluten-free for 6 wonderful months but then had tried for a month to have regular doses of gluten for my upcoming endoscopy and colonoscopy. And maybe a month wasn't enough. I had scheduled the scopes because I had, prior to them, about six weeks of terrible flare ups--I even needed Gatorade regularly to feel better. I don't know what caused the flare up, but a blood test showed a very high eosinophil count. I had been gluten-free at the time as well as I could tell.

Thanks.

[Bubba's Mom]

Not at first. I wasn't gluten-free in 1999 because, long story short, I wasn't told about my positive biopsy from 1999 and only found out much later that I had it. In 2012 I had been gluten-free for 6 wonderful months but then had tried for a month to have regular doses of gluten for my upcoming endoscopy and colonoscopy. And maybe a month wasn't enough. I had scheduled the scopes because I had, prior to them, about six weeks of terrible flare ups--I even needed Gatorade regularly to feel better. I don't know what caused the flare up, but a blood test showed a very high eosinophil count. I had been gluten-free at the time as well as I could tell.

Thanks.

Eosinophils are a sign of inflamation. You may have gotten a bug that inflamed your system, or ate something that triggered a more inflamatory response to the gluten, causing an increase in symptoms?

For some people the month long challenge wouldn't be enough to show intestinal damage or it could be spotty and not seen.

You may have always had a negative blood test? Around 20-30% of us do, but have Celiac.

My suggestion would be to contact the Dr. that did your first biopsy in 1999 and request a report of the procedure and findings. You are entitled to your test results. In fact, I recommend keeping a file of your own with copies of test results. Dr.s are only required to keep records for a certain amount of time and you wouldn't want your history to be lost.

If you tested positive back then I'm surprised they didn't tell you to be gluten-free, but unfortunately some Dr.s aren't very well informed.

If it were me, I'd err on the side of caution and be gluten-free until you have a different explanation for your symptoms. Continuing to eat gluten if you are celiac is dangerous.

[Kar1972]

I have copies of those records, which is how I found the reports on the positive biopsy many years later.

I've run out of avenues for other diagnoses though. The allergy tests don't work on me because of a medication I take. The only other diagnoses I've been given were ulcerative colitis and IBS on separate occasions. The UC diagnosis is from the same scopes done that revealed celiac in 1999. It's written on the same lab report, anyway, because they found a healed ulcer.

I'm so confused.

[kittty]

Are eosinophils the kind of white blood cells that can be high because of gluten damage to the intestines?

My blood test came back negative for celiac (because I was already gluten free for several months), but my white blood cell count was still really high. I figured it was because the damage was still healing.

[tom]

...

Would you believe the 1999 biopsy that was positive for celiac disease, given this information?

... I had been gluten-free for 6 wonderful months

I think 6 wonderful months combined w/ the older positive biopsy should mean a lot. There are a lot of ways the 2008 biopsy could be a false negative. A few months ago, it was a little shocking to see some national GI group's survey say that 38% of our biopsies don't get enough samples. Their cutoff was 4.

Another incredibly said many got no biopsy at all during their endoscopy. I hope *those* days are behind us.

Researchers found that only 43% of 13,000 patients who underwent endoscopy for celiac disease had a biopsy taken during the operation.

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[GottaSki]

I believe your dietary response confirms the 1999 positive biopsy. The wonderful 6 months gluten free FAR outweighs the negative biopsy in 2008.

I am curious:

Was there a report from the 1999 endoscopy or simply a reference to a positive celiac biopsy?

Did your 1999 medical history reference any celiac blood work?

Was the negative blood work in 2008 a single antibody test or the Full Celiac Blood Panel?

Same for 2012 - single antibody test or full panel?

Welcome - hope you continue to improve gluten-free!

[Kar1972]

There was a doctor's report in 1999 that ignored the report of lab findings which listed celiac sprue villous atrophy, and, I believe, ulcerative colitis/healed ulcer. I don't know why the doctor report mentions neither. In fact, this doctor shut his door and advised me to go to a prayer group for healing. I'm all for prayer, but...???? 1999 also--no bloodwork that I recall except that which found high eosinophils.

2008 -- found nothing and diagnosed with IBS. Celiac test done but I don't know if it was a full panel. Negative.

2012 -- celiac panel done, negative. Endoscopy negative. Colonoscopy showed nothing. Frustrating, but maybe I didn't do enough of a gluten challenge first.

[1974girl]

Can I ask what they are doing for your eosinophils? My df has them in her eosphagus. Her celiac is under control but not those. She has no symptoms and usually food will get stuck. We are already avoiding gluten, peas, beans, apples, pork, mustard , and tree nuts. It was not enough. Biopsy last week wasn't good. We don't know if we should further restrict her diet without symptoms. I also need to consider her mental state as well as physical and being 12 with celiac is hard enough without EE. What did they tell you to do?

[Kar1972]

Can I ask what they are doing for your eosinophils? My df has them in her eosphagus. Her celiac is under control but not those. She has no symptoms and usually food will get stuck. We are already avoiding gluten, peas, beans, apples, pork, mustard , and tree nuts. It was not enough. Biopsy last week wasn't good. We don't know if we should further restrict her diet without symptoms. I also need to consider her mental state as well as physical and being 12 with celiac is hard enough without EE. What did they tell you to do?

Nothing, unfortunately. But I have a prednisone pack ready in my drawer for when the D gets bad.

[GottaSki]

There was a doctor's report in 1999 that ignored the report of lab findings which listed celiac sprue villus atrophy, and, I believe, ulcerative colitis/healed ulcer. I don't know why the doctor report mentions neither. In fact, this doctor shut his door and advised me to go to a prayer group for healing. I'm all for prayer, but...???? 1999 also--no bloodwork that I recall except that which found high eosinophils.

2008 -- found nothing and diagnosed with IBS. Celiac test done but I don't know if it was a full panel. Negative.

2012 -- celiac panel done, negative. Endoscopy negative. Colonoscopy showed nothing. Frustrating, but maybe I didn't do enough of a gluten challenge first.

Thanks for answering...no wonder you have doubt. You should have been diagnosed in 1999. I still think your six months gluten-free confirms the 1999 Dx. What does your doctor make of the 1999 lab report? If there is doubt regarding the diagnosis how does the doctor explain your dietary response -- perhaps Non-Celiac Gluten Intolerance -- same end game -- remove all gluten.

If you remain in doubt you could do a longer gluten challenge, but with negative blood work in 2008 you may still come up negative. If you do go that route make sure your doctor is running the full panel (I was only a slight tTG IgA positive at 43, but my IgG results were much higher and I was deficient in all nutrients - we all test different):

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

I think you mentioned low D - vitamin K is also a good indicator in Celaic. Below are the nutrients I have done along with my celiac panel annually:

Bs, D, K, Iron, Ferritin, Copper and Zinc

Good luck to you

[Kar1972]

The 1999 doctor said "Eosinophilic gastroenteritis" because they also found patches of eosinophils all over inside. The 2008 doctor said, "Well, other things can cause villous atrophy" and said IBS. After I was called with the results of the 2012 scopes, frankly, I didn't even bother to follow up with the doctor, I was so frustrated.

Vitamin K deficiency is also an indicator as well as D? Thanks for the information. I have deficiencies in both. I have little red pin prick-looking spots all over my upper arms which I read are from lack of K. In 1999 I got an Rx for the K so I wouldn't bleed to death from the biopsies, but it appears an Rx is no longer necessary because Amazon sells two kinds of K now. I am reminded to buy some! I have also been found to be deficient in magnesium based on symptoms (excruciating burning skin on legs after a day on my bike). I don't know about calcium but I'm scared to supplement it because of a recent finding that supplementation can cause calcification of the blood vessels (my uncle, a doctor with WHO, read the study and told my aunt to throw out her calcium). I don't want the problems of the women before me e.g. osteoporosis, so I'm going to try getting lots of calcium-rich foods that are non-dairy (I hear it's being questioned whether we actually absorb the calcium in dairy).

I want to get the family on the paleo diet with me, with the periodic splurge for them like pasta or whatever; it's just easier if we all mostly eat the same dinners. One thing I consider too overwhelming at this point is re-learning how to cook with gluten and flour substitutes--to me it sounds expensive and a hassle I'm not up to. I'd rather just eat paleo, nice and simple. I like vegetables and fruit and meat, no problem. I'll make meals like stir frying yellow squash with red sweet pepper and peas in peanut oil with sea salt and pepper. Doesn't take much to make me happy. I don't need cookies and cupcakes.

Thanks for the opinions so far.

[Kar1972]

The little pin prick-looking red dots are tiny hemorrhages, btw--which scares me. Could I be hemorrhaging all over inside my body--and brain?

[Kar1972]

Are eosinophils the kind of white blood cells that can be high because of gluten damage to the intestines?

My blood test came back negative for celiac (because I was already gluten free for several months), but my white blood cell count was still really high. I figured it was because the damage was still healing.

Not ignoring you, I just don't know if it's true in all cases--but I have read that high eosinophils can occur with Celiac disease. I think they're more of an invader-fighting WBC than one that just hangs around where there's damage, though. In my experience, a white blood cell count is always done separately from the more specific eosinophil count, though. A high WBC count doesn't tell me your eosinophils are high, though that may be the case.

[eatmeat4good]

I wouldn't want to gluten challenge if gluten makes you feel awful. Just believe the 1999 biopsy. A positive is a positive no matter what year it was done. The travesty is that you were not told you were positive. Many people do a gluten challenge because they want a positive test, but you have one. And you have the 6 months off of gluten where you felt good. These two mean more than the negative tests. In my opinion.

[Kar1972]

I wouldn't want to gluten challenge if gluten makes you feel awful. Just believe the 1999 biopsy. A positive is a positive no matter what year it was done. The travesty is that you were not told you were positive. Many people do a gluten challenge because they want a positive test, but you have one. And you have the 6 months off of gluten where you felt good. These two mean more than the negative tests. In my opinion.

Thanks for your insight.

[Findin my way]

The little pin prick-looking red dots are tiny hemorrhages, btw--which scares me. Could I be hemorrhaging all over inside my body--and brain?

By tiny hemorrhages, do you mean petechiae? If it's petechiae you need to get your platelets checked. You might have another (non genetic) autoimmune disease called ITP. ITP would mean you have low platelets, which clot the blood. The spleen sends out antibodies that attack your platelets, destroying them. I had a chronic form of this disease as a teenager. I finally had my spleen removed to fix the problem. There has never been medical research, but some statistical research was done in the 90's that found a correlation to ITP and Celiac.

[Kar1972]

Wow, thank you for putting a name to it! I'll be seeing a dermatologist.

[Findin my way]

Wow, thank you for putting a name to it! I'll be seeing a dermatologist.

ITP has nothing to do with dermatology. It is a blood disorder. You need to be followed by a hematologist or internist. That's, of course, assuming you have ITP and low platelets. Good luck.

[Kar1972]

ITP has nothing to do with dermatology. It is a blood disorder. You need to be followed by a hematologist or internist. That's, of course, assuming you have ITP and low platelets. Good luck.

I know, I just read that a derm is most likely to dx it somewhere. Thanks.

[GFinDC]

There is skin condition associated with celiac called dermatitis herpetiformis. There is a section of the forum for it and you can find more info there and even pictures. Just in case that's what you have. People with DH sometimes have fewer GI symptoms at first for some reason.

Positive tests aren't wrong usually. It's the negatives tests that are more likely to be wrong. Positives are almost always correct.

[Kar1972]

There is skin condition associated with celiac called dermatitis herpetiformis. There is a section of the forum for it and you can find more info there and even pictures. Just in case that's what you have. People with DH sometimes have fewer GI symptoms at first for some reason.

That's definitely not it, but thanks!

[IrishHeart]

As the subject reads, I had one positive biopsy around 1999 for "celiac sprue", and in 2008 and 2012 I got negative blood test results and biopsies. I may not have eaten enough gluten before the 2012 biopsy, though, to get a positive result.

Would you believe the 1999 biopsy that was positive for celiac disease, given this information?

Thanks!

Yes, of course I would believe a biopsy that was positive for celiac. That's how it is usually diagnosed. Biopsies are not falsely negative. (that I know of)

I am confused....why are you eating gluten 13 years after your diagnosis??

**Edited by IH: kindly disregard! I missed the explanation why.

My sincere apologies, IH

[Darn210]

I am confused....why are you eating gluten 13 years after your diagnosis??

Because she didn't know she had a positive biopsy and she was not given a celiac diagnosis:

Not at first. I wasn't gluten-free in 2008 because, long story short, I wasn't told about my positive biopsy from 1999 and only found out much later that I had it. In 2012 I had been gluten-free for 6 wonderful months but then had tried for a month to have regular doses of gluten for my upcoming endoscopy and colonoscopy. And maybe a month wasn't enough. I had scheduled the scopes because I had, prior to them, about six weeks of terrible flare ups--I even needed Gatorade regularly to feel better. I don't know what caused the flare up, but a blood test showed a very high eosinophil count. I had been gluten-free at the time as well as I could tell.

Thanks.