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Negative Biopsy And Blood Tests -- Could It Be Celiac Still?

tabdegner

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tabdegner Apprentice
tabdegner
Posted

I'm glad I found this forum. I'd like some input on what to ask my doctor before I go in again in April.

Here's a brief history. My mom and sister both have biopsy proven celiac. Mom also has type 1 diabetes and autoimmune thyroid disease. My son also has type 1 diabetes. I have autoimmune thyroid disease and extremetly high levels of antibodies for type 1 diabetes.

Okay, that said, I have been having tons of celiac symptoms for several years. Had my gallbladder removed in Jan. 2004. I was fine for about 6 months then the celiac symptoms started. I went to a recommended GI doctor in 2005 and had tons of tests done. Everything, including blood tests and biopsy are negative. He just wrote on my charts IBS and told me that I'm one of a small percentage of women that have trouble after the gallbladder is removed.

Originally I was only haveing trouble digesting fats, and I was able to control my diet by eating very low fat for about 6-8 months. But now I have having trouble eating ANYTHING!!! I also have started trouble with acne (I'm 30 years old and have never had acne), abnormal monthly cycles, and extreme shifts in mood/energy that change by the hour. Oh yes, I forgot -- I'm having anxiety issues out of the blue and trouble falling asleep.

In my gut (no pun intented) I feel that I have slowly emerging celiac and have read that in some rare cases you'll have a negative biopsy and blood test.

What should I tell my doctor? I have also heard of stool testing being done for celiac. Can anyone tell me if those are valid tests or not?

I know I can go gluten-free and see how I feel, but I don't want to do that until after I talk to my doctor some more.

Any help/opinions are appreciated.

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Lisa Mentor
Lisa
Posted

I would think that the evidence would point to Celiac given your strong family history.

You have the option to go gluten free and forgo further testing and determine if it is Celiac or intolerance by positive dietary response. Remain on gluten for the full blood panel, or to retest the endoscopy (which results may be patchy).

Many here have chosen the diet rather than the expense of testing. It seem to work for them.

When I was test, I had never heard of Celiac. After the diagnosis, the first thing I did was get on the Internet to see what I had. And I never left.

You will get some great suggestions from the well informed, generous folks here.

CMCM Rising Star
CMCM
Posted

Your family history, your own health history, your surgery (possibly a trigger), your symptoms are strongly suggestive of celiac disease, or alternately, not active celiac (yet) but at least gluten sensitivity. The fact that your doctor "wrote" that you have IBS means nothing, nada, zilch....it just means he has no answer for you.

You should DEMAND (not timidly ask) your doctor to run a FULL celiac panel for you. ALL the tests, not just one or two like many doctors stupidly do. However, unless you have a fair degree of intestinal damage, your blood tests may be negative. Even a biopsy is not always conclusive when negative. A positive endoscopy is 100% but a negative one is not. Some people have damage, but it is patchy, easy to miss, or still too microscopic to be observed, especially by a doctor who is not entirely familiar with all this.

If you have been eating gluten regularly, a blood test at this point may be useful. Additionally, you could get a gene test to see if you have a celiac gene. Enterolab's gene test is $169 and takes a couple of weeks to get the results.

Finally, if your doctors dismisses the concern about celiac disease and doesn't seem to know much about it, I'd say emphatically to find another doctor. Interview them and find one who KNOWS about celiac disease. And learn about it yourself....a good place to start is the book "Dangerous Grains", on Amazon for about $10.

I'm glad I found this forum. I'd like some input on what to ask my doctor before I go in again in April.

Here's a brief history. My mom and sister both have biopsy proven celiac. Mom also has type 1 diabetes and autoimmune thyroid disease. My son also has type 1 diabetes. I have autoimmune thyroid disease and extremetly high levels of antibodies for type 1 diabetes.

Okay, that said, I have been having tons of celiac symptoms for several years. Had my gallbladder removed in Jan. 2004. I was fine for about 6 months then the celiac symptoms started. I went to a recommended GI doctor in 2005 and had tons of tests done. Everything, including blood tests and biopsy are negative. He just wrote on my charts IBS and told me that I'm one of a small percentage of women that have trouble after the gallbladder is removed.

Originally I was only haveing trouble digesting fats, and I was able to control my diet by eating very low fat for about 6-8 months. But now I have having trouble eating ANYTHING!!! I also have started trouble with acne (I'm 30 years old and have never had acne), abnormal monthly cycles, and extreme shifts in mood/energy that change by the hour. Oh yes, I forgot -- I'm having anxiety issues out of the blue and trouble falling asleep.

In my gut (no pun intented) I feel that I have slowly emerging celiac and have read that in some rare cases you'll have a negative biopsy and blood test.

What should I tell my doctor? I have also heard of stool testing being done for celiac. Can anyone tell me if those are valid tests or not?

I know I can go gluten-free and see how I feel, but I don't want to do that until after I talk to my doctor some more.

Any help/opinions are appreciated.

tabdegner Apprentice
tabdegner
Posted
  • Author

Thanks for the replies. I go to a good GI doctor who has been recommended by other celiacs. I have had the full blood panel come back negative -- but that was several years ago and my symptoms are worse now than they were then. The biopsy was also a few years ago.

My appointment is April 9th -- and I plan on going gluten-free after any tests the dr wants to do. I'm at the point where it can't hurt. And after reading on this forum about people going through the same thing with the same symptoms, I'm more encouraged to try gluten-free to see if it helps.

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

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    • trents
      Accuracy of testing concerns

      By trents · Posted

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    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
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