Was I Diagnosed?

[EmilyD]

Hi everyone,

I have been having a ton of stomach problems for the past few months including extreme bloating, diarrhea, discolored stools, occasional constipation, stomach pain especially in the lower left side (is that a big indication?), occasional nausea and vomiting, anemia, and more lately I have been getting hypoglycemic to the point of almost passing out. I was seeing a gastro who was unhelpful. He did an endoscopy and colonoscopy and said he saw that my duodenum was inflamed and he saw gastritis. He just told me it was IBS so I decided to start seeing a new gastro. The new gastro suggested it sounded like Celiac Disease. She ran the full celiac panel and told me Monday that it was positive. She sent me for biopsies yesterday, and I was very sleepy afterwards but I think what the doctor said was that he didn't see anything visibly abnormal, but he took several biopsies and we would discuss them in 2 weeks.

So is it possible that blood test is positive with negative biopsies? Since he didn't see anything wrong with his eye, I feel like that means the biopsies will more than likely be negative. If so does this mean I don't have it? If it is negative, what do the positive blood tests indicate? And what should I do for the next two weeks until I hear? Continue eating gluten or no?

Sorry for the many questions! I am just totally new to this and lost! I would like to know the cause of my suffering but the thought of never eating gluten again seems like a lot to deal with right now! Thanks so much for your help!

[Lisa]

Yes! Welcome to the Club! A positive blood test in conjunction with your symptoms, that is a diagnosis. Your endo exam may have missed effected areas or it could have been caught before detectable damage could occur.

Positive dietary results can also be diagnostic. You can begin the diet immediately. Keep it simple with meats, fish, rice, potatoes, fresh veggies and fruit. Avoid processed food for a while and limit your dairy.

Welcome again!

[rosetapper23]

Because you have positive bloodwork and symptoms of celiac, you probably DO have celiac--regardless of whether or not the biopsy is negative. Your gastro should have taken between 6-12 biopsies, not several. That's a tip-off that he is not well versed with diagnosing celiac disease. Biopsies are notorious for resulting in false-negatives either because of the inexperience or ineptness of the surgeon or the pathologist. Also, the scope may not be able to reach the damaged part. Lastly, it's possible that you have celiac but have not yet developed damaged villi. Generally, if the bloodwork is positive, symptoms resolve on a gluten-free diet, and the symptoms reappear upon reintroduction of gluten, you can take it to the bank that you have celiac.

By the way, a gluten-free diet is easy, nutritious, and satisfying. The only time it has caused me stress is when eating out or at friends' homes. I always bring my own food to picnics, potlucks, and friends' homes, and more and more restaurants are offering gluten-free menus. Keep in mind that there are many gluten-free substitutes for your favorites: donuts, pizza, breads, baguettes, pancakes, cookies, etc. The only thing I've craved and can't find is a gluten-free croissant--but I'll live. Now that you'll be eating gluten free, just remember that eating natural (versus processed) foods at the beginning is important--you'll need the nutrients and assurance that you're avoiding all gluten contamination. You can add in gluten-free substitutes after a few months.

[mushroom]

Your biopsies could well be positive. The reason they take them and look at them under the microscope is that the damage is often not visible on strictly visual examination. Wait for your results.

[ravenwoodglass]

Since you have had the testing you need to have done you can now start the diet. You need to be on the diet no matter what the results of the biopsy as your blood test was positive. As others mentioned the biopsies can have false negatives so do keep on the diet even if that test isn't positive. Ask any questions you need to and read as much as you can here.

[jswog]

Your biopsies could well be positive. The reason they take them and look at them under the microscope is that the damage is often not visible on strictly visual examination. Wait for your results.

Mushroom, can you please call the GI who did mine and tell him that?

[Duhlina]

So is it possible that blood test is positive with negative biopsies? Since he didn't see anything wrong with his eye, I feel like that means the biopsies will more than likely be negative. If so does this mean I don't have it? If it is negative, what do the positive blood tests indicate? And what should I do for the next two weeks until I hear? Continue eating gluten or no?

It is possible, but not probable. My GI let my husband stay in the room while he did the endoscopy. He almost 100% GUARANTEED my husband that there was NO WAY I had Celiac. He said my villi were 100% normal and he saw no damage at all. I think even HE was a little embarrassed when my biopsies came back positive!

Keep us posted!

[Di2011]

And if you don't find the diet easy let us know. I'm not diagnosed celiac but what might be Dermatitis Herpetiformis and non-celiac gluten intolerance. It took me a while to get to grips with some health improvement. Been soooo well worth it regardless of diagnosis or not. Don't be afraid to let us know how you are doing. It can be hard with food, habits, family, friends etc..

[EmilyD]

So I had my follow up after the biopsy today, and the doctor told me they were negative. Since I had the biopsy I have been eating gluten free, and I think I have started to feel a bit better. The doctor now says that I should eat gluten for the next month and repeat the blood tests, even though they were all very positive the last time I had them done. He said he feels like I probably have it, but we have to make sure. I don't know what to do. I am very frustrated, as I was starting to feel hopeful and positive about finally feeling better. Basically I am sick of going to the doctor, and he said that if the blood tests aren't positive in a month, then it is probably IBS. What should I do? Follow his advice or just stick to the gluten free diet and save myself a month of feeling horrible? Blurgh. Thanks for your help and sorry to ramble, I am just very frustrated.

[Skylark]

So I had my follow up after the biopsy today, and the doctor told me they were negative. Since I had the biopsy I have been eating gluten free, and I think I have started to feel a bit better. The doctor now says that I should eat gluten for the next month and repeat the blood tests, even though they were all very positive the last time I had them done. He said he feels like I probably have it, but we have to make sure. I don't know what to do. I am very frustrated, as I was starting to feel hopeful and positive about finally feeling better. Basically I am sick of going to the doctor, and he said that if the blood tests aren't positive in a month, then it is probably IBS. What should I do? Follow his advice or just stick to the gluten free diet and save myself a month of feeling horrible? Blurgh. Thanks for your help and sorry to ramble, I am just very frustrated.

Tell him to bugger off and save yourself another month of illness and autoimmune damage. One positive test and the rest negative could conceivably be a lab error, but not high positives on the full celiac panel! If he suspects a lab error and wants to retest you, what is the point of waiting a month? Stupid doctors... You almost certainly have celiac and the sensible way to be sure is to go gluten-free and see if you feel better, not to keep poisoning yourself for another month.

Developing celiac disease can be a gradual process and in some people the blood test is positive well before there is enough autoimmune tissue damage that a poorly executed biopsy will catch it. This is why good GI doctors take 7-10 samples in the hopes of catching patchy damage.

Go back in six months and ask for a TTG test to make sure the diet is working and your antibodies have gone away, or are at least falling. Sometimes it takes a while if your levels were really high. Disappearance of antibodies and recovery of your health gluten-free leaves no question whatsoever about celiac except to confused doctors.

[ravenwoodglass]

What should I do? Follow his advice or just stick to the gluten free diet and save myself a month of feeling horrible? Blurgh. Thanks for your help and sorry to ramble, I am just very frustrated.

Tell the doctor thanks but no thanks. Follow Skylark's advice and stay strictly gluten free and then go back in six months to retest and see if the levels have gone down. That and feeling better on the diet is proof enough that the diet is needed and your doctor should be able to diagnose you based on that.

[Di2011]

Hi Emily,

Sounds like you have joined our Gluten free family. Don't let the doc dictate. It is your body and your sanity.

Does your brain/body/soul tell you to stay on gluten?

[Ellie84]

Most likely the test will be positive, those are tell-tale symptoms. If he test is negative, you still may benefit from a gluten-free diet. 1% of all people has celiac disease, but there's another estimated 6% with non-coeliac gluten sensitivity.

Welcome to the club anyway Your health will only improve from now!

[Di2011]

So I had my follow up after the biopsy today, and the doctor told me they were negative. Since I had the biopsy I have been eating gluten free, and I think I have started to feel a bit better. The doctor now says that I should eat gluten for the next month and repeat the blood tests, even though they were all very positive the last time I had them done. He said he feels like I probably have it, but we have to make sure. I don't know what to do. I am very frustrated, as I was starting to feel hopeful and positive about finally feeling better. Basically I am sick of going to the doctor, and he said that if the blood tests aren't positive in a month, then it is probably IBS. What should I do? Follow his advice or just stick to the gluten free diet and save myself a month of feeling horrible? Blurgh. Thanks for your help and sorry to ramble, I am just very frustrated.

Hi Emily - I just reread your post .. This post is actually for our other forum members that are so much better with these technical/testing issues than I am:

I might have some of the logic wrong so anyone please correct me if I'm wrong:

On Gluten + blood testing = very positive

On gluten + biopsy = negative = could be negative or false negative

On gluten + one month from now = more of the same results or there abouts

Off gluten + one month from now = possible/probable negative blood tests

???? Is this logically/medically reasonably thinking?