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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is A Biopsy Really Necessary?
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9 posts in this topic

Hi, I'm new to this site as well as being gluten free. 

 

My main question is, do I really need to have a biopsy or to be diagnosed?

 

I went to a nutritionist about 3 years ago because I was so tired, that I thought maybe something was wrong with my thyroid.  AFter a ton of blood work she told me that I had a malabsorption problem and that I wasn't absorbing amino acids, Vitamin D, and iron to name just a few.  She said I most likely had Celiac Disease and told me to try eating gluten free and also ordered  a blood test (I can't remember which one exactly).  The blood test was negative.  I went gluten free for a week but didn't really notice a difference.

 

Shortly after I was also diagnosed with PVC's, an irregular heart arrythmia and put on beta blockers which helped with my fatigue.  Could my PVC's also be a reaction to gluten?

 

So I ignored the celiac somewhat diagnosis until recently when I made myself realize that my multiple loose bowel movements a day were not normal even though they have been normal to me.  I guess I did not classify them as diarrhea but it really is.

 

I have been gluten free for almost 2 months now and have normal bowel movements and feel better.  I did however eat 2 slices of pizza to see what would happen.  Nothing happened for almost 24 hours then severe diarrhea (15-20 times a day) for at least 2 days but really not normal for almost a week.

 

My main question is, do I really need to have a formal diagnosis with a biopsy? 

I felt so bad eating 2 slices a pizza that the thought of a gluten challenge prior to a biopsy really terrifies me. 

 

Thank you and sorry for the long story :)

 

Kathy

 

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Not really, but you will need to let you doctor know that celiac disease is suspected so you can keep an eye on all the other health issues that can go along with it like osteopenia, thyroid issues and propensity to get other autoimmune disorders (like diabetes), lactose intolerance and possible leaky gut issues, and nutritional deficienies like potassium, iron, ferritin, calcium, D, B's (B12 most often), and a few others like zinc. That looks like a scary list but most people only end up with a couple of extra problems that can, with time, be fixed.

 

I have no idea about the PVC's but I'm glad you are feeling better.

 

If you want a biopsy, you'll need to resume eating gluten. I believe the time required on a gluten challenge for a biopsy is less than that required for blood tests but I don't know a lot about that. I *think* it's 2-6 weeks on gluten for a biopsy whereas it is 4-12 weeks (8 or more being best) for blood work.

 

You could try having the blood work done ASAP and there might still be adequate autoantibody levels to have a positive test. Some celiacs' levels stay high for a year whereas some fall to normal within weeks. there's really no way of knowing which you are. if you get blood tests, get a few done as that helps to avoid a false negative.  the celiac tests are listed on pages 11-12 on this report: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Good luck!

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I read somewhere that they like to do a biopsy to see how much damage is done. every once in a while they will do another to see if your healing. They can give you what I call "Super Vitamins" to help with lack of vitamins you have not been getting from eating gluten. If you heal 100% then you may not need extra nutritional help. So I would go with a biopsy , if you already are diagnosed with Celiac maby do the biopsy with out changing your diet and see if there is any left over damage. 

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Thanks so much for your responses!  It's great to hear from others in the same boat.

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Thanks so much for your responses!  It's great to hear from others in the same boat.

The answer to your main question is No, you don't have to have a biopsy for diagnosis, but it'll probably be requested by your gastroenterologist. Most doctors will refer you to a gastroenterologist. Look for an internist or other doctor who specializes in digestive disorders and nutrition issues.  My biopsy was negative after 30 days of eating guten.  My digestive issues got worse every day I was eating wheat, and it took 2 months to feel better after I stopped.  While the gastroenterologist didn't diagnose me celiac due to the negative biopsy, another doctor did so following a diagnosis of autoimmune (Hashimoto's) thyroiditis, B12 deficiency following the 30 days eating gluten, and positive DNA tests for celiac and gluten sensitivity (Enterolab).  I've also heard of people having negative DNA tests and positive biopsy.  The more information you can provide, the better.  Keep meeting new doctors with different clinical specialties.  Look for autoimmunity, which is common with celiac.  If you know eating gluten will be horrible, have some testing done in the other areas.

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I know I am kinda in the same boat, 1st they said I didn't have Celiac, I went off Gluten just for my self!! It made me feel great!! Now they say I do have Celiac. They want me to go to gastroenterologist <-- think thats what they said. So I thought I should go back on Gluten. hmmmm maby I shouldn't .... It is all so very confusing!!! I just don't know!! I am already diagnosed tho. Ughhhh!! 

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I have the same question, I have read some studies that say the chances of a false negative coming back on the biopsy are higher than an false positive on a blood test when the TTG is over 100.  Any thoughts?

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I didn't think I could handle a gluten challenge either.  It seemed unethical to take in gluten having seen what things it had been doing to me.  I did a genetic test which came back positive with 4/4 alleles tested for.  I took this to the MD and with my belly looking 5 months pregnant she had a look.  My bloating really went nuts for a while just after going gluten free.  I described to her some of the changes since going gluten free and she told me that I had celiac. It is a good thing to have a doctor that has a respect for her patients and listens. 

 

My functional medicine nurse feels my tummy at the point where the small intestine is, and it is a tender spot.  Has anyone had that done?  I remember the MD feeling, but she made no comment.  Evidently, in normal situations this area is not tender.

 

We did not do a biopsy.  I had a nutrient test and was deficient and had markers for mal-absorption.  I also had tests to discover foods that I had antibodies for.  Nearly everything I had been eating, I had antibodies for.  This suggested leaky gut.  My test showed pancreatic insufficiency.  The nurse felt this was caused by damaged villi being unable to tell the pancreas to fire.

 

 A biopsy could be used to diagnose and access damage if one needs it.  I decided to concentrate on healing and do nutrient tests in order to see if the body is getting nutrients as I go along.  I believe that is what the real goal is to maximize the body's use of nutrients.  I had my thyroid tested, but I think they just did the one test, so last week, I had some more thyroid testing done.  I also did kidney tests.

 

My method might be different and perhaps wouldn't do for all doctors and patients, but it kept me from a gluten challenge.  That would be a good thing in my opinion.

 

 

D

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I didn't think I could handle a gluten challenge either.  It seemed unethical to take in gluten having seen what things it had been doing to me.  I did a genetic test which came back positive with 4/4 alleles tested for.  I took this to the MD and with my belly looking 5 months pregnant she had a look.  My bloating really went nuts for a while just after going gluten free.  I described to her some of the changes since going gluten free and she told me that I had celiac. It is a good thing to have a doctor that has a respect for her patients and listens. 

 

My functional medicine nurse feels my tummy at the point where the small intestine is, and it is a tender spot.  Has anyone had that done?  I remember the MD feeling, but she made no comment.  Evidently, in normal situations this area is not tender.

 

We did not do a biopsy.  I had a nutrient test and was deficient and had markers for mal-absorption.  I also had tests to discover foods that I had antibodies for.  Nearly everything I had been eating, I had antibodies for.  This suggested leaky gut.  My test showed pancreatic insufficiency.  The nurse felt this was caused by damaged villi being unable to tell the pancreas to fire.

 

 A biopsy could be used to diagnose and access damage if one needs it.  I decided to concentrate on healing and do nutrient tests in order to see if the body is getting nutrients as I go along.  I believe that is what the real goal is to maximize the body's use of nutrients.  I had my thyroid tested, but I think they just did the one test, so last week, I had some more thyroid testing done.  I also did kidney tests.

 

My method might be different and perhaps wouldn't do for all doctors and patients, but it kept me from a gluten challenge.  That would be a good thing in my opinion.

 

 

D

I have had pain in my gut for years!! I'd complain they would push around and say "does this hurt?" I'd say no.. Seems every time they touched me it wouldn't hurt. They took my Gall Bladder out We won't get into everything they took out , but still the pain! All the time!! And now I go on Gluten free and the pain is gone!! I cannot believe it!! So they say to stay on Gluten to get the other test done? Hmmm thats kinda hard for me to do!!! After years of being in pain and now I am am free!! They want me to go back to pain for 6 more weeks? I don't think I can do that!! They told me I had iCeliac and thats what I am going by!! :) 

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