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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

My Biopsy Word For Word
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troykm    4

This is what was found in my biopsy.

"Sections consist of a single fragments of heavily denuded duodenal mucosa with an abnormal architexture comprising mild to moderate villous atrophy associated with crypt hyperplasia. There is a significant generalized increase in intraepithelial lymphocytes associated with degenerative changes with in the remaining surface epithelium. Within the lamina propria there is a mild increase in mixed inflammatory cells. parasite are not seen. The appearances are those of a moderate variable villous abnormality without diagnostic histology. A differential diagnosis include celiac disease, other protein allergies, infectious gastroenteritis and nonspecific chronic duodenitis. The appearance is consistent with but not diagnostic of partially treated cealiac disease."

So what is that saying? Yes to celiac or it may be one of many other things?

Did yours say anything like this?

Thanks

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Jestgar    715

I would interpret this as: "showing some initial, overall inflammation, but not yet severe enough to point to one specific cause. Are you gluten-free? How do you feel?

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troykm    4

I would interpret this as: "showing some initial, overall inflammation, but not yet severe enough to point to one specific cause. Are you gluten-free? How do you feel?

Yes I want gluten free after this biopsy result as the Gi Dr said it was most likely celiac. But after that my blood work

came back negative for antibodies so now she is not sure and is freaking me out. She just keeps saying hmmm not sure let's catch up again in two weeks bla bla bla. I stI'll don't have the genetic test results yet but hopefully they come Monday.

Yes I'm gluten free and felt great for the first 2 weeks. Symptoms started to go. My post nasal drip has stopped and that I've had from childhood. Even had two operations to fix it but neither worked. Even my throat just feels more open if that makes sense. But this week I am feeling very tired, lethargic, slight anxiety and some muscle weakness. Is that just gluten withdrawal?

Thanks

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troykm    4

I should add that I'm questioning all this because my GI Dr has suggested that (as I am gay) that I may have hiv as that can cause celiac like things. Now unless hiv has become air born in the last few years it's not possible but she has made me panic now. What if!

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ravenwoodglass    1,221

Some of us can have false negatives on blood work. The biopsy results do suggest celiac so glad to hear you are giving the diet a shot. We do have ups and downs usually in the beginning as we get used to the new lifestyle. Hopefully the diet will take care of your problems but being on the diet will not mask testing for other stuff if that should be needed. I hope you continue to improve.

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ciamarie    23

I started getting headaches, as well as being very tired in the afternoon after about 3 weeks of eating gluten-free. I think that lasted about 2 weeks. However, you should probably double-check what you're eating, and possibly food prep areas, etc. to rule out being glutened. If you have improvement in a few issues, it sounds like that's your answer -- along with the biopsy results. Do you have your blood test results? If not, you should get those and post them here also. It's possible you only had partial tests. From what I've seen on here, it's not uncommon for only 1 or 2 of the full panel of tests to be positive; and sometimes not even that. It's not an exact science... so don't panic.

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ravenwoodglass    1,221

I should add that I'm questioning all this because my GI Dr has suggested that (as I am gay) that I may have hiv as that can cause celiac like things. Now unless hiv has become air born in the last few years it's not possible but she has made me panic now. What if!

Don't let the doctor panic you. Sometimes doctors just like to scare the heck out of us. If she thinks that she should order a test for HIV to rule it out in her mind.

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nvsmom    332

Yes I'm gluten free and felt great for the first 2 weeks. Symptoms started to go. My post nasal drip has stopped and that I've had from childhood. Even had two operations to fix it but neither worked. Even my throat just feels more open if that makes sense. But this week I am feeling very tired, lethargic, slight anxiety and some muscle weakness. Is that just gluten withdrawal?

Thanks

I've been gluten-free for just a few weeks and had terrible withdrawl with a headache that lasted well over a week (now it's just sporadic), a bunch of fatigue, and I was so so grumpy that even I couldn't stand myself. The withdrawl is starting to get better for me now, so hang in there! ;)

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Your biopsy sounds like a description of celiac disease.

Were your blood tests taken after you went gluten free? Even a few days can alter the results.

My son had negative blood test on the most common tests (TTG Ig A and DGP IgA) but he had a positive endoscopy and clearly has celiac disease.

Sometimes the blood tests can be negative and you can still have celiac disease.

Feeling slightly worse after going gluten free can just be a sign of withdrawal. Keep going, you will feel better soon.

Cara

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troykm    4

Well I had an hiv test and it's negative. So it really is celiac :-)

And I'm going to have words with DR GI for terrifying me so casually. Lol

So I'm a member :-) odd that I should be so happy but I am.

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jerseyangel    409

Well I had an hiv test and it's negative. So it really is celiac :-)

And I'm going to have words with DR GI for terrifying me so casually. Lol

So I'm a member :-) odd that I should be so happy but I am.

What a relief! Welcome to the community :D

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squirmingitch    495

Well I had an hiv test and it's negative. So it really is celiac :-)

And I'm going to have words with DR GI for terrifying me so casually. Lol

So I'm a member :-) odd that I should be so happy but I am.

Welcome to the board! And this is a great place for you to get started:

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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beebs    61

Is that not terribly insulting? Is it also not illegal to insinuate that you could have HIV just because you are gay??? I am fairly sure that even if it isn't illegal it is not the done thing!

That result would have me thinking celiac straight away!

I should add that I'm questioning all this because my GI Dr has suggested that (as I am gay) that I may have hiv as that can cause celiac like things. Now unless hiv has become air born in the last few years it's not possible but she has made me panic now. What if!

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troykm    4

When it rains it pours! Just got my genetic test back. I have both the main genes and 7 subsets. Hooray I won the genetic lottery lol!

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squirmingitch    495

I guess that's what you call fate!

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troykm    4

but seriously, a very big big thank you to everyone on this forum who answered my posts and provided help.

Thank you all :-)

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davemu    0

The issue here is that they did a biopsy with a negative TTG. Usually one stops at a negative blood test unless one has convincing symptoms of celiac and/or a strong family history. This is why your doc is a bit unsure of how to interpret these results. That being said, in a otherwise healthy person with no recent gastrointestinal infection the pathology report is in keeping with celiac, though not conclusive. Did you have any soft markers of celiac on your bloodwork (anemia, low ferritin or folate, abnormal liver enzymes)? The real challenge here is that there is no way for you to use bloodwork as a measure of compliance to a gluten free diet (a negative test in a seropositive celiac on a gluten free diet will be negative after a few months)... There is an option of repeat biopsy after being gluten free but even then they might just inadvertently pick a healthy patch of bowel and you will erroneously conclude you have celiac. I suggest geneticist screening for HLA-DQ2 and DQ8. If you don't have these markers then it virtually eliminates the diagnosis. Unfortunately having these means you only MAY have it.

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troykm    4

The issue here is that they did a biopsy with a negative TTG. Usually one stops at a negative blood test unless one has convincing symptoms of celiac and/or a strong family history. This is why your doc is a bit unsure of how to interpret these results. That being said, in a otherwise healthy person with no recent gastrointestinal infection the pathology report is in keeping with celiac, though not conclusive. Did you have any soft markers of celiac on your bloodwork (anemia, low ferritin or folate, abnormal liver enzymes)? The real challenge here is that there is no way for you to use bloodwork as a measure of compliance to a gluten free diet (a negative test in a seropositive celiac on a gluten free diet will be negative after a few months)... There is an option of repeat biopsy after being gluten free but even then they might just inadvertently pick a healthy patch of bowel and you will erroneously conclude you have celiac. I suggest geneticist screening for HLA-DQ2 and DQ8. If you don't have these markers then it virtually eliminates the diagnosis. Unfortunately having these means you only MAY have it.

As per my post above, the genetic test was positive. The specialist is now convinced that its celiac. Nothing in my blood work was out of the ordinary although a few things were towards the low end but not under. She thinks my body was finding ways to compensate over the years. I also always took multivitamins so that could play a part too.

My two sisters were tested. One positive on blood and the other negative. But the negative one has the same symptom profile as me so she is having a biopsy anyway.

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Roda    186

I suggest geneticist screening for HLA-DQ2 and DQ8. If you don't have these markers then it virtually eliminates the diagnosis. Unfortunately having these means you only MAY have it.

That is not entirely true. There is at least one member I'm aware of on here that is diagnosed celiac without those two associated genes. Ravenwoodglas. Maybe she will chime in.

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troykm    4

That is not entirely true. There is at least one member I'm aware of on here that is diagnosed celiac without those two associated genes. Ravenwoodglas. Maybe she will chime in.

Thats true. My specialist told me 5% of celiacs don't have the genes and there is also a 25%ish false negative with the blood test. In her eyes if your positive to two out of 3 (biopsy, blood and genetic test) then you have it. I was positive in biopsy and genetic. Remember too all three ttests will yield different results depending on what stage of the disease you are at and whether your body is able to cope/compensate for it.

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ravenwoodglass    1,221

That is not entirely true. There is at least one member I'm aware of on here that is diagnosed celiac without those two associated genes. Ravenwoodglas. Maybe she will chime in.

Well I don't have one of the two most common celiac genes, or at least the ones considered celiac associated here. However my genes are recognized as celiac associated genes in the far and middle east. Here they are considered the genes for RA.

I most definately have celiac and after years of misdiagnosis the diet resolved many, many issues that were thought to be unrelated to my extreme GI issues. I also have DH.

IMHO relying on gene testing at this point in time to rule out celiac is a big mistake. I have one adult child who was both biopsy and blood test positive but then had her genes tested and was told the other tests were a false positive and she isn't really celiac. All her issues were attributed to 'stress'.

IMHO in the end it is how we respond to the diet followed strictly that is the best and most conclusive test at this point. Until they gene test every celiac that is diagnosed for research purposes they really won't know how many genes are associated with celiac and 'gluten intolerance' (which I consider just another form of celiac). Gene testing can not firmly rule in or out celiac.

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davemu    0

Well I don't have one of the two most common celiac genes, or at least the ones considered celiac associated here. However my genes are recognized as celiac associated genes in the far and middle east. Here they are considered the genes for RA.

I most definately have celiac and after years of misdiagnosis the diet resolved many, many issues that were thought to be unrelated to my extreme GI issues. I also have DH.

IMHO relying on gene testing at this point in time to rule out celiac is a big mistake. I have one adult child who was both biopsy and blood test positive but then had her genes tested and was told the other tests were a false positive and she isn't really celiac. All her issues were attributed to 'stress'.

IMHO in the end it is how we respond to the diet followed strictly that is the best and most conclusive test at this point. Until they gene test every celiac that is diagnosed for research purposes they really won't know how many genes are associated with celiac and 'gluten intolerance' (which I consider just another form of celiac). Gene testing can not firmly rule in or out celiac.

This is good to know. Thank you. I am going by current medical literature, which as we know is ever changing.

I do question the validity of diagnosing celiac based on 2/3 positive tests. That's an exceptionally unscientific way of making a diagnosis. I would be more inclined to look at your pre-test probability (the fact that immediate family history is positive and the fact that you have some symptoms to suggest celiac). In other words your chance before taking the test was pretty high already so that the biopsy results, even though inconclusive, allow a doctor to comfortably make a diagnosis. If your pre-test probability was very low (no symptoms and no family history) I would be less comfortable making a diagnosis with a negative bloodwork and inconclusive biopsy.

I also wonder about the sensitivity of the TTG blood test. Current knowledge indicates that 99% of celiacs will have positive tests, meaning a false negative is unlikely. Can anybody speak to their ecpxperience with this?

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ravenwoodglass    1,221

This is good to know. Thank you. I am going by current medical literature, which as we know is ever changing.

I do question the validity of diagnosing celiac based on 2/3 positive tests. That's an exceptionally unscientific way of making a diagnosis. I would be more inclined to look at your pre-test probability (the fact that immediate family history is positive and the fact that you have some symptoms to suggest celiac). In other words your chance before taking the test was pretty high already so that the biopsy results, even though inconclusive, allow a doctor to comfortably make a diagnosis. If your pre-test probability was very low (no symptoms and no family history) I would be less comfortable making a diagnosis with a negative bloodwork and inconclusive biopsy.

I also wonder about the sensitivity of the TTG blood test. Current knowledge indicates that 99% of celiacs will have positive tests, meaning a false negative is unlikely. Can anybody speak to their ecpxperience with this?

I don't think one can go off of a lack of family history since so many of us are misdiagnosed or diagnosed with something else (sometimes multiple something elses). Some of us will never show up positive on blood work, up to 30%, and biopsy is iffy also. If someone is not having symptoms then I wouldn't be concerned unless they are being screened because another family member is diagnosed and the non-symptomatic person is positive. When someone is having symptoms then a trial of the diet, IMHO, is the best test there is at present when all other celiac related testing is finished.

Current medical literature in the US is sometimes lacking a bit as far as celiac goes, IMHO. Other countries seem to have a better knowledge of celiac than we do here.

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