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Jsny1010

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Jsny1010 Rookie
Jsny1010
Posted

My biopsy was negative for celiac, the doctor told me that my blood tests could be from an intolerance to gluten.. so he wants me to go 1 week without gluten (already doing that) and than add it back and do 1 week without any dairy and than see him again.

Is it possible to test positive on EMA IgA, and Gliadin IgG High, and have that just be a false positive?

The reason id like to know for sure is my sister was diagnosed with Lupus, and Fibromyalgia when she was younger, as well as lactose intolerance, and my nieces also have a problem with lactose it seems..but i've never had an issue until the last 5 or so years after my Divorce all of my issues started up, getting worse as time went on now i have a huge problem eating pasta it makes me sick about 18 hours after i eat it.

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Roda Rising Star
Roda
Posted

My biopsy was negative for celiac, the doctor told me that my blood tests could be from an intolerance to gluten.. so he wants me to go 1 week without gluten (already doing that) and than add it back and do 1 week without any dairy and than see him again.

Is it possible to test positive on EMA IgA, and Gliadin IgG High, and have that just be a false positive?

The reason id like to know for sure is my sister was diagnosed with Lupus, and Fibromyalgia when she was younger, as well as lactose intolerance, and my nieces also have a problem with lactose it seems..but i've never had an issue until the last 5 or so years after my Divorce all of my issues started up, getting worse as time went on now i have a huge problem eating pasta it makes me sick about 18 hours after i eat it.

So were you positive on all of those tests? The EMA is pretty specific to celiac. You possibly may have gotten a false negative biopsy. It can happen a number of ways: GI doc didn't take enough samples(it is recommended to have a minimum of 8-11 samples taken in the first part of the small bowel from different areas), damage was patchy and the damaged areas were not sampled(villi blunting is only seen microscopically), inexperienced pathologist intepreting the biopsy, the damage was past the point the scope could reach, or you don't have any villi damage yet.

Rarely there is false positives on blood work. In some cases the tTG can be elevated in other autoimmune diseases. But if you had a positive IgA EMA then I would say you have celiac despite what your biopsy said. Get a copy of your scope report and see what it says.

Jsny1010 Rookie
Jsny1010
Posted
  • Author

Yeah, I did as much research and read alot of the clinical studies about the EMA i tested positive on those, my tTG iga/g was within the normal range but he didnt run a complete iga on me so without being a hypocondriac ive just let the doctors kind of give me guidance and the GI i have doesnt talk to me he just tells me the reports and leaves thinking about finding another GI to switch to that might share more. But the EMA IgA was positive which seems to be between 95% - 98% ish , but titer only 1:10 im assuming thats why they didnt see anything wrong not sure.. im waiting for copies of the reports

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

My biopsy was negative for celiac, the doctor told me that my blood tests could be from an intolerance to gluten.. so he wants me to go 1 week without gluten (already doing that) and than add it back and do 1 week without any dairy and than see him again.

Is it possible to test positive on EMA IgA, and Gliadin IgG High, and have that just be a false positive?

The reason id like to know for sure is my sister was diagnosed with Lupus, and Fibromyalgia when she was younger, as well as lactose intolerance, and my nieces also have a problem with lactose it seems..but i've never had an issue until the last 5 or so years after my Divorce all of my issues started up, getting worse as time went on now i have a huge problem eating pasta it makes me sick about 18 hours after i eat it.

This kind of doctor ignorance about Celiac is driving me CRAZY!!! You had a positive EMA and the GI doc is telling you you don't have Celiac?? WTF? Why are docs so hung up on biopsies??? The blood work, especially EMA and the DGP are VERY SPECIFIC for Celiac! What about that do they not get? It's like their ego gets in the way, no way can they dx someone without sitcking THEIR camera down your throat and seing for themselves. Then if things don't look like what they saw in the textbook, you don't have it. Ugghhh... :angry:

You had positive blood tests (very specific ones, at that), and gluten makes you sick. Have you had the gene test to see if you have the common genes for Celiac? That could give you some helpful info. I'd say based on the EMA alone, you have Celiac.

BTW, there are no blood tests for gluten intolerance. Your doc is misinformed about that.

Jsny1010 Rookie
Jsny1010
Posted
  • Author

BTW, there are no blood tests for gluten intolerance. Your doc is misinformed about that.

Yeah no kidding, when he told me that I thought you have to be kidding me.. im having an auto-immune response to gluten but its not celiac.. ah yeah im going to goto another doc this one has already caused me enough grief

I haven't had the Gene test, do I request that from my doctor or do I need to goto a separate company?

Metoo Enthusiast
Metoo
Posted

Yeah no kidding, when he told me that I thought you have to be kidding me.. im having an auto-immune response to gluten but its not celiac.. ah yeah im going to goto another doc this one has already caused me enough grief

I haven't had the Gene test, do I request that from my doctor or do I need to goto a separate company?

I would see another doctor if you want an official diagnosis. The blood test shows you have celiac. Not all doctors require a positive biopsy anymore to diagnose you with celiac.

Skylark Collaborator
Skylark
Posted

Yeah no kidding, when he told me that I thought you have to be kidding me.. im having an auto-immune response to gluten but its not celiac.. ah yeah im going to goto another doc this one has already caused me enough grief

I haven't had the Gene test, do I request that from my doctor or do I need to goto a separate company?

The gene test is not diagnostic. It only gives some statistics on how likely you are to be celiac.

I don't understand why you would go to another doctor. Are you looking for permission to go on the diet? A diagnosis that will follow you around when you try to get insurance? Another doctor will not get you different test results. You are most likely developing celiac - mild EMA+, positive anti-gliadin IgG, negative biopsy, right? You need to go on the diet and see if it helps and if so, the wisest course of action would be to assume you are celiac.

Your other option is to keep eating gluten until you are so sick you have damage on biopsy and tons of antibodies but I wouldn't recommend it.

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Jsny1010 Rookie
Jsny1010
Posted
  • Author

The gene test is not diagnostic. It only gives some statistics on how likely you are to be celiac.

I don't understand why you would go to another doctor. Are you looking for permission to go on the diet? A diagnosis that will follow you around when you try to get insurance? Another doctor will not get you different test results. You are most likely developing celiac - mild EMA+, positive anti-gliadin IgG, negative biopsy, right? You need to go on the diet and see if it helps and if so, the wisest course of action would be to assume you are celiac.

Your other option is to keep eating gluten until you are so sick you have damage on biopsy and tons of antibodies but I wouldn't recommend it.

Well I've been on the diet for a week now, i feel much better all around - not 100% but its progress. I said I would go find another because this doctor wont acknowledge anything I tell him, he wants me to eat dairy this week, which will upset my stomach and than gluten next week which will do the same and come back to him with the results, after that who knows.. he wouldn't discuss the biopsy results with me at all he just told me to do these two "trials" and walked out of the room.

Skylark Collaborator
Skylark
Posted

I didn't make myself clear. I'm not saying this doctor is good. He sounds like an absolute jerk. I'm wondering what the point is of getting another GI. Chances are good gluten-free/casein free will fix you. :) A GP can order vitamin D and B12 tests and it's a good idea to get them.

If you are in the US you have a legal right to go to the office and ask for your biopsy report. We can help you understand the terminology in it.

Jsny1010 Rookie
Jsny1010
Posted
  • Author

I didn't make myself clear. I'm not saying this doctor is good. He sounds like an absolute jerk. I'm wondering what the point is of getting another GI. Chances are good gluten-free/casein free will fix you. :) A GP can order vitamin D and B12 tests and it's a good idea to get them.

If you are in the US you have a legal right to go to the office and ask for your biopsy report. We can help you understand the terminology in it.

Ah yeah, no I understand that - I figured with these types of issues it would be good to monitor at some point to see if the blood work would come back normal after a while on this diet, honestly i've never dealt with any issues like this before - im use to going to the doc and just doing what they tell me to. i'll get that report and post that up here

Skylark Collaborator
Skylark
Posted

Ah yeah, no I understand that - I figured with these types of issues it would be good to monitor at some point to see if the blood work would come back normal after a while on this diet, honestly i've never dealt with any issues like this before - im use to going to the doc and just doing what they tell me to. i'll get that report and post that up here

Most doctors don't know enough about celiac disease to do that. The best way to get well is to learn to take a more active role in your care. :)

Salima Newbie
Salima
Posted

As a newbie, I see a lot of people suggesting Vitamin D and B-12 testing. Why? Is this realted to Celiac's somehow?

Thanks

Roda Rising Star
Roda
Posted

As a newbie, I see a lot of people suggesting Vitamin D and B-12 testing. Why? Is this realted to Celiac's somehow?

Thanks

Because of the malabsorption it can cause(this is seen in NCGI too) deficiencies is vitamins and minerals. Some of the big ones to have checked are all the fat soluable vitamins(D,K, A, E) and vitamin B12, folate, iron, and ferritin.

Salima Newbie
Salima
Posted

Because of the malabsorption it can cause(this is seen in NCGI too) deficiencies is vitamins and minerals. Some of the big ones to have checked are all the fat soluable vitamins(D,K, A, E) and vitamin B12, folate, iron, and ferritin.

Huhn. Well that's interesting as my yearly blood work requested by my GP just came back showing low free t3 thyroid, low B-12 and low Vit. D. My liver enzymes were slightly elevated, too, but not worringly so. Everything else seemed pretty right on.

Thanks for the insight!

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