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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.

Possible Celiac?
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67 posts in this topic

Well, I'm sort of running out of possibilities for my problem.

 

Symptoms:

RUQ pain, after eating.

Bad, painful gas

Bloating/Borborygmi

occaisional unexplained diarrhea

Mild nausea from time to time

overweight

Hungry when I shouldn't be

intermittent fatigue

joint pain

GERD (controled with prilosec)

Thin enamel

Dry skin

Hair loss (but I'm male so who knows)

General skin issues (rashes, sensative skin)

Memory issues (i'm only 36)

 

I had my gallbladder out a month ago and these symptoms are actually worse than my gallbladder was and it feels different.

 

At this point my gastro doc is thinking Thyroid issue, Celiac (maybe both) or possible sphinctor of oddi dysfunction.

 

Had testing drawn yesterday for the Celiac panel and Thyroid panel, had CT, MRA, and Utra sound that all came back normal. No anemia.

 

 

Seems like if I have celiac I'm probably an odd case.

Edited by Fenrir
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Those could all be symptoms of celiac. It sounds like your doctor is on the ball. A lot of folks here had to beg, cajole, or demand celiac testing. And even then some of those doctors refused.

 

When you get the results, ask for a copy and then post them here. Also, keep in mind that even if they come back negative you might have non-celiac gluten intolerance. It gives you the same symptoms, but there is no test for it.

 

Make sure you continue to eat gluten as your doctor will probably want to do an edoscopy with biopsy, whether your tests come back negative or positive. That is because some folks show negative on the blood tests but the biopsy comes back positive. And if the bloodwork comes back positive, the biopsy will show exactly how much damage you have.

 

You should also get your nutrient levels tested. Celiac causes malabsorption which means you aren't getting the nutrients from your food.

 

Other folks will be along soon with other suggestions. In the meantime, welcome to the forum. :)

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Hi Fenrir and Welcome!

 

Actually... if you have Celiac you sound just like pretty much everyone else here.  Nothing about your case sounds odd.  Many of your symptoms sound extremely familiar - and there are a few folks on here that have had to have their gallbladder removed.  Do you know which tests they ran for Celiac?  That isn't something that typically comes back in a day.  Make sure to keep eating gluten until all of your testing is done because if the blood test comes back positive they will most likely want to do an endoscopy with a biopsy to confirm and you need to still be eating gluten for either the blood work or the biopsy to be valid.  Keep in mind that the tests aren't perfect.  While a false positive result is rare, false negatives happen more often than you'd hope.

Non-Celiac gluten intolerance is also a possibility and in that case the blood work and the biopsy will come back negative but if you go gluten free for a few months and then try eating gluten again and have a reaction (i.e. return of symptoms) then you'll know NCGI is the culprit.

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Those could all be symptoms of celiac. It sounds like your doctor is on the ball. A lot of folks here had to beg, cajole, or demand celiac testing. And even then some of those doctors refused.

 

When you get the results, ask for a copy and then post them here. Also, keep in mind that even if they come back negative you might have non-celiac gluten intolerance. It gives you the same symptoms, but there is no test for it.

 

Make sure you continue to eat gluten as your doctor will probably want to do an edoscopy with biopsy, whether your tests come back negative or positive. That is because some folks show negative on the blood tests but the biopsy comes back positive. And if the bloodwork comes back positive, the biopsy will show exactly how much damage you have.

 

You should also get your nutrient levels tested. Celiac causes malabsorption which means you aren't getting the nutrients from your food.

 

Other folks will be along soon with other suggestions. In the meantime, welcome to the forum. :)

 

 

Hi Fenrir and Welcome!

 

Actually... if you have Celiac you sound just like pretty much everyone else here.  Nothing about your case sounds odd.  Many of your symptoms sound extremely familiar - and there are a few folks on here that have had to have their gallbladder removed.  Do you know which tests they ran for Celiac?  That isn't something that typically comes back in a day.  Make sure to keep eating gluten until all of your testing is done because if the blood test comes back positive they will most likely want to do an endoscopy with a biopsy to confirm and you need to still be eating gluten for either the blood work or the biopsy to be valid.  Keep in mind that the tests aren't perfect.  While a false positive result is rare, false negatives happen more often than you'd hope.

Non-Celiac gluten intolerance is also a possibility and in that case the blood work and the biopsy will come back negative but if you go gluten free for a few months and then try eating gluten again and have a reaction (i.e. return of symptoms) then you'll know NCGI is the culprit.

 

 

Thanks for the replies.

 

Don't remember which celiac tests he ordered exactly but I believe it included the IgA, IgG, and TTG. It might say on the paperwork he gave me so if I find that I will post it later.

 

When I get the results back I will post them, he said it might be mid week next week before they are all back.

 

I will stay in gluten until it is excluded or we have a final DX.

 

Thanks, for the suggestion, I was thinking of just cutting it out to see if it made a difference.

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Well, my Dr. called me and said that the liver enzymes are mildly elevated and the celiac tests came back mildly positive. So, he says I need to have an endoscopy done to get a biopsy to confirm it. Can celiac cause liver enzymes to be elevated?

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Also, from what I've read if you are positive at all you pretty likely have Celiac. Isn't it something like 85-95% if you are positive at all?

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Hi Fenrir,

 

Yes, liver enzymes can be elevated in celiac.  They should return to normal after being gluten-free for a while, maybe 6 months or so.  Mildly positive results don't equate to a mild case of celiac.  The antibody reaction is mostly in the gut, so anti-bodies in the bloodstream are lower.  They concentrate in the gut where they do the damage.  Sometimes people have severe gut damage but only slightly elevated bloodstream antibodies.

 

The range of symptoms people get is really varied in celiac.  And it is not all that unusual for a person to be heavy vs. thin.  One thot about weight gain is the body is starving for nutrients (vitamins/minerals) and stores every calorie it can as a defense.

 

Celiac disease can cause mal-absorption and prevent us from getting the vitmains we need for our bodies to heal quickly.

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I agree. a mild positive is still a positive.... It's like taking a pregnancy test, for some people that double line is darker than for others, but pregnant is pregnant.

 

The specificity of celiac tests (except for the AGA tests) is usually 95% or so, some are as high as 99%. This report, on page 12, shows the specificity of the various tests (how often a positive is due to celiac disease): http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

In a small minority, a weak tTG IgA can be caused by other things like diabetes, crohns, colitis, thyroiditis, chronic liver disease, or a serious infection, but most of the time (95+%) it's positive due to celiac disease.  For example, I have celiac disease and thyroiditis; at first my tTG IgA was 10x the upper limit of normal (20) but after a year gluten-free it is a very weak positive of 20.9... it could still be coming down but my thyroiditis is slowing it down.

 

Be careful with the biopsy, false negatives do happen there, and with what looks like a greater frequency than the blood tests (from my observations). It can muddy up a diagnosis in some cases. Request the remaining celiac blood tests for back-up (tTG IgA and IgG, DGP IgA and IGG, EMA IgA, total serum IgA, AGA IgA and AGA IgG).

 

Best wishes.

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Thanks, for the replies.

 

While I don't want to have celiac disease, at least it looks like I might have an answer and might finally stop wondering what is wrong with me. In a way, I hope the biopsy confirms it so that I can move on with life. At least if it is Celiac I can just stop eating gluten and things should be a lot better.

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That's how I felt about diagnosis.  I didn't want to follow the diet, but if I did have it, it would be a great explanation for symptoms I had suffered from for years.  Now I am a little short of two years gluten free and so glad for the discovery.  After 30 years I am free of brain fog and extreme fatigue.  I am hoping the same for the relief of your symptoms!

 

D

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That's how I felt about diagnosis.  I didn't want to follow the diet, but if I did have it, it would be a great explanation for symptoms I had suffered from for years.  Now I am a little short of two years gluten free and so glad for the discovery.  After 30 years I am free of brain fog and extreme fatigue.  I am hoping the same for the relief of your symptoms!

 

D

Now that I look back I may have been having celiac symptoms for quite some time now. The problem was that I think until recently the symtoms were so random and hadn't yet interfered with my everydaty life that much so I just thought it was normal. Also, makes me wonder if I had this as a kid given I'm the shortest  male in the family by a good margin.

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I just called my brothers and told them to get tested as well. One has neurological issues from an unknown cause and the other has been diagnosed with Sarcoidosis, so it seems we have a strong run of autoimmune diseases in the genes. 

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Yep... saying you're "weakly positive" is like saying you're "weakly pregnant".  My ttg iga was only 13 on a test that considered anything over 11 to be positive - so "weakly positive".  However, the biopsy showed visible inflammation and moderate to severe villi damage.  While no one likes to hear they have Celiac, at least now you know what it is and the path back to good health is relatively simple.  No gluten.  You're not looking at surgery or a lifetime of meds that have all sorts of nasty side-effects.  Just a diet change.  Yes, it can be challenging at times but in the grand scheme of things it is not the worst disease to have if you have to have one.

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Yep... saying you're "weakly positive" is like saying you're "weakly pregnant".  My ttg iga was only 13 on a test that considered anything over 11 to be positive - so "weakly positive".  However, the biopsy showed visible inflammation and moderate to severe villi damage.  While no one likes to hear they have Celiac, at least now you know what it is and the path back to good health is relatively simple.  No gluten.  You're not looking at surgery or a lifetime of meds that have all sorts of nasty side-effects.  Just a diet change.  Yes, it can be challenging at times but in the grand scheme of things it is not the worst disease to have if you have to have one.

Yeah, that's the way I see it. I'd rather have celiac, know it, know how to deal with it and know I'm more than likely going to be fine than end up with some of the other problems it could be instead.

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OK, official numbers:

 

IgA+t-Tran Immunoglobulin A, Qn, Serum= 236 mg/dL  Range 91 - 414

 

t-Transglutaminase (tTG) IgA= 8 High U/mL  Range 0 - 3

Negative 0 - 3

Weak Positive 4 - 10

Positive >10

Tissue Transglutaminase (tTG) has been identified

as the endomysial antigen. Studies have demonstrated

that endomysial IgA antibodies have over 99%

specificity for gluten sensitive enteropathy.

 

Still waiting back for Liver Tests but the Dr. said they were a little high.

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Liver enzymes can be elevated in association with celiac disease. Have you stopped eating gluten or have you talked to your doctor about an endoscopy/biopsy? Seems like they threw the book at you with testing and are being really thorough.

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Liver enzymes can be elevated in association with celiac disease. Have you stopped eating gluten or have you talked to your doctor about an endoscopy/biopsy? Seems like they threw the book at you with testing and are being really thorough.

 

Yes, they have been very thorough. CT, MRI, Ultrasound, HIDA Scan, EGD, and practically every blood test under the sun. EGD was done before they realized it could be Celiac so no biopsies were done for celiac. Fair to say that they've ruled out practically everything else.

 

I have to schedule a biopsy, soon but still on gluten so I don't mess up the results. Problem is that the nearest place that does them is 2 hrs away so it is difficult to find time to do it. They also want to do a colonoscopy at the same time because my mother had colon cancer at 45 and they say you should have your first one 10 years before your parent was diagnosed with colon cancer.

 

I had my gallbladder out and now my GI doctor seems to think it may have been the celiac that killed it off. I didn't have gallstones, it just stopped working (only 10% function per the HIDA scan).

 

Unfortunately, it might be a few weeks before I can get in for the biopsy so I might have to put up with this for a while.

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Welcome to the club, Fenrir.  :)   I know... you didn't really want to be in this club... but it's not so bad once you get used to it.

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Welcome to the club, Fenrir.  :)   I know... you didn't really want to be in this club... but it's not so bad once you get used to it.

Thanks, it's a strange sort of club. Not a club that I wanted to be in but seems like a good groupd of people around here so it can only be good.

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I have some anxiety over this. I think it is most likely that I have Celiac but my mother had a liver failure due to Hep C and alcohol, but part of me can't help but think maybe she had PBC or something like that and it just wasn't diagnosed. It's probably just me being anxious I suppose.

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I have some anxiety over this. I think it is most likely that I have Celiac but my mother had a liver failure due to Hep C and alcohol, but part of me can't help but think maybe she had PBC or something like that and it just wasn't diagnosed. It's probably just me being anxious I suppose.

 

There is no use worrying over PBC yet. Hep C and alcohol are big hits for liver damage... those alone can cause liver failure. I just encourage you to wait on the extensive tests that were ordered and try not to stress over it. The liver also has the capability to heal.. so keep that in mind.

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I have to schedule a biopsy, soon but still on gluten so I don't mess up the results. Problem is that the nearest place that does them is 2 hrs away so it is difficult to find time to do it. They also want to do a colonoscopy at the same time because my mother had colon cancer at 45 and they say you should have your first one 10 years before your parent was diagnosed with colon cancer.

 

I had my gallbladder out and now my GI doctor seems to think it may have been the celiac that killed it off. I didn't have gallstones, it just stopped working (only 10% function per the HIDA scan).

 

Ah, the gallbladder club! My HIDA a showed 0% functionality and an infection. That was about seven years before my celiac disease dx. That was discovered when I went in for a routine colonoscopy. My only symptom then was anemia. I also think that celiac disease ruined my gallbladder.

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Hi Fenrir,

 

The link below will take you to a series of articles about the liver and celiac disease.  Some light reading for your weekend entertainment.  My understanding is that liver enzymes are often elevated in untreated celiac disease due to cell death releasing toxins into the blood stream.  I am thinking they call that cell apoptosis or some such like word.  The antibodies attack and destroy the vili lining ithe small intestine (made up of cells) and that causes the toxins.  So, if that is the problem, going gluten-free should resolve it after a while.  The antibodies decline after going gluten-free and the cell damage reduces or stops.  So then the liver can recover.

 

http://www.celiac.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders/Liver-Disease-and-Celiac-Disease/

 

Meanwhile on a somewhat sad note, while the gluten-free diet can help a lot of things I'm afraid your nose may be beyond hope even for gluten-free  eating to fix.  But it's ok, we like you just fine as you are. :)

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Protein, Total, Serum=  7.9 g/dL  range=6.4-8.2

Albumin, Serum=4.5 g/dl    range 3.4-5.0

Bilirubin, Total=0.7 mg/dl     Range 0.1-1.2

Bilirubin, Direct 0.2 mg/dl  Range 0.0-0.2

Alkaline Phosphatase, Serum= 158 U/L    Range=50-136 H

AST (SGOT)= 39 U/L   Range=0-37 H

ALT (SGPT)= 87 U/L Range= 0-65 H

A/G Ratio= 1.32     Range=1.00-2.00

 

 

Makes me feel a little better seeing the numbers. They are high but not that much, not uncommon for people with Celiac disease to have liver enzymes 15-20 or so points high when they are loaded up on gluten. The labs were drawn in the afternoon and that morning I ate a couple of donuts and had a couple of gluten packed bars for a snack just before I got the Drs. Office since I wasn't expecting to get my blood drawn. 

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Looked past tests:

Pre gallbladder removal and before testin positive on the tTG IgA test:

01/09/14:

Albumin=4.4

Prtoein= 7.4

Bilirubin= 1.2

Direct= 0.4

Alk Phos=116 (50-136)

ALT= 62 (8-45)

AST= 34 (2-40)

 

Done by two different labs but still not a huge jump.

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