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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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licel

Conflicting Bloodwork

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A few months ago I was told by my internist that I tested positive for celiac. I had the blood test re-done last week in a GI specialty group and found out today that I was negative, "well within the norms". Proir to this I had IBS every now and then. I have diarrhea a few times a month, yet, I have a cramping feeling on my right side -- from beltline to lower pubic area every now and then...it sems to come and go and I know when I'm stressed it seems to occur more frequently. I avoid lactose as mucha as possible but will cheat once in a while and there's a 50/50 chance that I get symtoms. I seem to be gassy and my bowel movemnets sometimes seem flattened a bit when I am experiencing that cramping feeling. I was assessed with spastic colon 20 years ago. What should I do about the conflicting blood results? Is it possible that I am sensitive to certain foods or is this a stress related phenomenon. I had a colonoscopy 2 years ago and everything is fine. I turn 49 next month......I have no weight loss and all the other symptoms. Please help and advise.

Thanks!

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Get a copy of your lab results and post them here...someone will be happy to interpret, I'm sure. I would hope that your GI doc knows more about how to interpret celiac labs, but don't be too sure!

Also, do some research on what all the lab tests mean. (see www.celiac.com or

www.clanthompson.com for good reviews on the topic)

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I have some blood results regarding the conflicting bloodwork:

First Dr. found Transglutaminase 8 and Gliadin 28

A second Dr. found Transglutaminase 1.2 and Gliadin 23

The second Dr. said I was negative for celiac and the 1st Dr. said I was positive.

Please offer any help out there. Is it true that different labs use different methods of reference? Any help on these results would be appreciated.

Thanks a million!

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Is it true that different labs use different methods of reference?

Yes, that's true. Normally the Antigliadin (otherwise referred to as AGA) is usually normal < 20. If this were the case for you, then you're positive both times, yet only slightly on the 2nd... but, still positive. Now, there are two types of AGA... IGG & IGA. It might help you to find out which one.

I don't know much about the Ttg levels... sorry!

My AGA Igg level was the first to elevate... then a year later the Iga showed up positive. I believe if you're experiencing symptoms and you've got antibodies showing up, then you're seeing that your body isn't liking gluten too much. PS... in case you're wondering if it's just an allergy, an IGE antibody would show up for that.

Doctors are very protective about the celiac diagnosis, unless they can prove it 100%. In your case, they might say you're gluten intolerant (which I think is just a pre-celiac condition).

Fun stuff huh?

Gretchen

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I'm still confused! After spending considerable time reading these baords it appears that there is "Celiac Disease" and "Wheat Sensitivity or Intolerance". Are they the same. I'm 49 years old, would extensive damage occurred by now? I'm not interesyed in having the invasive endoscopy which one Dr. said is the gold standard. I have read that if biopsies are not taken in the right places the test could be negative when in fact you're positive. I have noticed that some foods cause more symptoms than others (spicy, broccoli, dairy, grainy mustards, nuts, chocolate). I would rate wheat items -- breads, pastas, etc. as being the food items that do NOT bring on symptoms. My bloodwork is in previous postings above and I'm confused as to getting a biopsy, contacting enterolabs, or just dismissing it as IBS as the 2nd Dr. suggested??? The 2nd Dr. said that each lab uses different cutoffs and comparison methods??

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Licel.

My IGA antibody was elevated, biopsy neg, no damage to the villi.

GI doc said he can't prove I don't have Celiac and can't prove I do

have celiac disease. Because my gene test was neg, I think that there are two separate

diseases (in my humble opinion), similar in symptoms, treated by

gluten-free diet. I was really sick for 2 years. I spent last summer in bed,

curled up in a fetal position. This summer I am pain free/symptom free.

Until someone proves different I have gluten sensitivity.

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Thanks for your reply.....

2 years ago I had a calcium oxalate kidney stone. On the enterolab site it said this "could" be related to malabsorption of calcium.???

I'm trying to avoid the invasive endoscopy test. Would my GI Dr. be able to do a gene test? The enterolab site seems to say that the stool test is much better than a blood test.....the more I read, the more confused, and anxious, I become.

The feedback is greatly appeciated....any response to LICEL postings would helppppp!!!

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Licel,

If you are 49 years old I would advise you to have the scope with the

biopsy and also the colonoscopy. They really aren't bad and you will get some answers to your questions.'

Yes, a GI doctor can do the gene test, they have to be sent to a special lab.

Another thing I wanted to tell you is that after my scope was finished my

doctor showed me a picture of another problem, I have Barrett's ring

around the esophagus. It is caused by the acid in the stomach splashing

up into the esophagus and must be checked every year because it can sometime lead to cancer.If I had not had this done i wouldn't have known it. Don't you

think that having the endo would help end the stress your under. When you find out the problem, you can make informed choices on how to treat it. Good luck to you..

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I'm still confused!  After spending considerable time reading these baords it appears that there is "Celiac Disease" and "Wheat Sensitivity or Intolerance".  Are they the same. 

I have read that if biopsies are not taken in the right places the test could be negative when in fact you're positive.

My bloodwork is in previous postings above and I'm confused as to getting a biopsy, contacting enterolabs, or just dismissing it as IBS as the 2nd Dr. suggested???

The 2nd Dr. said that each lab uses different cutoffs and comparison methods??

Licel,

I'll give you the Gretch's dictionary definition on the Celiac vs. Sensitivity/Intolerance. ;) ... but, I don't know if it will help.

Celiac disease & Gluten Intolerance are pretty much the same... however, celiac is where there is evidence (visually by eye and/or microscope) that there is damage to the small intestine due to a protein found in wheat, rye, barley, oats called gliadin. There are supposedly 1 in 133 that have a genetic disposition to not be able to tolerate this protein in their bodies and their immune system launches an attack via antibodies (ie: IGG, IGA). Some of the other tests that your doctor runs, like the Ttg & Ema can also check for immune response and are somehow sensitive to those who have damage.

Those of us without 100% positives any or all of these blood tests and/or haven't shown any damage with a biopsy, are sometimes told by our doctors that we don't have celiac (damage to the intestines due to an autoimmune response to gliadin). Not many tell us that however, that we're still having an immune response to gliadin (gluten intolerance / sensitivity), but we haven't suffered damage... yet. That's why most of us are here.

We're suffering the symptoms of an immune response to gliadin (the same as a celiac), but our condition hasn't fully developed yet. Some doctors don't like to see their patients go on a gluten-free diet unless they're 100% diagnosed. But, many of us don't care... we just want to feel better and be healthy and prevent what we believe would be inevitable (full-blown celiac) if we went untreated.

... and please don't accept IBS... I spoke with my (former) doctor the other day and he wanted to give me that and I have antibodies to gliadin! He admitted that's where doctor's put people that they just don't know what's causing their symptoms.

And yes, different labs have different ranges of normal, etc... but, the lab will usually tell you what they are on the results.

Good luck!

Gretchen

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I received a copy of the results in the mail today from the 2nd Dr. who said I am negative. Can anyone out there help interpret these?? I do plan for a followup visit to talk.

Transglutaminase IgG Abs 1.2 (reference range... less than 6 = negative)

Transglutaminase IgA Abs less than 1.2 (reference range..less than 4 = negative)

Gliadin IGG AB 23.9 (reference range less than 45)

Gliadin IGA AB 28.4 (reference range less than 45)...for both of these tests, the report indicates I am in normal range..asis also the case with the results above.

What about EMA...should that have been tested??

Any help or feedback would be apreciated.

Thanks!!!

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Transglutaminase IgG Abs 1.2 (reference range... less than 6 = negative)

Transglutaminase IgA Abs less than 1.2 (reference range..less than 4 = negative)

Gliadin IGG AB 23.9 (reference range less than 45)

Gliadin IGA AB 28.4 (reference range less than 45)

I am a bit confused by the reference ranges. Usually the range for Gliadin is 20 or 30 depending on the lab. I have never seen it be as high as 45. And I wish they had considered the TTG IgA Abs reference range "less than 4 = negative" for my test. I had a 9 and they said it was negative if less than 20! I guess it is the diefference in labs. Maybe my blood tests would not have been considered negative!

By other labs standards your Gliadin tests would be weak positives.

God bless,

Mariann

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so if my IGA glutaminase is 5 (with <20 negative) and my IGG gliadin is 73 (with >30 strong positive), should i be worried that my IGG was a false positive? isn't that the less reliable of the two? i'm not sure if the seeming sky-highness makes it more absurd or more definitive.

i also had a gliadin IGA at 8 units, but there was NO reference range on the test result for that test. unless it's assumed to fall under the same as the gliadin IGG.

any thoughts?

this test was done two years ago, and i had a neg. biopsy. should i get the bloodwork done again?

luckily i just made an appt with a nutritionist for next week... maybe she'll give me a better answer than "IBS!"

monica

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Monica,

so if my IGA glutaminase is 5 (with <20 negative) and my IGG gliadin is 73 (with >30 strong positive), should i be worried that my IGG was a false positive? isn't that the less reliable of the two? i'm not sure if the seeming sky-highness makes it more absurd or more definitive.

I was told my Igg @ 33 (normal < 20) was a false positive and I believed it. A year later, my Igg has elevated even more and my Iga is now a part of the story. I would have to say to listen to your body... ultimately, you know your body best. Conditions that cause your intestines to be more permeable (leaky gut) can cause your Igg to elevate. It has something to do with those gluten proteins leaking into your bloodstream and irregardless of why they're there... a gluten free diet has still been benefitial to many.

It's always good to get your blood tests re-run and I've already decided to do it regularily (when I visit my doctor).

I myself am joining the ranks of those who don't want to be full-blown celiac before treatment. You won't be alone if that's what you decide :)

Gretchen

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Going for biopsy tomorrow. I understand several biopsies will be taken. Will I get the results right after the test or sometime that day? Does the Dr. ead the slides of the biopsies or does the pathologist? Both? The test is being done in a hospital under general anesthesia. I'm anxious!!!! I hope all is well and other problems aren't found... Dr. predicts biopsies will be negative and I have IBS based on bloodwork as previously posted. We'll see.....

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Just a note for people out there to people who may have put off the biopsy like myself. The test was easy and I shouldn't have put myself through all the anxiety. I had it done in a hospital. You are put to sleep and you don't feel anything during or after. I hope the biopsy rules out celiac. Is it possible that celiac can develop later even if the biopsy of the villi is negative? I understand the pathologist reads the slides and scores the biopsies??

My gastro Dr. also recommended a pelvic catscan with contrast dye to rule out other issues including possibly even a hernia. I do get a cramping feeling and he still believes it's IBS. He advised/prescribed Librax until results are in. (PS another Dr. prescribed this and I found it helped, but this whole proces started with those initial blood tests)

My advice to all -- have the tests and avoid the worry! Peace of Mind is worth a million bucks. This board has helped tremendously.

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Is it possible that celiac can develop later even if the biopsy of the villi is negative?

YES! It is possible, especially if you are having obvious reactions to gluten.

I'm glad the endoscopy went well for you. :)

God bless,

Mariann

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As indicated....I had the biopsy completed (since my bloodwork was conflicting) in a hospiatal setting on the day after my birthday. The next day, I had a complete abdominal catscan (drinking barium solution with contrast solution pumped in intravenously during test).

GREAT NEWS!!!

All tests were negative. Stress and lactose intolerance seem to be the problem which results in spastic colon during these times. I also have some trigger foods and wheat prodicts seem to be ok.

MY ADVICE TO ALL......HAVE THE BLOODTESTS AND ENDOSCOPY DONE TO PUT ALL FEARS TO REST. I will use some gluten free foods since I was researching and trying different foods just in case.

Keep this message board going...It was a great help!!!

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    • Yeah, I think this is the answer here. I've essentially adopted a paleo diet to see if that works. Fingers crossed. Thanks to all for your responses.
    • I took two "health4all" psyllium husk 550mg and I had a bad reaction. I took them with a lot of water, before food. Didn't eat anything I haven't eaten before so my reaction can't come from the food.
    • Thank you for the advice! I'm so sorry that you had to deal with that. It makes me feel less alone to read peoples' medical horror stories online, but I hate to think of the potentially millions of people who are suffering because of the shortsighted egomania of doctors. You're right that I need to play dumb - I realized years ago that doctors take it as a personal affront if a patient doesn't infantalize himself. Still, I get the distinct impression that these golfing yuppies are just offended by the idea that a lowly peasant could possibly know something that they don't. That attitude would be bad enough, but peoples' lives are literally being destroyed by it. Sometimes I get so frustrated and angry that I'd rather just continue rotting away from the inside out than subject myself to that smug condescension any longer. Even before my issues with my gastro disease, I had similar experiences with other health problems. I had necrotizing strep I'd been carrying for more than half a year, and exactly two weeks before I ended up hospitalized with a collapsed lung, an ER doctor told me I was suffering from  "allergies." When I brought this up with the doctors in the hospital, they insisted that I must have developed pneumonia in the two weeks between the initial ER visit and my hospitalization. Yeah, sure - in two weeks my lungs abruptly developed abscesses and filled up with sacs of pus and blood. After my lung surgery, I spent the next four months coughing up fluid until I gagged. My family literally begged me to return to the doctor, which I was hesitant to do because I still didn't have insurance. The E.R. doctor told me matter-of-factly that "strep can't cause pneumonia", and when I lifted up my shirt and showed him the scars from the lobectomy, he just stared, said nothing, and then changed the subject. Keep in mind, this is the exact same hospital where the surgery had been done several months prior. As I was leaving, I heard the doctor who'd seen me talking to the nurses - "Well, if he doesn't trust the staff's expertise, then I don't know what to TELL him...". I wasn't even being difficult or forceful - the issue seemed to be that I had the audacity to politely disagree with the all-knowing doctor. I know I'm only hurting myself if I spend every day getting violent diarrhea with full-body inflammation, but part of me wants to bail altogether. The frustration of dealing with these doctors makes me feel like I'm losing my mind. I feel like I have to grit my teeth and politely agree when people are condescendingly lecturing me that the sky is green. At a certain point, when everyone around me is telling me to doubt my own perception, I can't help but let serious self-doubt seep into my psyche. It's so frustrating. I won't even hedge my words anymore - I legitimately hate doctors now. These are the same types who would've snickered at anyone who disagreed with lobotomies back in the 50s or 60s.
    • I mean I may come back negative because I was gluten free for a week? 
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