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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 Celiac.com's FREE weekly eNewsletter   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

Enterolab Results
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Hi everyone,

I just got my results from Enterolab and I am so confused! My IgA results are just above the normal range, but I do not have malabsorbtion (see results below). This is surprising to me because I've had a lot of hair loss and an iron deficiency. Could these problems still be caused by celiac or should I keep looking for something else that's causing them? I guess it could be because I have been on and off of a gluten-free diet for the past few years. (I know now that that's not the way to do it!) I am also wondering about the gene tests. They said that I have the gene for celiac sprue (*0201 or DQ2) but what does the second number *0303 represent? Does everyone have two numbers? Also I thought for sure I was sensitive to milk...I always get a stuffy nose and water retention and gas after eating it but according to the test I'm not. But does a value of 8 mean that I could be having some sort of immune reaction? Should I have other food sensitivity tests done to see if it's something else? Thanks in advance! Kallie

Fecal Antigliadin IgA 12 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10

Units)

Microscopic Fecal Fat Score: 180 Units (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0201, 0303

Food Sensitivity Testing

Fecal anti-casein (cow's milk) IgA antibody 8 Units (Normal

Range

<10 Units)

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When I tested with Enterolab I was taking a daily digestive enzyme to counteract malabsorption. My Elab results also were low in malabsorption, although I had lifelong malabsorption symptoms. My lab test result was:

Stool Test for Small Intestinal Malabsorption

Microscopic Fecal Fat Score: 132 Units (Normal Range < 300 Units)

When I asked Dr. Fine at Enterolab whether taking those enzymes may have affected my test results, he said that taking digesting enzymes could very well have skewed my test results.

I also had milk sensitivity, but thought I was just lactose intolerant. So I had used 'lactaid' tablets and lactaid (lactose free) products before I did the Elab tests. Nevertheless my milk antibody results were positive enough to indicate a casein (milk protein vs. milk sugar of lactose) intolerance:

Stool Test for Milk Sensitivity

Fecal anti-casein IgA antibody 12 Units (Normal Range <10 Units)

I'm not sure what may have skewed your milk test result. Were you actively consuming milk at the time of the test? Was that regular or lactose free milk?

You might consider how much milk you were consuming, whether you were using probiotics or digestive enzymes at the time of your Elab tests. I know those factors influenced my test results.

BURDEE

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I wasn't taking any enzymes, but I was taking lots of vitamins and herbal supplements so maybe they might have skewed it. Also I was wondering if taking an antihistamine may have skewed it?

Thanks,

K

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Kallie,

I was just as confused when I got my results...to tell you the truth I'm still not really sure what it all means. A doctor I saw last week told me that malabsorption can change often from one day to the next. I asked about this cuz when my HMO tested me (a few months back) they said it was normal but Enterolab scored me at 912 :o Thats a big difference so I was confused. I suppose she could be right based on my own observations that when I'm feeling particularly bad for several days I usually notice a change in my stools. They tend to be floating, light in color and undigested food is visible (this coincides w/ weightloss) whereas maybe a week or two later I'll be feeling better and my stools are normal and healthy looking. I'm asuming this indicates a change in absorption?? When I took my Enterolab test I was NOT feeling well at all. Do you ever notice these changes in stool? Were you gluten-free and feeling good at the time of testing? If so you're absorption could have improved but I doubt hairloss or other symptoms would improve that quickly. I don't know if taking vitamins could have skewed results....not too sure on that one. Also if you *know* that dairy makes you feel bad I'd stay away regardless of what the test says.

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This thread raises some questions I'm still trying to resolve.

I tested with Enterolab:

Fecal antigliadin IgA: 17

Fecal Antitissue Transglutaminase IgA: 17

Fecal Fat: 84

HLA-DQ Gene: HLA-DQB1*0602,0602

First, as I understand their gene testing report, the two 4 digit numbers after the * represent your two versions of the HLA-DQ gene (one from each parent). The HLA-DQ gene is one gene that has been corelated to gluten problems - there may be others not yet recognized. In my case the double 0602 means both my inherited HLA-DQ genes make me subject to gluten sensitivity but not to celiac disease.

Regarding the Enterolab malabsorption test, I'm still skeptical about it's validity. [i do wish they would publish their testing details so they could be verified or disproved by their peers - standard scientific practice and very powerful.] I was diagnosed with osteophorosis 5 yrs ago (male at 55 yrs old) after my older brother was similarly dx'ed and subsequently one of his sons showing a strong genetic connection. I also have been marginally anemic all my life. Both would correlate with malabsorption or maybe some other effect that blocks the metabolism of some nutrients. The Enterolab Antitissue Transglutaminase would also indicate that the intestine is being attacked and possibly damaged; therefore possibly leading to my osteo and anemia. (Without the celiac disease gene I'm not sure what this Ttg test is telling me.) The Enterolab results do not indicate any malabsorption; hence, I'm suspicious of their malabsorption test. I too notice that some days stools floot and somedays they don't so wouldn't be surprised if their one shot test might not be completely representative.

My overt symptoms of bloat, gas, and constipation disappreared within 24-48 hrs of going gluten-free and return within the same time frame when I ingest gluten, so obviously I'm gluten sensitive.

Still searching for a complete understanding of all this.

Hope this helps in some way.

George

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The Enterolab Antitissue Transglutaminase would also indicate that the intestine is being attacked and possibly damaged; therefore possibly leading to my osteo and anemia.  (Without the celiac disease gene I'm not sure what this Ttg test is telling me.)

<{POST_SNAPBACK}>

I'm still wondering about this myself. The tTg is suppossed to be specific only for celiac disease. Why do Enterolab results show elevated tTg in so many of us w/out those main genes. It doesn't make sense to me. I've read everything there is to read regarding Enterolab's tests and maybe I'm missing it but nowhere do I find an explanation for this.

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Rachel,

I specifically asked Enterolabs about the positive aTG result given that I don't have a celiac disease gene. Here is their response:

"

In reading Dr. Fine's research, you will find that the anti-tissue

transglutaminase is actually a reaction to gluten sensitivity and not

specific to celiac disease alone. For years this test has been used as THE

marker for celiac disease along with the genes and malabsorption, but

research has found that one could have a genetic predisposition to any

autoimmune disease for this test result to become elevated when you are

gluten sensitive. What this really means is there is an autoimmune reaction

taking place that may not necessarily be celiac related. This accounts for

the wide range of symptoms that people say improve on a gluten-free diet,

some of which you would never think to encounter with gluten sensitivity

alone. You may want to read the section on our web site entitled "Freqently

Asked Questions" and specifically the "Who should be screened?" section. It

might provide you with a bit more insight into this logic.

"

I didn't find this very helpful. I hope maybe someone else can shed some light on this issue.

At least I know there are two of us in the same boat. If you get any answers elsewhere, please post them here. Thanks.

George

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So...are they saying that an elevated tTg can be caused by *any* autoimmune disease or is it specific to gluten sensitivity only? I don't get it :blink: . What is the point of the test then? I already know I have autoimmune stuff going on since I had Graves disease...are they saying this can cause an elevated tTg? Their response just has me more confused.

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tTG is not specific for gluten sensitivity it is specific for damage in the intestines. This is the best blood test for celiac and is taking the place of biopsies at least in kids for diagnosis in the very near future.

If detected that means there is damage...people without celiac genes can still get damage. I think someone with gluten intolerance without the genes that does not follow the diet will eventually turn into a celiac(even without the gene) thats just my opinion-there has been debate over it.

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tTG is not specific for gluten sensitivity it is specific for damage in the intestines. This is the best blood test for celiac and is taking the place of biopsies at least in kids for diagnosis in the very near future.

If detected that means there is damage...people without celiac genes can still get damage. I think someone with gluten intolerance without the genes that does not follow the diet will eventually turn into a celiac(even without the gene) thats just my opinion-there has been debate over it.

<{POST_SNAPBACK}>

Do some Celiacs show up positive in the bloodtest (tTg) and still have no malabsorption or detectable damage to the intestines? I'm noticing that with Enterolab many people come back with positive IgA and tTg but with no malabsorption...I on the other hand had a high malabsorption rate but my IgA and tTg weren't off the charts or anything. Do the numbers matter when it comes to malabsorption? Can it differ in each individual or can something else really be the cause of my malabsorption. Just wondering why mine is so bad compared to others.

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If there is minimal intestinal damage then it is possible there is not malabsorption yet because the rest of the intestines are compensating for the damaged part.

The tTG is specific for damage(even in small amounts) that a biopsy may not detect.

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Yes, I wondering too about the malabsorbtion thing. I'm sure it must vary from day to day. And also, their test test for the malabsorption of fat, correct? So what is the correlation between absorption of fat and minerals? I would think that it might be harder for your body to absorb certain minerals than fats...but I really have no idea.

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...I on the other hand had a high malabsorption rate but my IgA and tTg weren't off the charts or anything. Do the numbers matter when it comes to malabsorption? Can it differ in each individual or can something else really be the cause of my malabsorption. Just wondering why mine is so bad compared to others.

<{POST_SNAPBACK}>

Rachel I believe that if the IGA and tTg numbers are ANYWHERE above the normal range, it means you are gluten intolerant and need to eliminate gluten from your diet for the reast of your life. In the words of Dr. Fine, " Its like being pregnant... you either are pregnant or you are not there is no inbetween " He goes on to state that those two numbers are not indicators of severity. Only the malabsorbtion number indicates the severity of damage.

This is true even if you do not posess the celiac genes. Those IgA ans tTg numbers mean that you are gluten intolerant. The gluten intolerance is most likely to be the source of your malabsorbtion.

If while on a gluten free diet you and your kids are still getting sick, look for hidden sources of gluten. I have found it nearly impossible to eat gluten free without buying all whole foods and preparing them myself. THe only exception to that rule is prepackaged foods that are labeled " gluten free ". Good luck !

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Drew,

Thanks for your response. I did read everything Dr. Fine has said but for whatever reason I have days where I start questioning these results and doubting that gluten is the root of my problems. Not that I would think of actually eating it again...I just never realized that an "intolerance" to anything could cause so much damage. As stupid as this sounds (and it sounds *really* stupid) I think it would make more sense to me if it were called something other than intolerance because that just seems less "real" to me for some reason. :blink:

OK...I know...definately not one of the brightest things I've ever said...but this is just what goes through my mind occasionally as I'm having the ups and downs of trying to get this diet right.

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Rachel - I go through the doubt part a lot, even at this point (nearly 11 months gluten-free). Or even about other foods I have problems with. I think it goes in waves, as I accept it. I'll have bad moments and doubting moments, then I'll get glutened or react to something and it will nail it home. I'll even think there's no way I could ever doubt this again, and then a month or so later, I'm a doubter... But a little less every time, honestly. It gets to be second nature at some point.

Like last night we went to a restaurant and I had the sautéd veggies which I was assured had no bell peppers in them (or tomatoes) and when they came out I saw two red bell pepper strips hidden. My husband didn't order food (we were at a brewery with a bunch of friends who were drinking beer) and so I said he could just have the veggies, thankfully the steak had come out fine. But I kept thinking maybe I could still eat them, why not try it? Well, that would have been a really bad idea but it's been a while since I've tempted fate - and I know even smelling peppers cooking has made me sick before.

I was a little disgruntled about the mixup but decided not to make waves, and then the waitress came out at the end of the meal to apologize - she just found out this *one* night they'd tossed bell pepper in, she was really sorry, etc. I told her no problem, I'd caught that and my husband ate them instead. But I was really happy she'd bothered to fess up about them without my prompting. This is one of the few restaurants that has really done their best to accomodate me so I won't hold it against them, but certainly was a surprise she bothered to inform me.

Stephanie - who somehow avoided giving in to temptation!

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