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jitters

Enterolab Results

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Okay, my mom has Celiac disease. I've been off and on gluten free for about five years now. Long enough to know that I definitely have a problem with gluten. I have all the classic symptoms from intestinal to physical to neurological. Long story short I thought I was noticing some signs in my daughter that could be gluten related so we decided to test through Enterolab, we chose Enterolab because it is nonevasive. Here are our results:

Hubby- 45

Daughter- 30

Me- 8

Normal is less than 10 so I am in the normal range. Funny thing is I"M THE ONLY ONE IN MY FAMILY WHO HAS OBVIOUS PROBLEMS WITH GLUTEN!! I have DH and everything. So now I look like a total hypochondriac. Yes, I could be that lucky 1 in 500 people that doesn't make the antibodies but try telling that to people who already think I'm crazy. I'm sure they'll believe me then...

Anyway, I know a lot of people are curious about Enterolab and like to see the results others get so I hope this helps out in some way.

Jitters

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If you've been gluten free on and off for 5 years it's going to skew the results. I wouldn't be mad. Enterolab says that the test is accurate if you've been off gluten for up to a year. You probably just don't have enough antibodies, although you are at the high end of "normal".

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I would agree with the others. You wouldn't get accurate results if you've been off of gluten most of the time in that 5 years.

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Just another voice saying the same thing. In addition the positive numbers do not always corelate to the degree of illness. Someone who shows only a 1 point positive may be sicker than someone who shows a 40. Different people have different systems effected, some are much more obvious like the tummy problems but for example with the neuro issues folks may not realize how severely they are impacted until they are gluten-free. My DS and DH both thought they were symptom free for the most part, until they went gluten-free and felt the difference.

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Just another voice saying the same thing. In addition the positive numbers do not always corelate to the degree of illness. Someone who shows only a 1 point positive may be sicker than someone who shows a 40. Different people have different systems effected, some are much more obvious like the tummy problems but for example with the neuro issues folks may not realize how severely they are impacted until they are gluten-free. My DS and DH both thought they were symptom free for the most part, until they went gluten-free and felt the difference.

Have to add my agreement to this. I tested positive with only an 11 and yet I react severly to gluten with mostly neuro. symptoms. I didn't have any idea how much my gut was affected until I went off of it. The NP kept asking me if my stomach hurt and I kept telling her no. I had gotten so used to it that for me it was "normal". Now that I'm better I'm amazed at how much my stomach hurts if I accidentally get even trace amounts of gluten and I have no idea how I tuned that out for so long!

My numbers were so low and there seemed to be a trend in our family towards that with Enterolab testing so I had my IGA tested and it turns out that I do have low IGA so that explains my low number. My mother tested negative with a 9, but I talked with Enterolab and they recommend that you still do the diet and see if there is an improvement and if you do then you need to be on the diet regardless of the number. Basically, they had to make a cutoff, but it's not perfect for everyone. I understand the frustration with the negative number, but dietary response really is the true test.

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Same here. I only got an 10 for gluten antibodies, but I know that I'm not just being a hypochondriac about the gluten. I've been slowly but surely avoiding bread and other "junk foods" for years because they just didn't seem to make me feel good. I didn't know about celiac, so I thought I was just having "food coma" from too much starches. Rarely I would have a sandwich but mostly I was only getting the hidden gluten in certain foods I was still eating.

Now that I've been gluten free a piece of bread would half kill me-- I've felt it.

I'm considering having my IgA checked because of it, and I understand your frustration, Jitters. I would rather have it clear in black and white than be wondering. And with my family I could be the world's most famous celiac doctor to the family reunion and have him swear on the bible that I had celiac and my family would still think I was just trying a fad diet. They only believe in medical conditions they have heard of before and cures that come in pills.

Stay gluten free for your family and keep looking for answers as long as you feel you still need them! We're here for support.

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I've had gluten off and on for the past five years. The longest I've been totally gluten free is probably 6 months. Other than that I've cheated now and then probably at least once a week just from not being picky in restaurants.

I guess my frustration isn't with Enterolab, its only because I was looking forward to telling the critics that I was tested and it came out higher than normal. Now, I have to tell those people that I was on the higher end of normal, but that maybe, just maybe, I have a low IGA count anyway. I can see the eyes rolling now. I also went on gluten for a month straight before I took the test and can say with certainty that I never want to do that again. The food tasted awful no matter how good it smelled, and I was so sick by the end of it I just "knew" my levels were going to be high. So it was just a surprise they weren't. I was just a little disappointed it didn't come out positive, as silly as that sounds. Of course my husband is even more convinced Enterolab is not reliable and thus his positive test is probably not right either and won't be going gluten free any time soon.

My frustration level was high when I got the results, but now I just have to deal with it and move on. I'm going to stick to my guns and stay gluten free.

Thanks for all the positive answers,

Jitters.

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I guess my frustration isn't with Enterolab, its only because I was looking forward to telling the critics that I was tested and it came out higher than normal. Now, I have to tell those people that I was on the higher end of normal, but that maybe, just maybe, I have a low IGA count anyway. I can see the eyes rolling now.

I can definitely understand this. I did gene testing because I'd been gluten free for so long and wasn't going back on gluten for anything. I was sure that I'd have 2 copies of the Celiac gene and that I'd be able to tell my skeptical family, "See - here's absolute proof". But wouldn't you know it, I don't have either of the Celiac genes - just every symptom and a miraculous recovery going off gluten. I guess you just have to get to the point where you know what you have to do to take care of your own body and then stick to your guns.

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If you are IgA deficient, it doesnt matter if you are eating gluten or not...you have a higher chance of NOT testing positive. I am IgA deficient also.

Enterolab tests for:

Fecal Antigliadin IgA

Fecal Antitissue Transglutaminase IgA

Taken from Columbia University's Celiac page:http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C05-Testing.htm

Selective IgA deficiency (SIgA deficiency)

SIgA deficiency occurs 10 to 15 times more commonly among people with celiac disease compared to the general population [19]. Patients with SIgA deficiency will lack IgA antibodies including endomysial antibody, tTG and IgA AGA. To detect celiac disease in patients with SIgA deficiency an IgG antibody, typically IgG AGA, needs to be performed together with total IgA level. Alternatively, one may screen with IgG anti- EMA or IgG anti-tTG, though these are not widely available. Typically the patient with celiac disease and SIgA deficiency will have a positive IgG AGA and absent total IgA level. This combination should prompt a biopsy, whereas an isolated positive IgG AGA would usually not.

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i have a son who is IgA deficient. he didn't just test low---his levels are almost non-existent. i think that there is a definite difference between being IgA deficient and having low IgA levels. since enterolab does not test IgA serum levels and dr. fine goes on and on saying he is going to publish---without ever publishing---i think you would be far better off having blood work done through a reputable lab if you want family members to believe you. it may just be easiest to not discuss your diet with them.

our ped gi tells me it does NOT take much gluten to raise Ttg levels in a celiac. my daughter went into the hospital with Ttg levels nearly normal. after 3 months of the hospitals "gluten free food", she came out with her Ttg levels over 100. i really think that if you have been having symptoms for 5 years and been getting gluten approx once a week and your levels are still in the normal range that you probably do not have celiac disease. that does not mean that you do not have a problem with gluten, just that you don't have any evidence to show your family.

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