Celiac Disease Screening

I was diagnosed with Multiple Sclerosis in 1993 and I'm a R.N. who became disabled unable to continue working and I was put on SSDI. I got divorced and then re-married in 2001. My step-son HAS AUTISM and my husband is diagnosed with ADD. So I read Dr. Shari Lieberman's book and I decided to start my family on a Diary Free and a GLUTEN-Free Diet. I was a Dietian Major before. I was a Nursing Major in College. So I have had this interest in diets and how they affects us. So we have taken out dairy products already. So just need to add Gluten to things to remove from our diet. Ive removed sugar and chocolate already because of it's affect it had on me. Thank You for your time. I'm always open for suggestions.

I was just diagnosed via a stool sample. I was told that blood tests can result in false negatives, where the stool test isn't accurate.

Did you say the stool test is or isn't accurate. We just ordered the test kit for $394 for Enterolabs and would like to know if this is a valid method of testing.

My daughter had the blood test and tested negative. She did have a gene for celiac sprue and one for gluten sensitivity on DNA testing. On stool testing, she was found sensitive to wheat. She then had a food panel done, but had been on a gluten free diet for two months and again tested negative for a wheat allergy. I am getting confused on what constitutes a "good" test for this condition.

This is true. In order to produce antibodies against a substance (or have high enough antibodies circulating to result in a positive test) the antigen must be present. In the case of celiac disease, the antigen is gluten. DO NOT go on a gluten-free diet prior to testing.

This is still a confusing subject, because the anecdotal evidence is not in line with the "research".

This is a good post. Thanks for sharing.

Very informative

Mt daughter just had a scope done and she had a lot of lymphoid nodules and was just curious if this also was a sign of celiac? They took biopsy's of it but I just wondered if other people had this problem when they had a scope done!

What do I do? Go gluten free now? Before I have tests done, which test do I have the doctor do? I don't want to end up in the ER with abdominal pain again.

Information I've been looking for. And my daughter had this website 2 years ago. It was nice to be able to give her the site she lost and a website I and my husband will use.

Butterfly,
I hope you find this answer helpful even though I'm not to the point of considering TPN. Is she vomiting a lot? I ask because I was only diagnosed with celiac disease 3 days ago after a week long hospital stay in which I kept a total of 3 meals down. But I have been suffering from the vomiting, diarrhea, debilitating abd and back pain and other related symptoms for years with the doctors telling me it was a virus, that I had severe IBS and a lot of other crap that I'm beginning to believe is common to people suffering with this disease and you come to the point that the frustration that no one will really help you, the depression that this is, apparently, your life from now on and the way you can see that frustration and depression affecting your family and you just become consumed by the frustration and depression and nothing really matters but making the pain and the vomiting stop.

Was she been diagnosed recently? I ask because I was thrilled to be diagnosed, sure that a few IV's and follow up pills would cure me or at least give me enough relief that I could return to my former life. I was once again in charge of my own life, that I, with enough research, planning and sheer strength of will could kick this diseases' butt. But my bubble was certainly popped when the dietician arrived to explain the disease to me in a way the doctor hadn't bothered to (the big coward). I felt that control slipping a little but my determation didn't waver. So, I got on the internet and the remainder of that control was not taken away so much as buried under the bombardment of conflicting information that left me reeling in confusion.

And that wasn't even the worst part. The worst part was that most of my beloved foods (hot yeast rolls smeared with honey butter, bread pudding with caramel whiskey sauce, birthday cake with whipped icing, ok going to stop now because typing this is just making me angry and very, very hungry:) My point is that knowing you have to change the eating habits of a lifetime (and yeah, I know the above aren't really healthy choices but they are definitely yummy;) and knowing that these changes have to be permanent, that your very life may depend on it is sort of overwhelmingly terrifying. And having too many things that you absolutely love in your diet taken away is pretty darn depressing, especially when the people taking it away smile, practically pat you on the head and tell you that you will be MUCH BETTER OFF, health wise with this diet than your own eating habits.

Right now, I'm just so completely overwhelmed with the conflicting opinions (medical and otherwise) that I'm almost afraid to eat anything. I mean a product that has wheat, barley or rye in it can get around the labeling law by simply listing this as malt flavoring and you just don't know if it is safe or not without contacting the manufacturer of that product. Seriously? Knowing that I would have to be reading labels for the rest of my life didn't exactly fill me with joy but knowing those labels might be misleading and I will have to be, basically, researching my food before it can pass my lips kind of makes me want to pull my hair out in frustration but, hey, maybe that's just me:)

So far I've used my admittedly fledgeling experience to let you know how the process of being diagnosed has affected me and, I'm guessing, to a degree, a large portion of celiac patients. Now, I'm going to give you some advice as an RN with 20+ years of experience. A weight of 68 pounds is significant, especially if she is eating much at all. I don't know what time frame this weight loss occurred so I couldn't hazard a guess as to whether it is completely Celiac related or if depression is playing a part in it. What I can tell you with utter certainty is that this is a trend you should be concerned about and if your doctor has discussed TPN with you then he, too, considers it a problem. I guess, it all boils down to do you trust your doctor or not? If you do, then know, that this is a recommendation I wouldn't expect him to make lightly if he saw an alternative. If you don't trust him then I can see you doubting the validity of TPN and I would strongly recommend that you find one you can trust because this is a lifelong illness and the more people you have in your corner the easier it will be.

I know this was a rather long winded reply but I hope it makes you smile even if it isn't all that helpful.

This is outdated. It doesn't talk about the newer deamidated gliadin peptide (DGP) antibody test. Things are changing rapidly, please update. Also, I would suggest more details like a table of what results of various tests mean in terms of interpretation, and also ideally info on when you need to get an endoscopy/biopsy and when you don't. Thank you!