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Question About Enterolab
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7 posts in this topic

I have a question about Enterolab. It's kind of grose, but hey -- on this board we talk about poop enough that everyone is pretty comfortable with the subject.

I have neurological celiac. I have only elevated Antigliadin antibodies. My antitransglutaminase and antiendomysial antibodies were negative, and the biopsy(ies) on my small intestine were negative, as well. My GI even had a GI celiac specialist review the slides himself vs. just taking the pathologist's word for it. He did this mainly because I've had a life-long history of "irritable bowel", "ulcerative colitis" or "spastic colon".

My question is this: I've been gluten-free for almost two years. I do have products which contain casein, have stopped drinking milk because it makes a heinous rash appear on my face, and have tested positive on scratch tests to both milk and casein. My biggest question lies in this: Unless I take Miralax two times a day, I don't poop. At least not on my own. Ever. This is part of the neurological damage.

So -- all that garbage being said, can Enterolab still find antibodies, etc. after I've been off so many things for this long? Also, do they do the testing for genetic markers? My (former!) doctor's office only did bloodwork for HLA-DQ2 & HLA-DQ8 -- and no sub-categories. They didn't have the capacity to do HLA-DQ1, etc. Do you need a physician's order to have these tests run? Are they expensive? Have you been satisfied with the information they have supplied you?

Any help / suggestions you can give me would be greatly appreciated. Even being an "old-timer" with regard to my diagnosis time, I still have tons of questions. Thank you, Lynne

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It would probably be a waste of money to be tested for gluten unless you fear a lot of cc through the months. That said, if you wanted to see what your numbers were then go for it.

They say there test can pick up antibodies for about 1 year after leaving off gluten. Those numbers would obviously be less and less as time went by.

They can do the gene test alone. I think it's $169.00.

I personally like knowing my genes and my family's in relation to celiac. Haven't had the youngest gene tested yet but we know he has at least one known celiac gene as his father has 2.

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Thanks, Andrea. I think I definitely am going to have the gene testing done. I am concerned with possible "glutening" -- my neurological symptoms are progressing, and my doctor would not test the antigliadin antibodies. He said I would ALWAYS have elevated antigliadin antibodies, and if I have been gluten-free, there's no point. My question was: What if I have been glutened from cross-contamination? He just poo-poo'ed that. Can they JUST test those antibodies, or do you have to order a panel??

Thank you so much for your help. If I test positive for the genes, I'm DEFINITELY having my kids tested -- even though they're 21 and 24. Explaining it to my son is going to be interesting . . . .!!!!

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I would call Enterolab and discuss things with them. I had to call them about a year ago regarding having my daughter tested. They were very open and honest and actually discouraged me from testing her since she was so young and had been gluten free for several months. As a matter of fact, I ended up ordering the test anyway for her just to support them. We haven't completed the test, but I was very satisfied with the contact I had with them. It is a bit pricey, but it's probably worth it, especially for your kids, to keep things off of the medical records for insurance purposes.

They offer the casein testing as well as a malabsorption test (to show if you still have damage). Maybe those two things would give you some insight??? I probably wouldn't bother with the genetic testing since you've already been tested for the two readily accepted Celiac genes. Most of the population will have at least one of the gluten intolerance genes so it's pretty safe to assume that you probably have one of them without spending the money on testing.

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I have a question about Enterolab. It's kind of grose, but hey -- on this board we talk about poop enough that everyone is pretty comfortable with the subject.

I have neurological celiac. I have only elevated Antigliadin antibodies. My antitransglutaminase and antiendomysial antibodies were negative, and the biopsy(ies) on my small intestine were negative, as well. My GI even had a GI celiac specialist review the slides himself vs. just taking the pathologist's word for it. He did this mainly because I've had a life-long history of "irritable bowel", "ulcerative colitis" or "spastic colon".

My question is this: I've been gluten-free for almost two years. I do have products which contain casein, have stopped drinking milk because it makes a heinous rash appear on my face, and have tested positive on scratch tests to both milk and casein. My biggest question lies in this: Unless I take Miralax two times a day, I don't poop. At least not on my own. Ever. This is part of the neurological damage.

I am interested in what you said about neurological celiac and not being able to poop. I have never pooped regularly on my own. I first took laxatives as a baby. I now take metamucil (doesn't work as well as benefiber, but it is questionable about the gluten) twice a day and MOM every night. Per my GI's instructions. Being gluten-free hasn't improved the situation. As a matter of fact it may be a little worse. I eat prunes everyday (when I was a child that was my favorite juice. lol.) Other fruit and veggies, too. I wonder if this could be my bowel dysmotility problem? Very interesting! Thanks for sharing that bit of info.

Suzanne

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I have been told by the GI and the neurologist that my inability to poop is DEFINITELY related to the neurological celiac. I have almost no motility without using the Miralax. Before that, I would do the same as you are doing -- LOTS of veggies, at least 12-15 prunes per day, what felt like gallons of water and . . . . . NOTHING. I would end up after 10-12 days having to remove an impaction. Sorry, I told you it was grose.

Even WITH the Miralax, I went to the Neurologist two weeks ago, and she could not hear any peristaltic sounds (bowel sounds). She kept listening and listening, then finally found one spot on my abdomen that had some type of sound. She said that it is definitely related to all of the neurological dysfunction that I have. It makes sense . . . . I didn't start to have that problem until I started with the neurological symptoms --- the stumbling, falling and all the like. Before that? I never knew when I was going to have the big D!!

What I find amazing is that, even though I only tested positive for antigliadin antibodies, since being gluten-free, I haven't had diarrhea once. That's in almost two years. Granted, for two years prior to that I didn't poop, but . . . . . . I also don't remember if I had any bouts of diarrhea during that time. Wish I could remember. It would be really interesting to know.

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""It is a bit pricey, but it's probably worth it, especially for your kids, to keep things off of the medical records for insurance purposes.""

Im curious

Why would it matter if its on the child's record ?

Just asking

sandi

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    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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    • I'm so confused about my daughter's diagnosis.  I hope somebody can help.   My 4 year old daughter has a swollen belly, stomachaches, and lots of gas.  She does not have diarrhea or delayed growth.  Because of her symptoms and because it runs in the family (2nd degree relatives) I had her tested for celiac.   She was weak positive for TTG (IGA)  and strong positive for DGP (IGG)   TTG (IGA)  8   (0-3 neg, 4-10 weak positive, greater than 10 positive) TTG (IGG)  2   EMA: Negative DGP (IGG)  47  (0-19 negative, 20-30 weak positive, greater than 30 positive) Last week, she had her endoscopy.  The doctor found inflammation and little holes or bumps on her duodenum.  He started her on prevacid and said based on his observations, he was suspicious of celiac, but he would not be able to confirm until the biopsy came back. The biopsy showed no signs of celiac disease.  He said that he could not diagnose her with celiac without the biopsy report saying there was celiac damage.  He said he would categorize her as a potential celiac, keep her on a gluten diet and redo the endoscopy in a year or two to check for damage again.  My questions are: 1.)  If it is not celiac, something is causing her duodenum to be inflamed and have little holes or bumps on it, right?  Could it be a wheat allergy or gluten sensitivity?  What else could it be and how do they test for it?  Given her elevated celiac antibodies, how likely is it to be anything besides celiac causing the damage?  2.)  How likely are false positives for TTG and DGP?  I've heard they are pretty sensitive and specific.  Does getting two positives make false positives less likely? 3.) What have you done in this situation?  I want her to have an official diagnosis to make things easier at school and to feel confident that we are eliminating gluten permanently for a worthy reason, etc.  But, I'm having a hard time imagining keeping her on gluten and waiting for her to get more sick and have more intestinal damage just for a diagnosis.     Thanks in advance for your help.  I'm so overwhelmed and confused.  I hope someone has some insight and experience that will help clear things up for me.            
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