Question About Enterolab

[tiredofdoctors]

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

[AndreaB]

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.

[tiredofdoctors]

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 . . . .!!!!

[Guhlia]

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.

[SUZ42]

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

[tiredofdoctors]

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.

[Sandi]

""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