Celiac.com Sponsor (A1):

Celiac.com Sponsor (A1-m):


Advanced Members
  • Content Count

  • Joined

  • Last visited

  1. Scully,

    I agree with Rachel. If your biopsy came back negative, your blood work almost certainly would come back negative. Even if it came back positive, does it change your decisions?

    Which leads me to a bigger issue which is touched upon here...we only have a small view of the big picture of celiac disease. There may be more genes involved that have yet to be discovered. Enterolab may finally prove to be cutting edge and the leader in antibody testing with other labs following suit. There is still much to be learned.

    Trust your gut...literally. If you feel better, go with the diet. Who cares whether your doctor believes you or not. It doesn't matter whether you have "the genes" or not. It doesn't matter whether you are "sensitive" or "celiac". The result of the diet is that you feel better. You, yourself, know what is best for you. Trust your gut.

    I've found that I've had to blaze a trail with this disease. My family, friends, doctors have not known a thing and I've had to do the teaching...I've spent days researching and I can't say my doctor has done the same. Sometimes the patient knows more. Sometimes trusting experience is wiser than trusting knowledge, especially when that knowledge is contained in a very narrow box.

    Blessings to you!

    Rolling Along - Tx! for the link to glutensensitivity.net. What a great site, and I love the "7 viewpoints" chart they have...it gives such a clear understanding of where the medical community stands on celiac issues.

  2. Has anyone tested with enterolab and gotten results saying that they tolerate gluten? Just wondering. also, it also showed that they all have positive anti-casein antibodies. I guess I am also wondering about the validity of enterolabs testing does anyone have any positive feedback, like dr's accepting it, or any negative?

    There are five in our family and we tested my husband and son first as they were most suspect of the disease. Because they both came back positive for both DQ2 genes, we all got tested. Lo and behold, I was surprised that I have a main gene and sub-gene and so does my son. We both tested positive. My daughter, the youngest, tested for both DQ2 genes but came back negative...so far. I just ordered her yearly test, so we'll see if that's still the case.

    As far as the drs, our allergy doc had never heard of Enterolab so we did some educating. Our pediatrician and GI looked at the results I emailed him from E-lab, and they accept the results.

  3. www.enterolab.com

    You'll find this lab periodically mentioned on this site, but it is unknown to much of the medical community. It is a non-invasive test. Order the test online ($375 or so for full test), they send you the packaging for it, for a toddler you dump a couple diapers in a bucket, and then you overnight it back to the lab. Results in 2 weeks or less. It's AWESOME. Our whole family (5) did this in Feb/Mar 2007 and our lives are SSOOOO improved because of it. Best money we ever spent...and it was so easy. We highly recommend them to everyone.

    God bless and stay tuned here as there is a lot of info shared.

  4. I've been wanting to ask this same question. Our family's test results were antibody levels of (normal is under 10): Dad 290, Mom 17, Child #1 is 42, Child #2 is 26, Child #3 is 8. Because these were the stool tests through Enterolab, we don't have positive blood or biopsies. So what are we? And what about others with full blown celiac who get their antibodies down to normal...does that mean they are then gluten sensitive? This is such a confusing issue for me. In the end, we're on the diet for life. Should I just say we have celiac?

  5. When Christ was breaking bread with the disciples, he didn't say, "Take this bread -which must have gluten in it- and eat." This rule comes from the political realm of the Catholic church, and it could potentially change with a change in papacy. Whether or not you have a gluten free host depends on your individual priest who may be Christ-like and want you to participate in the part of the mass which sets Catholics apart from other denominations or may be like the chief priests and scribes who put Christ to death because they didn't like that Christ didn't follow the letter of the law that they had set down.

    Can you tell I'm a renegade Catholic?

    Our priest is very down to earth and has no problem with the Ener-G gluten free hosts. However, I know from others in the community that the other three priests in the area would not go for it because they are such sticklers for the rules.

    Good luck!!!! This is a tough decision to have to deal with.