The verdict is in....CS it is!

[Rome]

I called the doc today to get the results, and the first thing she asks is "How is the GF diet working for you?" I know I haven't posted in a while, so I guess I should first say that since I went GF I have not had any cramping, or urgent need to find a bathroom The number of times I have a BM has decreased significantly. I still have the loose D stools, but not as much (quantity wise). I think my body is trying to figure itself out. Yesterday though, I did have a set back, and am not sure what it was that triggered it.

Now, back to the doc. Anyway, she said that the biopsy was "not clear cut", there were areas affected, but that with the positive blood tests and the fact that my body is responding to the GF diet, I have Celiac Sprue. I told her of the enterolab results which confirm what she is telling me, and about the gene test results. I asked what she thought about getting my girls tested. She said she had never been asked that before (she is a young doctor), but said that she is going to refer me to a geneticist, to see about the gene testing and see if the girls are high risk. She told me that kids present differently that adults, so it is possible that they may need to be tested. I told her my concerns about my oldest daughter, and she agreed that it would be a good to catch it early if possible. So I will be setting up an appointment soon. I will follow up with my GI in August. She said if I am not 100% by then, we will look at other options.

I am glad that I finally have some answers. I just wish I would have done this sooner!!!!

Til next time!

Rome

[barbaranoela]

A bit late but to our family----and happy to hear that U are beginning to feel better~~~

Whats the old Xpression---better late than never~~~~~

I tend to put things off -which I always promise myself NOT to---but--

I am one of the OLDBEES---and have always found answers to things I didnt even know were happening/or could happen~~~~

Best wishes on getting better and better!!!!

Barbara

[mbeezie]

Rome,

Glad you have a diagnosis finally, but sorry you have CS. But at least you know what to do and are starting to feel better.

You really don't need a genetecist (she must be young and inexperienced). There's clearly published data on risk. You could do the genetic testing yourself through Enterolab ($99 and it's just a cheek swab). Once you know their genetic pattern you can determine their risk. Not long ago Tex posted that info. If they are at risk and have any symptoms you could get a blood antobody test. If it is negative you could do Enterolab stool testing as it seems to pick up disease earlier than blood testing. The children's pediatrician should be able to do all of this without a specialist.

Take care,

Mary Beth

[Joefnh]

What is CS? Sorry I am fairly new to this and I was just diagnosed with Crohns and CC.

--Joe

[mbeezie]

Celiac Sprue, aka Celiac Disease

[tex]

Romanita,

It's good to have the facts in hand, isn't it. Unless soy, (or something else), turns out to be a problem, you should be able to achieve stable remission in a few more weeks or so.

Apparently, Dr. Fine's comments about high anti-gliadin antibody levels in stool samples, being associated with celiac disease, are right on the money.

Thanks for the update.

Tex

[Rome]

Mary Beth, I did the genetic testing through Enterolab, and have a celiac gene and a non-celiac gluten sensitivity gene. If I am right, that means that both of my girls will each have one of these genes. I mentioned this to the pediatrician at my daughters recent physical, but he didn't seem to worried about it. I know I don't need to go to a geneticist, but if it will get the ball rolling in the right direction, then I will do it. My sister is having some of the same issues and has just recently (last week) started going to a doctor to figure it out. She told him all about me and the testing, so he is going to start with allergy testing and go from there.

Rome

[tex]

Most doctors don't recognize a non-celiac gluten-sensitive gene as meaningful, so the pediatrician assumed that your daughters each have a 50-50 chance of inheriting a celiac gene from you, and she/he almost surely completely discounted the other gene.

Tex

[mbeezie]

Rome,

. . . . and you don't know what gene their father will contribute. When I had my son tested I was shocked that he gave him a DQ2 celiac gene because I was the one that was sick. So, depending on the combination of DQ2 and DQ8 you can determine the risk.

As for pediatricians, when I told mine my son had a DQ2 gene she said he was safe because he needed 2 celiac genes . . . wrong! Pediatricians should really get up to speed on celiac and gluten sensitivity.

Mary Beth