8 replies to this topic

[ssauners]

Hi,
It's been a whlie since I've been here,but I'm glad to be back. Reading and learning here has been so helpful to me. I took myself off gluten 2 yrs. ago bec. someone suggested it might help me.I was suffering from constant gas,bloating,cramps,and constipation.Going gluten-free seemed to help but i didn't give me enough relief.
I went to a new GI dr. in Oct. and he listened to me list of symptoms and said I have IBS w/C.He gave me Zelnorm and that was it.I came home and researched what to do to help the IBS.The diet I found has made me feel so much better.
So I asked my dr. to do a new blood test to see if maybe I don't have celiac disease.(prev. tests were neg. but I had been gluten-free) Anyway,I ant to be sure this is done rt.
I see that certain labs are suggested as being better able to give accurate results.Does anyone know how I can have my blood work checked there? The dr.'s nurse said I could have it done anywhere,but not in his office.
Hope someone has some ideas.Thanks so much,Suzy

[kalo]

Hi Susz. Do a search for Enterolabs or celiac testing. Enterolabs has a non invasive stool test that is MUCH MORE reliable than the blood tests are. What sort of diet are you on? Hugs, Carol B

[angel_jd1]

Enterolab isn't covered by insurance (at least not most) and also isn't accepted by most mainstream medical doctors. So if you do get a diagnosis from Enterolabs, most doctors do not accept it(yet, maybe never?). If you have problems with either of those things, then it is not for you.

-Jessica

[kalo]

That brings up another question. Why do we need a doctors blessing or diagnosis if we know for sure through the stool test that is what we have? I know it's expensive but I keep hearing how reliable it is and to me that means everything.
:-) Hugs, Carol B (just curious, not putting anyone down)

[angel_jd1]

Kalo-
Here is a whole thread full of reasons why to get a formal diagnosis:

http://www.glutenfre...st=0

-Jessica

[ssauners]

Hi all
Thanks for your helpful ideas.
I had Entrolab do my gene tests,but wasn't brave enough to do the stool test.
Since I have been doing so well lately I am questioning whether I really have celiac disease. The IBS idiet I am on is what I term the
A.F.M.C.C.C.IF(AVOID FATS,MILK,CAFFEINE,CHOCOLATE AND USE CAUTION W/INSOLUBLE FIBER--insoluable fiber needs to be cooked and eaten only w/soluable fiber) diet.
I am now adding gluten products so I can be retested.
It seems so strange to me that I can now eat these things w/out having a reaction.
Really makes me wonder if I only have IBS.
I figured I'd just do this challenge fr 3 months and then have blood work done to see.
Now I am wondering if I should go ahead and have the stool test done,or if since I am doing so well to just go w/the blood tests.
I saw that there are 4 or 5 places that are reliable for having the tests done,but none are near me.
Was just wondering if there is a way to have the blood drawn locally and sent to them(then again I know nothing about medical stuff so don't know if this is feasible)

[kalo]

I just saw the post on WHY you need a formal diagnosis. So HOW does one do that if they have negative blood tests but a positive stool test from enterolabs and their doctors don't accept it? I won't have any problems since my doctor put me up to this in the first place. Just wondering about others and why doctors won't accept Enterolabs. He is a doctor (Dr. Fine) and it seems pretty reliable. Maybe others can find a new doc that will accept it. We go through this on my thyroid group. Trying to find a doctor that thinks outside the box and listens to the patients. Just curious. Hugs, Carol B

[tarnalberry]

One reason there is so much skepticism about Dr. Fine's tests (and I'm still a skeptic), is that he doesn't not publish studies for peer review or share his process with the medical community. The responses from him that have been posted on the question that I have read imply the belief that other doctors should just believe him without going through the peer review process. The cynic in me thinks he's doing this for business reasons, to keep other labs from being able to do this testing and take business away from him, but that may not be the case at all.

European doctors, who are much more advanced in studying this disease, are starting to develop stool tests themselves, and are using a peer reviewed and scientifically accepted way of going about it, so there may be other stool tests available in the future, and it may possibly vindicate Dr. Fine's tests.

[kalo]

Is it possible he's to busy doing what he's doing to take the time for peer reviews? Treating thyroid with Armour is the same way. Doctors don't accept it. Or guaifenesin for Fibromyalgia. Dr. Paul R. St Amand hadn't been through the peer reviews either (he wrote the book on this treatment). However I was a part of a support group with many women who had improved by his treatment and didn't care about peer reviews. In my book if something works, that's proof positive. Don't even get me started in my UNBELIEF in the placebo affect. LOL Hugs, Carol B