Who was it that said there's a relationship between autoimmune diseases and gluten-intolerance? Amanda? Rachel? Mandi?...my mind is like a sieve

[Jeb]

I am in need of some references to learn how this works. I have had anti-body tests several times for gluten allergy (cellatic disease) and it comes back negative. Today I got a urine analysis back for gluten peptides and it was extremely high. I would like to understand this a little more and educate myself on the relationship gluten has with autoimmune diseases. Both my rheumatologist and primary doctors are good, but they don't seem to agree on this one.

[gfrach]

Probably me. Here's a comprehensive link that should help you:

http://jccglutenfree.googlepages.com/

The blood tests for gluten sensitivity are very prone to false negatives. C and I both tested negative via blood tests, but we had stool tests run after we had been GF for almost 5 months and were still quite positive. Here's where we ordered the stool tests from: www.enterolab.com

[Amanda_Reyasmom]

I am in need of some references to learn how this works. I have had anti-body tests several times for gluten allergy (cellatic disease) and it comes back negative. Today I got a urine analysis back for gluten peptides and it was extremely high. I would like to understand this a little more and educate myself on the relationship gluten has with autoimmune diseases. Both my rheumatologist and primary doctors are good, but they don't seem to agree on this one.

Just speculation, but my TSH levels went down an entire point in the 2 months that I've been GF. Dr is still treating the symptoms, but my TSH is officially "normal" right now.

[aleutsi]

Probably me. Here's a comprehensive link that should help you:

http://jccglutenfree.googlepages.com/

The blood tests for gluten sensitivity are very prone to false negatives. C and I both tested negative via blood tests, but we had stool tests run after we had been GF for almost 5 months and were still quite positive. Here's where we ordered the stool tests from: www.enterolab.com

So.. uhm.. you mailed poo through the US mail? How does that work? Wouldn't the mailman... uhm.. smell it? I'm considering the test for myself and this part of it has me very curious.

[gfrach]

So.. uhm.. you mailed poo through the US mail? How does that work?

LOL!! Actually it was DHL and it was frozen poo in a sealed styrofoam container.

[aleutsi]

LOL!! Actually it was DHL and it was frozen poo in a sealed styrofoam container.

Oh my! Poo in the freezer as well?! LOL I know this is serious stuff and am considering it myself, so please don't feel I'm making fun.. but somehow I've got a 10yo boy inside of me giggling like mad - and an 80yo granny shrieking and saying "You don't put poo in the freezer or mailbox!".

:wackybounce:

[gfrach]

Oh my! Poo in the freezer as well?!

LOL!! No, I hear you. I felt very strange putting my poo in the freezer and I must admit it was horribly odd handing it off to the DHL guy. But oh well, you do what you have to do.

(And it may be easier for me because I have to regularly do 24 hour urine tests which entail having a jug of pee in my fridge for a day. That was really odd at first!!)

[Jeb]

It's pretty hectic here right now...way too much on our TO DO list...so I don't have time to post. I'll post more later. Again...I'm baffling the doctors :)

Thanks for the information. Reading it all is high on my TO DO list now :spinning:

[gfrach]

Well, honestly, it's not hard to baffle the doctors when it comes to gluten sensitivity. LOL!

[anna v]

I don't believe that medical science knows what is going on and that's why there is so much debate WRT immune disorders and gluten sensitivity. We finally decided to ignore the negative bloods and decided against enterolabs (I'm not sure that I like their accuracy as it seems to me that everyone I know who used them got a positive reaction to gluten, doesn't sit right with me) and just get on with a gluten free life for those in the household who seemed to need it.

Gave up on convincing doctors years ago and just quietly accept that no-one at this point in time has the answers. :spinning:

[gfrach]

I did forget to say earlier that I think the biggest answer to whether a gluten free diet will help you is to try it and see how you feel. I feel so much better off gluten that there's no way I'll ever go back--test results or no.

I know several people who got negative enterolab results, FWIW. I do think the results are skewed to some extent because people who don't it's very very likely they have a problem with gluten aren't even going to know about the tests, let alone do them. But there have been some people who've been very surprised to find out gluten wasn't the issue for them at all.