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Self Diagnosed...now What?
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I stopped eating wheat products last August at the suggestion of a friend and felt much better. My blood tests in September though were "inconclusive" according to the MD. I have not seen the actual reports. After seeing the GI for a pre-endoscopy appt, I was told I'd have to go back to gluten for 4-6 weeks. I only made it two days before I was in such pain I went back to a gluten-free diet. Now that I've discovered gluten sensitivity though, I'm wondering if there are other tests I should have, or dietary supplements I should be taking? Is it OK to just acknowledge g sensitivity or do I need to pursue positive testing for celiac? From reading this forum, it seems that I should be asking someone for a bone density test. Which kind of MD do I go to for that? My own MD asked me which blood tests they needed to perform... didn't make me feel very confident.

Thanks!

Lori

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No one every said that you need a doctor to tell you that you should avoid something. If you have a diet that is working for you and you are feeling good on it than just go with it and don't worry about a dx unless you need one for another reason.

If you want a dx, (I don't blame you if you do) You could do the enterolab stool test which says it is sensitive enough to pick up gluten even after it has been eliminiated some times for up to 2 years. There website is www.enterolab.com It is none invasive and a test you do at home and then send it back to them. I would recommend the gene test and stool test. If the stool test comes up clear it may be because you have been gluten-free. But if the gene test shows that you have the gene that Celiacs have then you can know that you are probably gluten senstive from how you were before going gluten-free.

Another thing to note is some doctors dx celiac disease by using a gluten challenge, which sounds like you did and are sensitive.

By the way, your doctor may not know very much about celiac disease, but be happy he was willing to ask what tests you need. A lot of doctors won't even admit they don't know something like that. The blood tests probably won't show anything because you have been gluten-free to long.

Hope this helps :)

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I've opted not to go any further than dietary challenge. And due to the few occasions where I have gotten "glutened", I've come to recognize the response my body has (it's different the first time, as opposed to how I am if I constantly eat gluten... it's an interesting pattern), so I'm comfortable with a dietary challenge having determined this. And my GP is willing to take it as a confirmation as well. Some of my other doctors are more skeptical, but I don't really care, as it's up to me to manage it, not necessarily my asthma doc or the like.

I'm not sure about other tests, as I haven't looked into it as much as I should...

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I agree with Tiffany. My doctor accepted the dietary challenge, now it is up to me to eat right for me. Even if my doctor had not accepted it, the outcome would have been the same. I had already changed my diet, was feeling better, and refuse to go back.

So, Now What? Now eat right for your body, and take care of yourself.

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Thanks for the reinforcement folks - I guess I'll just continue on my road of trying to learn a little more every day. This site certainly helps with that! Last night I printed a list of gluten-free products that I found here...Wow! 42 pages of food that I CAN eat :P

Blessed be,

Lori

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    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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