Don't Know What To Do!

[Glutenfree psych nurse]

I have had an endoscopy and a colonoscopy doctor said he didn't find anything wrong. He would not do a blood test. He said his dx would have to be IBS. I went gluten free for 6 weeks before going back to see the doctor and I felt much better. I told this to the doctor at my last appointment and he told me that it didn't matter, gluten was not my problem. I'm now totally confused. I've still been gluten free and feeling better, but I would like a confirmed dx. I live in a small town and he is the only gi doctor here.

What should I do now?? Any suggestions are greatly appreciated!!

[WinterSong]

In my experience, IBS is a collection of symptoms and a name that doctors give you when they can't figure out what's wrong with you. It could be that you have a gluten intolerance rather than Celiac, but if you want to truly see if you have Celiac, I would drive to a bigger town where you can find a doctor who is more open to giving you a blood test. But this does mean that you have to do a gluten challenge and be eating gluten for several weeks (I believe that some doctors say 6-8 weeks) in order to get an accurate reading. 

 

I do have several friends, though, who say they have Celiac and live their life that way but didn't get tested because they didn't want to do the gluten challenge. I have an official diagnosis, and for my own piece of mind I'm very happy that I do. If you think you're up for the challenge, I'd say go for it.

 

Good luck!

[SkyBlue4]

If you are already gluten free and you feel better gluten free, I would forgo the whole formal diagnosis at this point and stick to the diet.

 

If prefer to continue to be evaluated for celiac disease, then you have to go back on gluten and continue that for several weeks before further testing.

Perhaps ask your PCP to run the Celiac panel for you? Make sure your doctor includes the Total serum IGA to be sure your IGA test results are valid.

[Adalaide]

You say you had an endoscopy and colonoscopy but you don't say if you had biopsies taken. You also don't say if you ever had blood tests done. You should get a copy of all of your test results. Only you can decide if pursuing a diagnosis is right for you, but you'll have to do so by finding a doctor willing to do so. This may mean driving to a larger city for your care.

[Glutenfree psych nurse]

He would not do biopsies because he said he "couldn't see any damage" he did not do any blood test either.

[GF Lover]

In my opinion, your Doctor is an idiot.

 

You must take biopsies because the damage may not be visible. 

 

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You might want to start from scratch with a new doctor, go out of town if you need to, and a gluten challenge for blood work and endoscopy.

 

Good luck with what you decide to do.

 

Colleen

[GottaSki]

I agree with Colleen completely.

Sorry to hear of yet another doctor that is uneducated to correct celiac testing procedures.

If you are not able to resume ingesting gluten....perhaps talk to your primary about running an antibody panel....it is a long shot, but some folks antibodies don't return to normal range for several months.

Or request gene testing - having celiac genes does not mean you will develop celiac, but perhaps genes plus dietary response will be sufficient data for you to choose living gluten-free without a formal diagnosis.

Good luck to you

[cyclinglady]

I agree with Colleen and Lisa.  Your GI should have ordered a celiac disease panel and done biopsies.  I'd try to get another doc to do the test. 

 

That said, I'm officially diagnosed, but my husband (who has been gluten-free for 12 years has not).  We'll never know if he has celiac disease as he won't do the challenge.  Who can blame him?  He knows that being gluten-free is right for him.  I am glad of my diagnosis, since it helped me in getting support from family and friends.  It's been difficult for my husband.  

[frieze]

He would not do biopsies because he said he "couldn't see any damage" he did not do any blood test either.

ethically, if not legally, your doc is guilty of malpractice for not meeting the "standard of care."

[nvsmom]

I agree. The doctor messed up.

 

Best wishes in whatever you decide to do.