My Gi Doctor Called Gluten-Free A 'fad Diet' Today...

[Ikgbrd]

So I went in to have my first endoscopy and biopsy today, and after my experience with the GI doctor I'm pretty upset and I'm not sure what to do. Ill start by saying that I did not do a gluten challenge, I just couldn't stand it, but I figured the procedure was worth getting anyway.

I don't quite remember my conversation with the GI doctor, as I was still pretty out of it, but I just spoke to my mother, who was incredibly angry with how the man spoke to me. Apparently he said everything looked normal, but we're waiting on the results of the biopsy. I explained to him why I did not do the gluten challenge, and told him from the research I've done I've been under the impression that a DGP IgA of 38 was a pretty solid celiac indicator. He told me not to jump to conclusions and said something along the lines of it being a fad diet. His nurse told me two weeks ago that if my other levels weren't elevated that it was inconclusive.

I then told him that if my biopsy came back negative I would like a colonoscopy, and he told me that he didnt think that it would be necessary. I'm so angry. I'm still having problems and I just want them solved.

I don't know what to do at this point. Obviously I'm waiting for the biopsy results, but I think I really need a new GI. I don't even know where to began finding one who understands celiac disease though. None of the doctors I've spoken with seem to take it seriously at all. What am I supposed to do?

[nvsmom]

(hugs) It's frutrating how doctors treat people. Not all doctors, but many that I have dealt with seem to forget that their 15 minutes spent with us affects all of our everyday lives - it's not just a 15 minute snapshot for us.

 

My advice would be:

Wait for the biopsy without murdering your GI. It seems to me that most people who have the endoscopy are diagnosed by the biopsy and not a visual assessment of their intestines (except in so bad cases). There might be damage to the villi that he couldn't see.

 

I would also advise embracing the gluten-free diet completely as soon as you can. Even if the biopsy is negative, you could have non-celiac gluten sensitivity (NCGS) which has every single horrible symptom and complication that celiac has,except for the villi damage. While celiac disease is present in less than 1% of the population, NCGS is thought to be found in 6 to up to 30% (most stats are on the lower end) of the population.I can't remember how far you are into the diet, but give it a good 4-6 months to see improvements in most areas before you dismiss the idea of NCGS.

 

As an aside, the only blood test thought by some to show NCGS are the anti-gliadin antibodies (AGA IgA and AGA IgG). They are the only tests that show a reaction to gliadin rather than villi damage causing antibodies. It's not the most sensitive test though.

 

If you continue to have issues in a few months, I would see another GI for the colonoscopy. Perhaps make the appointemt now, for 4-6 months from now, and then if you have improved on the diet you can cancel, but if you still need it, you won't have to wait months and months to get in.

 

Let us know how the biopsy goes.

[cyclinglady]

Hang in there.  Like NVS Mom said, you have to wait for the biopsy.  Even though my results indicated Marsh Stage IIIB, the doc wasn't able to see any damage or even inflammation.  As far as the colonoscopy, I had no damage, but didn't expect it.  I was just tested for polyps, etc. since I'm over 50. 

 

My husband is gluten intolerant (we think) and has been gluten-free for 12 years.  There's no way he'll ever do a challenge to check for celiac disease. 

 

Get off wheat for the next year and see how you feel. 

 

Good luck!