Confusing Comment From Gastro

[Eclara]

I had a negative biopsy last December after an 8 week gluten trial that triggered a whole host of new symptoms for me. I went to see a new gastro last week because I'm still having so much stomach pain and he was the absolute worst. He made some confusing comments to me that I was hoping for some insight on.

 

Me: "What should I do about the stomach pain? I never, ever had upper stomach problems before the gluten trial."

Him: "Well, you absolutely don't have celiac but you've changed the way your digestive system works."

Me: "What?"

Him: "Maybe you just can't eat quite as much gluten or other foods as other people can."

 

He said a lot of ridiculous things during our appointment and went on to diagnose me with IBS (shocking!), but I was really baffled by the "you've changed your digestive system" comment. Is that a legitimate claim? What does it mean?? I couldn't get him to clarify...

[emaegf]

No not a legitimate claim. He couldn't clarify because it was BS, he didn't know what he was talking about. It's common for a doctor to diagnosis IBS when it's really Celiac but the tests come out negative. Diagnosis is three fold for Celiac and all steps must be considered before making a diagnosis. Testing should occur BEFORE patient does even a short gluten free trial or false negatives can and do result. Steps for testing for Celiac 1- Blood testing checks for antibodies in your blood;  2- Intestinal Biopsy; 3- Gluten free diet trial. If 1 and 2 are negative but patient responds to diet trial patient could be Celiac but test results are false negative (happens a lot), patient could be nonCeliac gluten intolerant, or gluten sensitive. All require the same treatment - a gluten free diet. Do tests yet for the nonCeliac gluten intolerance but sensitivity may show up on allergy testing.

 

You went gluten free for 8 weeks before doing testing? You got inaccurate results. Or you ate gluten for 8 weeks before testing?  If you'd been gluten free for a while then wanted to do testing you need to eat gluten daily for 12 weeks minimum before testing for it to be accurate. And even then your results could be false negative.

 

If you did well off gluten go back off and see how you're doing. If you were gluten free then ate gluten again for the testing you did damage to your system and need to reheal again. Some have luck while staying gluten free they include probiotics daily, tonic water seems to help for the stomach problems, eliminate dairy and oats even gluten free ones for a while so your system can heal then reintroduce them in six months. And stay away from clueless doctors.

[Brandiwine]

Dud you have any improvement on the GFD? You may still have a gluten intolerance and now gluten-free are still consuming foods that bother you. Dairy is usually at the too of the list, but we all have different issues with different foods.

No I don't think you "changed how your digestive system works" whatever that means! How do these people get through med school?!

[Eclara]

Thank you for your replies! I thought it was an odd thing for him to say.

 

I probably should have been more specific. I am completely gluten-free! I was gluten-lite (not outright eating gluten but not avoiding cc and still consuming questionable foods like soy sauce) for two years before the gluten challenge, during which I ate a loooot of gluten and got veeery sick. It's been about five months completely gluten-free since then and my symptoms have improved a lot, especially when I took out dairy, soy, fructose and grains. I still suffer from stomach pain and unhappy bowel movements that interfere with my quality of life a lot and I have trouble finding things I can eat, which is why I went in to see if a different gastro had any other recommendations for me.

 

Apart from suggesting I had somehow modified my intestines (and have I considered going on anti-depressants?? He HIGHLY recommends I talk to my PCP about that!!), he was not very helpful.

[Brandiwine]

I would find a better Dr. Some one you trust and who takes you seriously.