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Need Help On Questions To Ask Gp

JessL30

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JessL30 Newbie
JessL30
Posted

New member here! This seems like such a great forum - I hope someone will be able to help me understand gluten sensitivity a bit better. I have been eating gluten-free for almost 6 months and seen a dramatic improvement in my health (I'm sure many of you understand that dramatic means going from not being able to eat without being sick for days to actually being able to function relatively normally).

To give some background:

I was sick for about 6 years -- constantly seeing doctors who said my digestive problems were related to IBS, stress, anemia, etc and the cycle continued. 9 months ago I was tested for celiac, but both the biospy and TTG blood test came back negative. I showed high levels of intraepithelial lymphocytes. My doctor didn't feel that there was concrete evidence I was celiac but when I asked if there were any other causes of high levels of intraepithelial lymphocytes, he said no. I went gluten-free regardless a few months later and like I said, feel pretty good.

I made another appointment with him and I'm struggling to figure out the kinds of questions I should be asking. I know how bad the consequences of ingesting gluten when you are celiac are but I want to know just how strict I should be. Do you think it's possible the blood tests and biopsy can be negative but yet I still have celiacs? It's a lifelong commitment and I want to be sure. Has anyone had multiple tests done or simply come to the conclusion themselves that 100% gluten-free is the way to go?

THANK YOU!

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Squidge Newbie
Squidge
Posted

My mom went to a conference on GI disorders. She then discussed Celiac's with the PhD nurse practitioner who specializes in this stuff, because I was getting the blood tests at the time. This nurse practitioner said that it's quite common for the blood test to come back negative and a person to still have Celiac's. A lot of the time the marker's just aren't high enough. I don't know about the biopsy though. However, the way I see it is if gluten-free makes you feel better, why stop. If you really want a diagnosis, go to your doctor and tell him that the diet made you feel better. There are also DNA tests tht they can do. They can't positively diagnose it as Celiac's but they can tell if you have the genetic markers.

Lisa Mentor
Lisa
Posted

Welcome!

After being sick for over six years and you have seen a dramatic improvement in your health, it should stand to reason, that a gluten free diet is what you body is trying to tell you.

Good health is always a commitment, whether diagnosed with Celiac or not. It IS evident that you either have a gluten intolerance or Celiac Disease.

If you feel better on this diet, stick with it.

JessL30 Newbie
JessL30
Posted
  • Author

Thank you both! I appreciate your help. I did make another appointment with my doctor so I hope to have all doubts ironed out then. Regardless, I am staying gluten-free!

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