4 replies to this topic

[Ashley462]

Hi, I'm Ashley and I'm 14 years old. I have been gluten-free for about 3 weeks.

On Friday I was tested for Celiac Disease. My docotor said MANY of her patients are gluten-intolerant, but the Celiac Disease does not show up! Its very clear to me that whenever I eat gluten I am in pain, and when I dont, I feel fine.

The test said I did NOT have Celiac Disease. Thats great, but are any of you gluten-intolerant w/out Celiac?

Just Curious,
Ashley

[gf4life]

Hi Ashley,

I am a mom of three kids, ages 5, 7, & 9, and we are all gluten intolerant without Celiac. Only me and my daughter have the gene for Celiac Disease, but we don't have enough damage in the intestines to be called Celiac yet. (And I do not plan on waiting to get further damaged!) Celiac is just what they call the worst form of gluten intolerance. But you still need to stay on the gluten free diet for life. Even if it isn't Celiac. It is just as important to your health. I hope you are feeling better on the diet. You are lucky that your doctor recognises gluten intolerance without Celiac. Most don't and us patients are left without follow-up care since our doctors won't believe us that gluten is our problem.

God bless,
Mariann

[Ashley462]

Thanks Mariann

[gf4life]

You're welcome.

God bless,
Mariann

[celiac3270]

What test did you get done? Blood test or endoscopy? There are cases where the blood test finds you not to have Celiac, but the scope does, or the other way around. It could be that he said you have an intolerance because the blood suggested, but didn't strongly indicate Celiac, or something like that. If you had both tests done, then the doctor's probably right, but keep in mind that the blood test isn't always 100% accurate, though the biopsy almost always is. However, I guess gluten-intolerant or Celiac, you'll still need to be on the gluten-free diet, so it probably doesn't even matter.


- celiac3270
13 yrs. old
13 wks. gluten-free