Don't Know What To Do

[strum]

I go back for my follow up with my GI doc tomorrow. My blood tests were negative and my biopsy was suggestive of Celiac's but not positive. However, I have been inadvertently eating a very low gluten diet for three months by eating low carb. No bread, pasta, crackers, etc. I know the normal answer would be do a gluten challenge but I tried and it makes me so sick I can't work. I can't miss six weeks of work. And I can't stand the thought of just being that sick. So, not sure what to do or say tomorrow. I welcome any suggestions.

[BlessedMommy]

What did they see on the biopsy? Seems to me that if they saw damage, then it's celiac.

 

Because being celiac is kind of like being pregnant, either you are or you aren't. You can't be a "little celiac." I'm not sure why they would say it's "suggestive of celiac" but not positive?

[SMRI]

My biopsy results say that it's likely celiac but it also lists some other conditions that it could be like bacterial overgrowth so it isn't always cut and dried. Now, my blood work and genetic test came back positive to support the biopsy findings.

Is having the official diagnosis needed for something at work or elsewhere?

[BlessedMommy]

Oh okay, that makes sense! So apparently there are other things that can affect the gut?

[strum]

I guess that's what it comes down to, do I need the diagnosis. Personally, I would very much like to know for sure. I think compliance and understanding would be much easier with a definitive diagnosis. I'm not sure how it might effect things down the road as far as insurance or work, I just don't know.

[sweetsailing]

Given the uncertainess with your tests and eating very little gluten at the time of testing.  I would make sure that you get genetic testing done.  While it can't conclude that you absolutely have celiac.  It can rule in or out the possibility and provide one more piece of the puzzle that would help support a diagnosis.

[LauraTX]

Have you had the genetic test done? That plus the biopsy may give some more clues

[strum]

So, my doctor basically said he doesn't know what's wrong with me but if gluten makes me sick and not eating gluten makes me better he would like to try for months with a gluten free diet and see how I do. I'm not thrilled with not knowing, but I am happy at not doing a gluten challenge.

[cyclinglady]

I was formally diagnosed last year, but my husband (who has been gluten-free for 13 years per the advice of his doctor), was not. It was hard for him to comply with the diet in the beginning, but after a while he realized how much better he felt. He gets sick if he accidentally gets glutened just like me!

So, it is possible to go without a formal diagnosis, but he would be the first one to tell you that I have received a lot more support from family, friends and medical. I have an Aunt and cousin who both have given up gluten after inconclusive tests. They do not want to do the challenge now that they have been gluten free for over a year.