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Frustrated! Should I Test Or Not?
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5 posts in this topic

GrRRRrrrr.

I went gluten-free about 5 months ago and had an immediate and profound relief from my symptoms, which included almost daily migraines, GI symptoms, and extreme stomach pain.

I identify myself as 'gluten intolorant' and am fine with the dietary restrictions.

A majority of my mother's side of the family have definitive diagnoses of Celiac.

My mother has symptoms that respond to diet, but was negative on the blood test.

People keep telling me I should get tested. My husband's gastroenterologist (DH has Crohns' and for some reason decided to tell his doc my story) insists I go back on gluten and get tested. Friends of ours are all on my case about testing, and now my husband is bugging me about it! Ironically, it was his idea that I 'try the diet' instead of getting tested way back when I first suspected gluten and talked to him about my options - to test or not.

Everyone is driving me nuts and making me feel like I'm not taking care of myself! My thinking is: WHAT will I gain from going through the misery and getting tested? I refuse to do it just to stop the nagging, but it's getting really depressing having people I care about disapprove of my decision. Truthfully, if I tested and it was negative, I would still go back on the diet! I feel like all I will gain by being tested is a new pre-existing condition I can be descriminated against with.

Please tell me what I should do!

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WHAT will I gain from going through the misery and getting tested?

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It really is kind of an individual thing I think, weather to go for the full diagnosis or not. I had been off gluten for 4 months when I finally got to see a Dr. that specializes in it. I wrote down my symptoms before hand and he read them over and said it sounded like celiac to him. I was considering going back on gluten to do the biopsy testing but decided against it. I was feeling so much better off the gluten that I didn't really need any other "evidence" to convince me. Plus the history of other family members with GI diseases and related conditions. It is kind of silly if you think about it. Make yourself miserable for a couple months just so you can be told not to eat something you already know is hurting you. That is assuming you know that already.

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Of course they think you should do a challenge, they are not the one's who would have to deal with the pain, the D, the fatigue and the risk to a system that has already shown how much it does not like gluten and how much better it feels without it.

It is your body and your decision. You could consider a short 'until I react' challenge if you haven't had enough of them already through cross contamination and the slip ups we all make in the beginning. Your response might be enough to at least get DH on your side.

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Some questions to ask yourself:

1. What would you do if you got a positive diagnosis? Would it change anything in your life?

2. What would you do if you got a negative diagnosis (because a negative is likely after 5 months gluten-free)? Would you go back to eating gluten or not?

3. Are the answers to questions 1 & 2 worth going back on gluten for?

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