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Fairly New, Need Help!

Beckster

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Beckster Newbie
Beckster
Posted

Hello Everyone!

This is my first time on a message board...I need your expertise please! I have been gluten free for almost 3 months now. I've had the blood test but it actually came back negative. The doctor and I still both feel that this is a false negative so I'm scheduled for a biopsy. My doctor also wants to check for Crohn's but I just know that's not what this is. So that would mean a biopsy and a colonoscopy on the same day!!! Don't know if I really want to do that though...I feel 100% better when I don't eat gluten.

Anyway, my real question is this...How on earth is anyone supposed to be able to read food / product labels to check for "hidden" gluten? Everything I've read (and I've read A LOT!) says to watch out for hidden gluten but then doesn't tell you what words to look for! It's very frustrating to think you're eating the right things, only to find out that you've had gluten!!! And what about other products like makeup and shampoo etc...

Can anyone help me? Is there some magic book out there? Also, any opinion on the other tests? Do I really need some other test to tell me what I already know?? Cost is not a concern.

Thanks in advance for any advise you may have!

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RiceGuy Collaborator
RiceGuy
Posted

If you haven't already, check this for foods and ingredients: https://www.celiac.com/st_main.html?p_catid...-35105194997.81

Now, as for the tests, I've not done any. Like you stated, I feel I already know what I have to do - totally gluten-free for me! All the doctors I ever went to didn't have a clue, but many did steer me wrong and made things worse, so I am not too happy with the medical industry at this point anyway.

Many want to be sure and so they get the testing done at some point, even if they wait awhile before doing it. The problem is, you have to eat gluten to get accurate results, though I've read that at least one lab claims high accuracy even if you stay gluten-free for testing. From what I've been reading from this forum, the longer you are gluten-free, the more severe the reactions if you have to eat gluten for the tests.

KaitiUSA Enthusiast
KaitiUSA
Posted

First, if you have been gluten free your blood test and your biopsy would probably come back negative. You have to be eating alot of gluten prior to testing. They say equal to 2-3 pieces of bread for 3 months prior to testing. A biopsy can only rule celiac in and it can not rule celiac out.

Second, if you would like you can email me(my email is in my signature) and I can send you some lists of gluten free products and foods as well as brands that will not hide anything and what you need to look for on labels.

kabowman Explorer
kabowman
Posted

I know a lot of people are very careful with their beauty products but I don't worry about shampoo - it doesn't drip down into my mouth and I rinse my hands before putting them near my face. Kids you would have to worry about.

I am careful about my makeup and my lotion because I do put my hands in my mouth (like for a hangnail, or a snag, etc.) and many lotions have ingredients I can't eat. Lipstick is something else I am very careful about.

You will get better at remembering what ingredients you can and cannot have as you go along. Keep reading...my oldest son helped me a lot in the beginning, my youngest doesn't have the patience but an extra set of eyes really helped me.

I had the colonoscopy to rule out chrones, I had the biopsy which was negative, and I refused to go on a gluten challenge for blood tests. I had one doc out of 4 that suggested I "might" have a problem with gluten and maybe I should look into that, which I eventually did, several years later.

My docs now say, glad you figured all this out, glad you feel better and know what makes you sick...end of story. That used to bother me but really, what can they do.

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