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    Do you have questions about celiac disease or the gluten-free diet?

SarahRenee

I hope some can give me a peace of mind

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Hi all! I hope everyone is doing well. I am a 33 year old mom of 4. About 10 months ago I started to have extreme stomach problems: bloating, nausea, running to the bathroom several times a day and only liquid coming out. I couldn't leave the house some days. I put up with this for a while hoping it would just get better, but it never did. I finally thought maybe I was lactose intolerant, so I cut out dairy which helped a little but didn't solve the problem. 

 

June 3rd I decided to do a juice cleanse hoping it would help. I drank only juice for 5 days. During the cleanse I thought maybe gluten was the problem, so after the 5 day cleanse was up I stayed away from dairy and gluten. Things improved drastically, but after 2 weeks of avoiding gluten I read about Celiac Disease and how you need to stay on gluten to be tested. I made an appointment with my doctor, and he said he would test me but may come out negative since I've been gluten free. The test did come out negative, and I will post the test results. My question is would going gluten free for 2.5 weeks actually affect the test results? Can I feel good about the negative test?

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Hi SarahRenee,

Welcome to the forum! :)

Unfortunately, being gluten-free does impact the accuracy of the celiac tests.  They can't be relied on if you weren't eating gluten.  What is pretty reliable though is your bodies reaction to foods.  If you felt better going gluten-free there has to be a reason for that.  Most people don't have a bad reaction to eating gluten.  You can see that for yourself by going to the grocery store and watching all the people buying bread, cookies, cereal, pizza and more.  They would not do that if gluten made them sick.  You shouldn't do eat it either though, as you know gluten does make you sick.

You can choose to go back on gluten for 12 weeks to get the blood tests redone.  12 weeks is the standard time to eat gluten before the blood tests.  Or you can stay gluten-free and live without gluten.

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Hi!  

Labs have different ranges.  Did the lab ranges show that the celiac results were negative?  Also, it is odd that the standard TTG test was not taken (or do you not post?).  The TTG is usually the “Go to” screening test.  The DGP tests usually are not given during a screening (first round).  

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It only takes one positive on the complete celiac panel (and you are missing three tests) to move forward with a GI consult.  Some people do not have any antibodies (about 10%) yet they have celiac disease.

For example, I test positive to only the DGP IgA.  Usually, the TTG is ordered.  If my GI had not ordered the complete panel, my diagnosis would have been missed.  

Now this is rare, but Dr. Fasano did state that some celiacs can alter their tests results by being gluten free in as little as two weeks.  This could be possible if you were just juicing.  

Consider getting a GI consult.  You may have celiac disease or something else like Crohn’s (lots of IBD patients say that going gluten free helps them — like my neighbor who has Crohn’s).   Something is definitely wrong.  

Edited by cyclinglady

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