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I'm Celiac, Could My Sis Be Gluten Intolerant?
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Hello everyone!

Since you are all so incredibly knowledgeable and have helped me out so much thus far, I'd figure I'd throw this one out there...

In May I found out that I was Celiac - I definitely was the atypical kind since I didn't experience GI symptoms before diagnosis. We found out that my mother has the DQ2 gene and my younger sister had the Celiac panel done and tested negative. I started the Primal diet (I posted about it in another section) and after seeing my success with it, my sister decided to go along with me to help her lose weight. She had been on the Primal diet for about two weeks and decided to have a cheat day last Friday and had croutons in her salad. She became sick with abdominal pains and constipation for three days.

Could she have had a masked gluten intolerance that we didn't know about? Just like I never suspected Celiac disease for me? Is it possible for one sibling to be full blown Celiac and the other one gluten intolerant? I figured that with intolerance, it would have popped out and reared its ugly head before now. Clearly her body doesn't "appreciate" gluten now and she should just go gluten-free, but she keeps asking me if her reaction could just be attributed to the fact that her body hasn't had gluten in two weeks. She's willing to go gluten free but just wants some feedback regarding if this could be an actual intolerance or her body just re-adjusting to something just added back into her diet. Any thoughts?

I've also suggested to her to create a profile on here and start asking some questions since you guys are amazing!!!

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Hi Laura and pass a welcome to your Sis!

It is not possible to become intolerant of gluten by removing it from one's diet. I have seen a several references to this over the past year and it is not true. There are MANY foods we don't eat on a regular basis - if we developed an intolerance every time we didn't eat a particular food for some time - EVERYONE would be intolerant of seasonal fruits and vegies - EVERYONE would be intolerant of certain meats and grains that aren't in their diets on a regular basis.

There are a couple possibilities. One she is Non Celiac Gluten Intolerant. Another would be that she had "silent celiac" trigger at some point and perhaps isn't making enough antibodies yet for detection in blood. I could probably think of a few more scenarios if she needs convincing. Make sure she had a Total IgA in her Celiac Panel - if she is low on Total IgA, all other IgA tests are not valid.

I would guess she might have a few other improvements in her health given more time gluten-free &/or will become even more sensitive to gluten exposure.

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    • I thought I would update you all.  I started to eat gluten shortly after this post.  I was miserable by the time I had my EGD.  The doctor gave a diagnosis after the EGD was completed, duodenitis, gastritis and hiatal hernia.  I had abnormal mucosa of the whole stomach and severe inflammation.  The biopsy results came back today, they stated early stages celiac disease.  I wonder what it would've shown if I wasn't on a gluten free diet for two years?  My doctor said he still wants me to come in for a talk, he doesn't really know if he should call it celiac disease since it's early stages....  WTH!  I've really got to find a doctor that specializes in Celiac Disease...    
    • thank you for the info, its very helpful to hear from someone else who has it and knows a lot about it. When you say I may be eliminating one problem vs 3, what would you think the other problems could be? It's frustrating because I even buy Uldis gluten-free bagels and what not and I still find myself reacting sometimes to that, I don't use butter but just gluten-free peanut butter, but like I said I don't know for sure if its from that or maybe something else. I have read on this site about a couple others that have had issues with uldis breads so could be that. but like you said I guess it can also just take awhile to get better. I read the other day that a lot of throwing up can put stress on your small intestine which can maybe cause your body to react to dairy, do you know anything about that or if that's true?
    • Thanks for the reply!  Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...) Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in.  Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.
    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
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