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

LauraB0927

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LauraB0927 Apprentice
LauraB0927
Posted

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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GottaSki Mentor
GottaSki
Posted

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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    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
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      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
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      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
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