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Question For "symptomless" Celiacs
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I was just wondering if it is possible to never develop immediately noticeable symptoms after beginning a gluten free diet and then ingesting gluten? My son's only truly noticeable symptom of celiac is short stature so it is impossible for us to know if he has been glutened. I have read on this forum that many "symptomless" celiacs did indeed develop symptoms after beginning the diet when they were glutened. It has been 5 months since we began the diet with him and he still has no noticeable symptoms. My husband and I are extremely diligent in keeping his diet gluten free, but we have two other children and our household is not completely gluten free so I find it difficult to believe that he has not eaten accidental gluten at all in the past 5 months. It would be great if that is the case, but hard for me to believe. We have his 6 month follow-up next month so we will know (hopefully) whether or not his bloodwork/body has responded to the diet but I am driving myself crazy with the thought that he may be getting gluten and we would never know it. Any thoughts/advice?

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I was symptomless - at least gastro-wise. I was losing weight and bone mass- but I never felt sick eating gluten products. I have been gluten free for nearly 5 months and have yet to have a reaction. Like you, I can't imagine that there have not been accidents along the way. I am very anxious for my 6 month follow-up. I am also hoping that the blood work and endoscopy shows that the diet is working. If it is, then I think a lot of the paranoia and self doubt will go away!

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I was diagnosed 5 years ago because my iron was low. Otherwise I would have said I have not symptoms. In retrospect, I did get intestinal cramps occasionally, but certainly not every time I ingested gluten. Today after 5 years, it is the same. I recently ate at a restaurant where they came out after I had pretty much completed my plate and told me that they made a mistake and there was gluten in the sauce. I had not symptoms. That is why I stick with this forum and attend my local Celiac Association meetings. I rely on the advice of others, what product/restaurants I can trust.

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My daughter has been gluten free for 5 months and not experienced any stomach aches, or any other symptoms that I can associate to eating accidental gluten. However our house is gluten free (I have celiac as well). She packs a lunch, only has snacks I send, etc so I suppose her risk of exposure is slim, but, she had no GI symptoms prior either- she was only tested after I got my own diagnosis. I am always fearfully waiting for the time she gets sick, but it hasn't occured.

Her 6 mo follow up is next month so I am anxious to see if her TTG is normal, EMA negative, and her vitamin D level in proper range. She has gained nearly 5 lbs since th diet change which has been awesome, we now know she wasn't absorbing properly, even though her biopsy did not show damage-- because she had a positive EMA test, her pediatric GI feels the damage was most likely patchy or just beginning but was most certainly there at time of biopsy.

We are now to a place of sleepovers and play dates, so hopeful we don't experience any gluten issues there.

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My 7 year old daughter's symptoms were extremely minimal too. She did have very frequent stomachaches, which is why we took her to the doctor in the first place, but they seemed pretty mild. Since going gluten-free 6 months ago, she has shown no sign of symptoms from accidental exposure. However, she had her 6-month checkup last Friday and unfortunately her antibody levels are still high. So she is getting gluten somewhere, even though we're being careful and she is being conscientious too, as far as I know.

We're in a very similar situation to you. My husband, other daughter and I are all non-celiac, and there is gluten in the house. And honestly, we haven't been as careful as we would have been if she showed symptoms. Plus, of course, she eats lunch and snacks at school (brings them from home, but eats right next to kids who are eating gluten).

I guess our next step is to be a lot more careful at home -- to behave as if she would get violently ill, even though we know she won't.

Anyway, yes, it is possible for a child to be getting accidental exposure and still show no symptoms. I'm grateful that she doesn't get violently ill, but it does make it hard to know if we're doing a good job.

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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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