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Wow, I Am So Glad That I Found This Site


Carl's mom

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Carl's mom Newbie

Although my son (age 9) has not formally been diagnosed as a Celiac, we strongly suspect that this is the case. For most of his life, he's had daily D. We didn't think much of it because as an infant he had a bowel intussesception (where the small intestine gets stuck in the large intestine), which required emergency surgery. Because of where the incision was located, they also took out his appendix. When we asked about the D, the doctors always told us it was likely related to the lack of appendix.

Fast forward a few years, he had chronic sinus infections (6 in four years), constant coughing, fatigue, bloated stomach, and still the D. Allergy testing revealed nothing notable. So rather than continue to give him antibiotic after antibiotic and steriod inhalers, I finally took him to a Nutritionist/Naturopath about a year ago. In addition to some probiotics and other suppliments, she put him on a wheat free and dairy free diet. Things got better, but not much until we took him off all gluten. (he also seem sensitive to all corn products, in addition to gluten and dairy).

He's gotten much better, but still suffers from some congestion and D, particularly when he cheats. He struggles ALOT with having to eat differently from the other kids, particularly in school when they have parties. I will send in treats just for him, but he will on occasion "forget" that he has his own.

A year ago, I knew nothing about Celiacs. I found this site while searching for gluten free cookie recepies for Christmas (and thank you for the flour combination suggestions, the gluten-free cookies I made were yummy!!!).

Now I think we should have Carl tested, but I don't think we can since he has been gluten-free (well, almost gluten-free) for over a year. What to do?


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blueeyedmanda Community Regular

Welcome to the site.

I know a lot of members on here have used dietary response as their "test" Some people test negative and feel better avoiding gluten.

I hope this helps.

Feel free to ask any questions you might have.

loraleena Contributor

You could get a stool test through Enterolabs. Accurate even if off gluten for a year. Just the fact that he is doing so much better though is all you need to know.

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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