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My Cousin's Son


torimuse

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torimuse Rookie

I don't know a lot of real specifics, but my cousin called me the other day very concerned about her son, and I'm hoping to make sure what I told her was right, as well as see if there's anything else I should add.

Her youngest son is (I think) just over a year old. Her other son is seemingly normal.

I may have a couple events in the time line in the wrong spots, but I'm hoping I get it right.

He was on breast milk for the first 5 months of life. He was then introduced to cow's milk, broke out in a nasty rash, diarrhea, the works. Diagnosed Lactose Intolerant. He was put on soy formula after that. Later on down the road he was introduced to whole foods and soy milk. (I wish I knew brands, but I don't.) He broke out in a rash again, was completely miserable, screaming and everything. His mom put him back on the soy formula and the rash went away, though the diarrhea seems to be persistent.

What she knows is that he can't have soy milk or cow's milk without a rash and complete misery, and he has pretty much constant diarrhea. He continues to drink the soy milk formula, but she really wants to be able to stop buying baby formula for a toddler. The little one eats everything his big brother does, which includes glutenous foods.

Evidently, the little one has shared symptoms with her brother's daughter, indicating a genetic link. I'm self-diagnosed myself, so I can't help them much in that regard.

I told her to keep him eating gluten for right now, as well as try to avoid anything with casein in it, since that could be in the soy milk, and the cause of his problems. She's going to get him tested, but I can never remember the names of the tests for Celiac's, though I did suggest that she try and get the biopsy done, too, and to make sure they take more than one or two samples. I suggested that she fight for it if the doctor is reluctant, and she at least has gluten intolerance in the family to help back her suspicions up. I also told her not to wait for the results of the testing before putting him on a gluten-free diet, and seeing if that brings about any changes. She's thinking about getting herself tested, too, because our side of the family is chock-full of different health issues, so we might all be undiagnosed Celiac's for all we know.

Did I tell her the right things? I can always call her and give her new and updated information, as well as get any information you guys might need.


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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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