Exasperated. I think that’s the best word.

Question

Exasperated. I think that’s the best word.

End of November last year, my son was confirmed Celiac by endoscopy. Intolerance, not allergy (so constipation/diarrhea, but no anaphalaxis).

December: began gluten-free diet.

January/February: still lots of gas, SIBO likely per GI.

February: grew an inch in a month!

March: I added lactaid – huge improvement on gas/bloating.

late April/May: added glutenease (it has enzymes to help digest casein in dairy; used with lactaid prior to any cheese/yogurt/butter, just in case)

May/June: possibly glutened? no idea – nothing obvious or even careful screening indicated where/how; symptoms there, but might also have been something else.

end of June: dairy-free, giant step forward developmentally.

early/mid July: constipation, diarrhea, more congestion; this time it’s not a sudden change, though, just sort of creeping up in intensity.

So, questions:
1) can someone with celiac develop other intolerances?
2) if so, are those intolerances permanent or does it just depend? (I suspect it depends, assuming the answer to #1 is yes)
3) our go-to for side dishes is brown rice, his favorite snacks now are cinnamon chex and Lance’s gluten-free peanut butter crackers. Common denominator: rice, and (I think) mostly brown rice flour. so could my son be developing an intolerance to brown rice? or rice in general?

The trick is that he also has autism-related sensory issues, so “just swap the food” is not in any way a simple thing. He’s also nonverbal (speech is emerging, though), so he can’t tell me exactly what’s happening, how he feels, etc, so it’s mostly external detective work…..thank heavens for you folks here who can share experience!!!

What is happening? Thoughts/ideas/suggestions/commiseration?

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Keyna 3 years 0 Answers 376 views 0

Answers ( No )

  1. Oh, man. I’ve definitely been there (still there, I guess)! It took me a while to figure out what my son was reacting to other than gluten. For us, it ended up being dairy, soy, and corn. We eat rice, but white only, it seems very neutral for us. I think brown rice can bother some people and also leach nutrients. We try to keep processed foods to a minimum. I would get it down to foods you know are safe, and add a food back in every few days and see what happens. Easier said than done, I know!

  2. I don’t have much to help you but I totally get the inability to just switch out! My 12 year old is autistic and minimally verbal and eats like 10 things. If the juice boxes he drinks has a new picture on it he wont drink it. You have many levels of challenges and I feel your pain. Good luck!!

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