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So Confused

wsieving

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wsieving Contributor
wsieving
Posted

I am so confused and frustrated right now. I just do not understand what is going on, and I am so worried that we are not going to find out. DD has not had watery diarrhea for nearly 2 weeks now. I know, I know, not the end of the world, but it is making me second guess what is going on with her. I mean, she had this for months, now suddenly not even pasta will give her diarrhea and it always would before. Her stools still aren't normal, they are very loose and wet looking, but no diarrhea.

Yesterday we went to get her on WIC b/c DH is on work comp, and we will take help where we can until his physical therapy is over and he can go back to work. Anyway, they weighed her and she has lost weight again and is now below the 5%. Her cheeks are still rashy, still dark circles under her eyes, still has swollen lymph nodes in her groin, but the watery diarrhea has seemed to disappear. Does this mean that Celiac may not be the problem? The same foods that seemed to make her that way before just aren't doing it now. I am just so darn perplexed. Still another week and a half before she sees the GI.

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ShayFL Enthusiast
ShayFL
Posted

No that DOES NOT mean gluten is not the problem. She may have "healed" some while gluten-free (even for a week or two). Enough to change her reactions. But it could still be doing considerable damage.

If you are going to the GI, you should not have taken her off of the gluten because even though she is eating it now, enough "healing" might have happened to get a NEG on tests. The tests will be useless unless you feed her LOTS of gluten for a good 3 months before tests.

You really only have 2 choices: Keep feeding her LOTS of gluten and schedule the tests 3 months out (and btw in children test are notoriously inaccurate so even with this you might get a FALSE NEG). Some kids are told no Celiac until they are around 8 or more years old. Then they get the dx. OR they get dx when they develop Type 1 diabetes (related to Celiac). You could also ask for tests NOW and then retest with a heavy gluten 3 months.

Your child is not thriving.

If it were me, I would go 100% gluten free for a good 2 - 4 months (no cheating) and see if she starts gaining weight and those other symptoms go away. You would then have your answer.

If NOTHING changes during that 2 - 4 month trial, then more tests are in order.

How long did you try gluten-free diet with her?

crunchy-mama Apprentice
crunchy-mama
Posted

I am sitting here thoroughly confused as well. Luke still has watery stools, but only sometimes. It only happens after gluten is consumed, but not always after it is consumed, processed foods seem to be easier on him- go figure. This is so very frustrating. It makes you feel like you are insane, literally insane. I so wish there was more spent on testing research. We finally decided to do the enterolab that way I don't have to worry about convincing , it may not be the gold standard, but at least we will get a few answers instead of more questions.

feedmykids Rookie
feedmykids
Posted

Poor kiddo! Don't rule out any other food allergies! May people with celiac also cannot hav soy or dairy. My kids all have multiple food allergies and on DD with Celiac as well. It took us a long time to figure it all out. Also be sure you check the ingredients list on EVERYTHING she eats. GLuten may be in the flavorings, spices, food starch, caramel coloring, malt flavoring, etc.... I hope she is feeling better soon!

wsieving Contributor
wsieving
Posted
  • Author

We haven't gone gluten free yet. That is why I am so confused. Granted, the past couple of weeks our meals have a lot less gluten in them than usual. Not really on purpose, just how the menus worked out. So we really expected to have quite a reaction over the past couple of days because we have eaten a lot of things that have always bothered her before. All of her other symptoms are still there, just no watery diarrhea or diaper rash. I'm so perplexed by this.

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