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NatashaCatherine

Could This Be Celiac?

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Hello everyone!

I'm super new here, so thank you for any advice that may potentially be given! My daughter is 15 months old. Overall a very happy girl! My grandmother has Celiac disease, my Uncle was born with it (diagnosed at 13 months after severe malnutrition), his two children have been diagnosed. I have been given the blood test in which came back negative. I'm not too sure if it was accurate as I was told to go gluten free (prior to testing). I was gluten free for almost 2 years before going back on gluten (for 3 months) to be tested. In my heart of hearts I feel like the test was wrong. I've had so many problems with gluten since I was 14 (now 25) but I do not want to say I'm Celiac if I'm "not". My daughter has had no problems whatsoever with gaining weight and her height is in her age range. Always a good eater. But, she always has loose stools (right from birth). Not watery. But constantly mushy and not formed. Only formed/firm stools she gets are about 10% of the time in which are either "nugget like" or one lump that looks all pieced together. Recently (past couple months), she's been having VERY foul smelling stools. Not all the time but some times it's unbearable. She also bloats daily (will attach a pic). I feel like bloating is above normal (but would like opinions on this as she does not have the "typical" thin limbs). Might be a bit off topic but she also gets sick quite a bit. In the past 15 months she's already had 3 eye infections, 1 ear infection, croup, and just recently she's on antibiotics for a chest infection. She does not go to daycare and she has no siblings. I know her immune system is possibly suppressed. I do want her tested regardless since this gene does run in the family and I do have my own problems with gluten but I just wanted to share and possibly get input. My family doctor (her pediatrician) basically makes it seem like I'm overreacting, which also drives me crazy lol

 

Thank you all once again! Sorry for the novel!

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Obviously, it could *not* be celiac, but I wouldn't be at all surprised if it *is* celiac. My daughter had soft foul-smelling stool at that age. Her celiac panel came black negative, but later came back suggestive and her biopsy was suggestive but inconclusive. The doctor says she probably has it but he can't really diagnose it. She has done so well on a gluten-free diet. 

 

Your daughter's bloating definitely concerns me. I know doctors always see worse, but that doesn't mean that it's healthy and normal. Trust your gut. It may be a very long process, but the validation in the end was so worth it to me.

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Hello and welcome :)

Obviously no-one here can diagnose you but much of what you say is strongly suggestive of celiac or gluten sensitivity. As you doubtless know celiac testing process is often not straightforward. Your 12 week challenge is the usual timescale doctors recommend, I think I managed 8 and didn't get a positive result. But that doesn't mean gluten isn't a problem for me. There's some info in the forum faq and there's a collection of hopefully useful links etc here also.  Given you've been gluten free once already you really just need to decide whether you want to persist looking for a diagnosis or not. There's nothing to stop you going gluten free without one  and whether you call yourself celiac or not isn't really important when compared to feeling well.

As for your daughter: 

On 5/12/2017 at 4:52 AM, NatashaCatherine said:

My family doctor (her pediatrician) basically makes it seem like I'm overreacting, which also drives me crazy lol

I think your concerns sound perfectly valid and completely understandable. Ample evidence for a blood test. If I were you I'd collect all the data / observations you detail above and condense it as much as possible into a series of bullet points. eg:

  • failure to thrive
  • digestive issues
  • bloating
  • frequent infections

etc. and go back to your doctor with them and a well worded closed question. 

Given my daughter has exhibited a, b, c, d and my familial history of celiac I'd like to exclude celiac by blood test.

If she won't agree get a second opinion. Don't be fobbed off, your daughter's health is too important.

Best of luck!

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