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Celiac Since 2008, Recently New Symptoms. Help!


CarrieCeliac2008

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CarrieCeliac2008 Newbie

please help. I have no insurance anymore, so I can't see my gastroenterologist because I can't afford to. I was diagnosed with Celiac in 2008 and have felt healthy since I started gluten free diet. I try to stay strict, but sometimes I "guess" if I think something is gluten free and may be eating some gluten by accident. Three weeks ago I started having diarrhea, bloating, gas, and blood in my stool. I went to the ER and they gave me pills to stop the diarrhea. It works. But, I still feel full of gas, diarrhea, and bloody stools when I eat something that is 100% gluten free. I have recently started eating lactose free diet too. I learned that sometimes the two go hand in hand and possibly me not being a diligent gluten free eater maybe my villi are damaged and I am unable to tolerate lactose? Just ideas?? I have turned in stool samples to the hospital recently and they are testing me for parasites, CDIFF, salmonella, etc. I don't think its something like that. I feel like I am possibly eating something that doesn't agree with me? Please help! I haven't lost any weight, but I feel unusually tired. I am a mother of three and a Respiratory therapy student and I am exposed to a lot of sickness. I just need opinions or help from someone who is or has gone through something like this? PLEASE HELP!! Thank you so much if you are reading this. Love to all. xoxo


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dilettantesteph Collaborator

I don't know if this applies to you or not. At first I was fine with normal gluten free food. Then even the small amount allowed in it started to bother me. Maybe that is what happened to you. I do well with whole foods. Good luck to you. I hope you figure things out.

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      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
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    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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