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Sick Again...d Bad!


Mrs. Smith

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Mrs. Smith Explorer

I havent been feeling myself for a few days. I had my 2 week massage yesterday. I am really sore, could not sleep lastnight, and today I have really bad D! I dont get it! I have been gluten-free for 5 mos. I started to feel really good, normal BM's, no pain for like 2 mos. Its like a friggin roller coaster. Im either really great or really sick. I did run out of acidophilis and digestion enzymes for a week and this all started. I got some again yesterday and took them. Does anyone have any advice? I feel like it's always something! I feel better but not as good as I would like to. Did anyone else have this roller coaster in the first year? Are my bowels screwed up? I also got some L-glutamine cause my friend in the nutrition dept at the health food store said its suppost to heal your bowels. Any info or advice or even words of encouragement would be great. Thanks! I feel like crap! :(


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ang1e0251 Contributor

I did have ups and downs in the first year. It was mostly do to my own stupidity. I would take for granted something was gluten-free and not check. Or I did something as simple as share jelly jars. I also had to learn that my body just doesn't like some teas or many alternate grains. I've been on a very low card diet and I'm actually feeling the best I have in a long time. Getting off the sugar has been a good step for me also.

I dont' know what to tell you besides listen to your body. It will tell you what it needs and doesn't need even if you really don't want to hear it. Sometimes I just didn't want to hear it.

Ahorsesoul Enthusiast

Digestion enzymes cause me the same symptoms as gluten. I won't take them anymore.

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    • Samanthaeileen1
      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? 
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      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
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      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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