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Please Help...so Tired Of Pain


candi1008

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candi1008 Rookie

I have had abdominal pain in the lower left quadrant for about 6 years, since I gave birth to my son. The pain is pretty much constant, but gets more unbearable after I eat. I will be constipated for about a week or so, and then have diahrea for a few days. I had a laparoscopy done in august of last year, and they removed adhesions from my pelvis to my liver, but that did not help the pain at all. I am always tired, and there are always keytones or keyotes, or whatever they are called in my urine...my blood tests have all shown a high white blood cell count, but I have been to doctor after doctor, and specialist after specialist, and none of them have any idea...recently a friend mention celiac disease to me...do any of the symptoms sound like that is what it could be?


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mftnchn Explorer

Hi, and welcome to this forum. I think more people will respond who have similar symptoms. The alternating constipation and diarrhea is pretty common for celiac.

In all your tests have they done a celiac panel? Also it does not sound like they did a biopsy of the small intestine. These would be the standard tests for celiac.

However, many people here had negative tests, but found a strict gluten free diet did help tremendously.

This is a wonderful supportive place to ask questions and find answers.

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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? 
    • Wheatwacked
      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.
    • 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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