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Gluten Free 9 Months Still Sick

jesimae

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Twinklestars Contributor
Twinklestars
Posted

I just read your thread and while I have no advice for you, I wanted to say that I hope you find out what is wrong soon. You sound very sick. I hope you're okay x

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jesimae Apprentice
jesimae
Posted
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All labs normal. What the heck? No anemia. B12 normal. Still waiting on porfyria. What is wrong with me?

Skylark Collaborator
Skylark
Posted

All labs normal. What the heck? No anemia. B12 normal. Still waiting on porfyria. What is wrong with me?

Oh, geez. Sorry you didn't get any good answers. I know how incredibly frustrating that is to KNOW you're ill but have normal labs because I went through it this spring.

Turned out my labs looked OK but I was still hypothyroid. I had to figure it out by reading thyroid books (I suspected it was thyroid because I have Hashimoto's). Maybe there are books out there on Addison's, lupus, and anything else that's come up in your Dr. appointments that you can use to figure things out. I would also look hard at the possibility of diabetes with the urination. Did they do a fasting glucose?

pricklypear1971 Community Regular
pricklypear1971
Posted

So is the pylori to see if you have the bacteria to cause stomach ulcers?

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    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      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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