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Going Downhill Fast


bartfull

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kareng Grand Master

Holy cow! I'm crying again. But this time it's because I found out my friends are organizing a fundraiser so I can get that MRI. I feel TERRIBLE about taking charity - I've always been one to give charity, not recieve it. But I feel wonderful knowing that my friends care about me so much. And it WILL be good to finally find out what this is - even if it turns out to be cancer. At least I'll know.

That's so nice about your friends!

If you are paying cash for the MRI, you might be able to get it cheaper. Someone paying at the time of service costs the hospital less than billing insurance companies or managing people making payments.

Keep trying to eat the things that aren't your worst foods. Not eating just makes you feel worse & messes up your digestion more.


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Jestgar Rising Star

Holy cow! I'm crying again. But this time it's because I found out my friends are organizing a fundraiser so I can get that MRI. I feel TERRIBLE about taking charity -

It's not charity when it's from your friends. That's called love. :)

bartfull Rising Star

And oh, how I love them all back! As crummy as I feel, I think I am the luckiest person in the world!

UKGail Rookie

Bartfull - just wanting to send my best wishes, and hope that you can get through this soon. I'm thrilled that your friends are helping you with the doctor's fees.

lynnelise Apprentice

I hope you are able to get your MRI asap! You are so lucky to have such good friends! Don't hesitate to let them help! I know if I had a sick friend I would want to be able to ease their burden! Keep us posted!

cmoore Apprentice

"Candida" perhaps. Candida overgrowth can cause a countless number of issues including food intolerance's. I would research that as well.

This sums up what I have read myself .... I say this as I reel from my own issues and Im trying to sort it all out myself.

Gluten intolerance and issues with Candida can overlap and be devastating, unless your aware of BOTH and actively address both problems.

For what its worth.

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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. 
    • JoJo0611
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