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Spasms & Dr's Visit Outcome


BettyL.

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BettyL. Rookie

Hello,

I wished to thank everyone for all the help you have given me in the last few days. I am feeling stronger and ready to accept my fate. Your comments help me talking with my doctor about the surgery is planing on doing ASSP. My hiatal hernia has ruptured again. The herina is on the back side of the throat. This is the 3rd time. He said he has had failures after the first repair but never the after the 2nd repair. I was keep in the hospital the last time for 3 weeks because my stomach & intestines were jumping all the time. I was so doped up that I didn't realized they were doing that. I all knew I couldn't eat. He feels the rupture is occurring because of the spasms. I have been complaining about them since before 2002 and I was taken seriously. My husband asked about gluten-free medicines and the look on his. I could just feel that he suddenly understood what I am been talking about. Everything will be gluten-free and I will take my own soap, etc with me. I don't used body powder, so does any one know a gluten-free powder. The hospital used Johnson Baby Powder the last. He will put in a pain pump, a feeding tube. Four hours in surgery, 2 weeks in the hospital and if all goes well I should be better in about a month.

The first post I read was about bladder spasms and that may be the answer to my intestinal spams. I am doing do some research and will mention cystitis to my doctor.

I feel good about this doctor learning about celiac disease. My first surgery, I was told I needed more fiber as in grains. Yesterday, he finally realize what I was talking in regards to celiac disease. He does a lot of teaching in the area. This doctor cares for his patients you can tell when you talk with him. I couldn't have a better surgeon.

Betty


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trents Grand Master

I think most body powders are either talc or corn starch based.

Steve

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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.  
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