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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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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