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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
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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