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Ok, Was Back In The Emergency Room. How Do I Get Tested?


asickdaddy

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asickdaddy Explorer

Ok Saturday Night The pain grew unbearable. Stomach was absolutely agonizing the pain was just awful. I drove to the emergency room, they checked for all the emergency type issues like pancreas, liver, gallbladder, appendix. All via a blood test. Everything came back as completely healthy and normal. They did an EKG just to make sure, normal. Gave me a GI cocktail and some fluids and I started to get some relief. albeit it minor relief. Then was given 2 percocets and sent home. The first percocet allowed me to have a semi normal day yesterday. But I do not want to end up back in the ER. My primary doctor tested me when I was gluten free and of course it was negative. I did also have an endoscopy when I was gluten free and they never checked.

I have been eating gluten for months now so I could get tested again. Properly. However I do not trust that the doctors know what they are doing. I have tried to schedule an appointment with a GI, and its months before any are available. I can't keep doing this routine, and yes I need a diagnosis(multiple) reasons.

My question, what test do I request and how do I know the doctor orders the right test and that he knows how to interpret the results? I can't waste another $300 on the wrong test or a dr. screwup.


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kareng Grand Master

Copy this and take it to your doc. They might pay attention to it as it is from an actual hospital & doctor. Make an appointment with your primary care. You could mail a copy to your primary care doc & bring one with you. Highlight the specific tests you need. Ask the doc to write the specific tests on the lab draw sheet. Keep another copy with you when you get the blood drawn & ask them if these are what they are drawing. Many places have a "celiac panel" of standard tests they run and they aren't always what you need.

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Good luck.

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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
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      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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