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Surgery Done


jennyj

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jennyj Collaborator

I had my surgery July 18th. They ended up removing 18 inches of small intestine and two very large tumors. The tumors are benign but they are concerned because there are several other small tumors that they did not take out this time. They cleaned up the area around the two so they think they got the worst. It has been a very slow recovery. I am drinking Ensure until I can eat more. The most frustrating part was while in the hospital the food, not it's taste but because they did not know what gluten free was. I could only have small bites but they would send cookies, bread, fried chicken, gravy. My daughter stayed with me and went to the nurses station and raised a little ----. Thanks for the thoughts and prayers. I've really missed this site.


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jerseyangel Proficient

Welcome back, Jenny :)

I'm glad to hear you're recovering nicely--I hope that continues.

Hospitals have a lot to learn about Celiac patients--I had surgery earlier this year, and even the nurses agreed it was best for me to supply all of my own food.

Take care.

Lisa Mentor

Hey Jenny,

Glad to have you back with us again. You have been through the worst, so everything else is a down hill slide.

A speedy recovery!!! :)

darkangel Rookie
Hospitals have a lot to learn about Celiac patients--I had surgery earlier this year, and even the nurses agreed it was best for me to supply all of my own food.

I'm amazed hospital dietitians don't know anything about celiac disease. That's pretty sad.

confusedks Enthusiast

I can second that! They are terrible about celiac. I am glad you are doing better though. '

Kassandra

ravenwoodglass Mentor

Glad your back and hope you recover soon.

gfpaperdoll Rookie

Glad you are back & doing better after surgery.

Hospitals lease out the food operation to the lowest bidder. I would not eat any of it even if I was not gluten free. Most of it is awful & totally unhealthy.

I remember ... ;) when schools & hospitals had actual staff that cooked real food from the local supply of meat & veggies. Oh we used to love our lunch room ladies & their wonderful cooking. Of course each school was different depending on where you lived in the U.S. Now it seems everything is the same government issued cheapo trash food...


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    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
    • Scott Adams
      I guess using "GF" instead of "PL" would have been too easy! 😉
    • trents
      I was wrong, however, about there being no particular health concerns associated with high total IGA: https://www.inspire.com/resources/chronic-disease/understanding-high-iga-levels-causes-impacts/ So maybe the physician's "borderline" remark is relevant to that.
    • trents
      Sometimes that is the case but what is curious to me is the remark by your physician about being "borderline". I assume he was referring to the total IGA score but it just seems like an irrelevant remark when it is on the high side rather than being deficient.
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