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Unknown Diagnosis


Miss5

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Miss5 Newbie

Two years ago, my mother, myself and a couple of friends of ours drove up to San Antonio for a weekend during the summer. On our way up there, we stopped at and a buffet on the side of the road and we sat for lunch. The special that day was Catfish and so my mom added some to her plate and we all enjoyed our lunch. Within the next couple of hours she began breaking out in mild hives. As time progressed her hives became pretty severe. She went to the emergency room that night and they put her on prednisone.

Ever since that day that she was in the E.R she has been suffering from extreme fatigue, very bad pain in her joints, brain fog, and sudden weight gain for no apparent reason. The pain in her joints fluctuates depending on the day. From what she tells me, some mornings when she wakes up and gets out of bed, her pain is so severe that she has trouble getting around. She's been to several doctors already and they have all had trouble diagnosing her. We read an article about celiac disease and pretty much all of her symptoms matched up with the symptoms of celiac disease. A couple of weeks ago she prepared to start a gluten-free diet, but then she got her results back for her blood tests and and they showed up negative for celiac so she discontinued the diet. I'm writing because my poor mom is exhausted and frustrated. I wish there was something I could do for her but there isn't. I feel helpless. I don't know that she has celiac, or non-celiac gluten intolerance, but I thought maybe I would look into this condition a little further before ruling it out completely.

She went to see a gastroenterologist this morning actually, and from what I understand he was very rude and sarcastic with her. I'm so bothered by this because it's a doctor's job to help his patients; not laugh at them and make them feel stupid. He told her there wasn't much he could do without taking a look so he sent her for a colonoscopy as well as some other procedure that I forget.

I would just like to hear, maybe, someone else's experience with this issue and see if anyone has other suggestions. I just want her to feel herself again.

Thank You

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ang1e0251 Contributor

I'm sorry the doctor was so rude to your Mom. That is just unacceptable in a healthcare professional.

Did he schedule her for an endoscopy? That is the correct test for celiac disease. They need to take multiple biopsies in different locations for the testing to be accurate. As for her blood test, Ask for a copy of the test results to be sent to her. Post those results here. Sometimes the reading can be borderline but they don't tell you that.

If they read her endoscopy as negative, also get a copy of the test results sent to her. You never know. If they really are all negative, she could still be gluten intolerant. There is no test for that condition except a gluten-free diet.

Get all the test results, then decide on a course of action. You can come back with the results and ask more questions. We're glad to help.

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