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KyCyn

I Think My Dad Has Celiac, But Can't Get Doc's Help!

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My father is 77, but has been in perfect health all his life; gets yearly physicals, walks two miles a day, low blood pressure, low cholesterol... you get the picture.

Well, in April he became sick and was diagnosed with walking pneumonia. He took antibiotics and seemingly got over the pneumonia, but then developed very sore, achy legs, chronic diarrhea, swollen feet and ankles, and difficulty breathing.

After months of tests, he was finally diagnosed with polynueropothy in his legs, and the primary doc said one cause of polyneuropothy was celiac disease. Us kids starting researching celiac, and the more we read, the more we became convinced he may be suffering from this. In addition, my older brother has always had gastro problems and his legs had been hurting so badly he was wearing a brace. He decided to test it on his own, and went gluten-free; it's been three weeks now, and he says he feels like a new person; no brace, no gastro problems, and many other things that are going right that he didn't necessarily want to discuss with his sister - ha!

Anyway, since then, we have been literally begging the primary doc to do a celiac test on my dad. He refused, and said he didn't know enough about it, but sent dad to a gastrologist. The gastrologist actually told my father that IF he had celiac, the antibiotics he took for the pneumonia would have cured it!

Since then, they have sent my father to an infectious disease doc, a thyroid specialist, a blood specialist (who told us last night he thinks it's amyloidotis, which seems related somehow), and a cardiologist. Meanwhile, my dad has become so week that he was admitted to the hospital last week (which is EXACTLY what we told the docs was going to happen).

We've been told they will do the celiac test next week, but now we are concerned that too much damage has been done.

Can anyone give me ideas, encouragement, or ammunition for the docs? Us three kids (two bros and me) are meeting with the primary doc in the morning at 8am and we want to be armed - any help would be much appreciated.

Thank you,

Cyn

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I would INSIST that they do a blood test now and schedule an endoscopy. That is your right. They are probably continuing to feed him gluten which is making him more ill. You need to be an advocate for your father and insist and not nicely if that is necessary. Remember you can have a false negative blood test and the endoscopy can only confirm Celiac, it cannot rule it out. If the tests come back negative, then start bringing your father food from home that is gluten free and see if he improves. Your brother can help you with that as he is gluten free. Good luck and prayers are coming your way.

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