Sarcoidosis

[Emme999]

Hello. Is anyone familiar with Sarcoidosis? I've read the NIH document and the one here at Celiac.com, but I'm wondering if anyone has personal stories that might mean more to me.

My dad has been in the hospital for the past few days - at first they thought it was acute pneumonia (they had to life-flight him to the Idaho hospital from Yellowstone ) - but because it wasn't getting better after all of their efforts, the doctors now are considering that it could be Sarcoidosis. He's having a lung biopsy in the morning. Apparently, the CT scan showed all sorts of stuff in his lungs.

After I read about it - and the possible correlation to Celiac - I (again!) became furious with my dad's internist who told me (first of all) that it isn't genetic, and then came back with negative test results (tTG). I've convinced my mom to have the hospital test him again and (thankfully) they did that today. The results aren't back yet.

Is it possible that he could not have celiac disease - but have a wheat allergy that causes the same problems as celiac disease? His mother is a self-diagnosed Celiac - though she'd never heard the word until I'd told her that I'd been diagnosed with it. She's just always knows that she can't eat gluten. (Though she still eats oats.. but that's another topic..)

Anyway - things aren't looking so good for dad He might not make it through this one. He's Bipolar, hypothyroid, etc, etc. - so many connections to celiac...

He's also having heart problems, feeling like he's "drowning" and falls asleep mid-sentence because he is so exhausted. Plus - he's been hallucinating.

If anyone can offer any empathy/understanding/explanation - I would be deeply grateful.

Thank you.

- Michelle

[jnifred]

I am new and just doing research at this point because of my family history. Although I am cutting out gluten as much as possible from my diet and my boys, anyway......your post caught me off guard. My dad was very sick and they said he had sarcoidosis, but of the brain not lungs. My husband was in med school at the time and researched what he could but what the docs where saying and what my hubby was finding didn't mesh with my dads symptoms, so we never had much faith in the diagnosis.

My dad was at the V.A. hospital in St.Louis which is just about the worst hospital in the U.S. and he rarely saw the same doc. It was awful. My dad had other issues, but never actually went to a doc until he couldn't see while driving home from work and managed to flag someone down who was able to get him an ambulance.

I had not read anything so far relating sarcoidoisis to celiacs, where did you find that???? I have some form of Rhuematoid Arthritis, been have "bowel issues" for a while, exzema/psoriasis, and other things mentioned in here, also have been dealing with TMJ for a while and have noticed jsut tonight that is it has been much improved the last few nights, wondering if there is a correlation there also. My mom and her mother have severe bowel problems, I am 100% convinced this is what my Grandma has.

I would be very interested to hear more of your story. I hope your dad is doing better. Mine died 7 years ago and we still don't have answers.

Jennifer

[Aprildncr]

My brother and I both have celiac's disease and because of that both of my parents were tested and tested negative...my dad however did have sarcoidosis...he had sarcoidosis of the heart...he developed this at the age of 35 and ended up needing a heart transplant almost 9 years ago...the doctors still dont know what caused it but we feel as though it relates to mine and my brother's celiac somehow.