xmlns:b='http://www.google.com/2005/gml/b' xmlns:data='http://www.google.com/2005/gml/data' xmlns:expr='http://www.google.com/2005/gml/expr'> My Other Life: June 2014

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Wednesday, June 4, 2014

Celiac Disease and Salicylate Sensitivity Diatribe (Wish I Could Figure Out How to Combine My Blogs)

I need to figure out how to put all my blogs under one blog. Anyone that knows how please chime in. I want one home page that then leads to the line of posts on Home/Remodeling, Landscape/Gardening, Sewing/Knitting/Painting/Crafting, and yet another one on Gluten-free and Salicylate Sensitivity together. Yeah I have been doing SOOOOOOOOOOOO much better since going completely and strictly Gluten Free. BUT then I had 2 days last week where it was same old, same old. Now I realize I could have gotten some gluten without my knowledge. But I also stumbled on to websites talking about Salicylate Sensitivity and diet. DIET? What?

Yes, I have Samter's triad asthma, nasal polyps and aspirin/NSAID sensitivity. I used to go through the family size bottle of ibuprofen for headaches and neck pain a little too fast. And by the end of medical school my sinuses and nasal passages had to be roto-rootered. I had nasal polyps, overgrown turbinates and deviated septum. I had a sinus infection pretty much all the time for over a year. And while I had allergies to cats growing up, now I was allergic to everything. I developed narcolepsy because apparently if you can't breathe through your nose you can't get deep restorative sleep. I was always on antibiotics and frequently oral steroids, which made me unable to sleep and psycho. So I saw ENT and was roto-rootered!

It was not a pleasant experience so when a few years later I started having increased nasal congestion again I panicked and went back to the ENT. He said you're staying off ibuprofen right? Huh? I think I vaguely remembered him walking out the door and saying you might want to avoid aspirin and ibuprofen. But that was it. Keep in mind that was 1993. Then when I returned to see him again probably 1999. So I said not really was I supposed to? Yeah if you don't want to do that surgery again. And try this nasal spray. I took nasal steroids until 2013. Yes 14 years. I really didn't want that surgery again. And I avoided all NSAIDS. My nose has stayed open. But I developed hypothyroidism, osteoporosis, early menopause, and still had wicked irritable bowel syndrome-chronic diarrhea and chronic fatigue.

I diagnosed my mom with Celiac Disease in 1999 or 2000. But then I sent her to GI who did upper and lower endoscopy, CT scan and the whole GI work up again for third time. And yes, the GI doctor  couldn't find a source of bleeding to explain her chronic iron deficiency anemia. Did a single biopsy of her proximal small intestine that did NOT show villous atrophy. So despite horrible osteoporosis that pointed to a secondary cause and unexplained iron deficiency anemia told her you don't have Celiac. So she said great I can still eat wheat. I said NO you can't. She listend to them of course and now she's 4'10". She started out 5' 4". About 5 years ago she developed hypothyroidism also and seronegative Rheumatoid Arthritis. What is that? It's when your hands look just like RA but your Rheumatoid Factor in the blood is negative. What do I think it is? Celiac disease associated autoimmune arthritis. But no one listens to me.

So I get my second, or maybe it's my third bone density after going through menopause at the early age of 42 and I've lost 14% of my bone density from my spine. JUST LIKE MY MOM! My Vitamin D level is 12 during the summer after being in the sun all weekend and despite sunscreen having a light sunburn. I'm now also hypothyroid. I'm also HLA DQ2. If you're HLA DQ2 or DQ8 your risk of Celiac goes from 1 in 110 to 1 in 33.

I'm not waiting until I am less than 5 feet tall to test positive for the Celiac antibodies like my mom then for GI to tell me I don't have it. Oh one of my cousins kids have Celiac as well. So back to how this started. I went Gluten-free and going great. Then last week for day and a half I have terrible diarrhea again. I don't know how I landed on a page about salicylate sensitivity and food but I did. So then I hear people with salicylate issues often have trouble with pineapple and berries. That is so me. Berries and Kiwi make me break out around my mouth. Pineapple here is ok but when I'm in Jamaica or California or someplace where it's super fresh after eating it for a few days my stomach is so torn up I can't eat anything. Unfortunately it took me 8 trips to Jamaica and once to California to figure that out. I kept thinking it was just something in Jamaican water or food. Then when it happened after a week in San Diego and they had fresh pineapple every day for breakfast I was like ah-ha!

So I found this list of foods and dang there are too many on it.

Oh boy I wish they would invent that pill meal substitute! I used to be a foodie. Now I'd take a pill and then just once a week I would make something fantastic from scratch that would agree with me and be fine with that.