I know I’ve been among the missing for some time and thought I’d try to update you all on what’s been going down. First of all, I’d like to take a moment to once again thank Craig, aka Mr. Peachy, for being a wealth of info and encouragement. You even took the time to email me and check in when it seemed I’d fallen off the radar and were worried I’d become over-whelmed, etc. Nothing like having good friends out there…even if we live thousands of miles apart!
Now, onto the newest developments. I finally dumped my arrogant and dimissive jerk of a doc and found another. She seems much more open to listening to my concerns and has even encouraged looking into some other issues that my previous doc, aka “Dr. Jerk”, kept pigeon-hole’ing as IBS.
She really seemed to have a hard time understanding why Dr. Jerk hadn’t looked closer when I came to him complaining of IBS-like symptoms, numbness in my hands/feet and ulcers in my mouth. She told me those symptoms could indicate Celiac Disease. She said she felt there were too many false-negatives with bloodwork and she didn’t want to put me through the nastiness of a scope and biopsy since she’s seen multiple cases where the intestinal damage was spotty enough that the biopsy missed it anyway. She recommended starting a gluten-free diet and charting what happened.
Well, sweet relief is what happened! After a month, the episodes of diarrhea and constipation stopped, I had a TON more energy, the numbness was abating and the ulcers in my mouth were gone. She said CD was likely at this point but suggested a gluten challenge and doing the scope. I made it only 12 days before I called her back and told her there was no way I could continue. I’d had two SOLID days and nights of diarrhea, intestinal cramping, and nausea before the numbness came back, I had a horrible headache that Tylenol and Aleve wouldn’t kick and my muscles and joints ached so bad I could have cried.
Since I couldn’t stay on the gluten long enough that a scope could be done (that would have entailed at least 3-6 months of gluten-induced agony), she recommended doing genetic testing. It couldn’t 100% confirm CD, but if I didn’t possess the genes it would rule it out and we’d have to look elsewhere for answers. The testing came back that I didn’t have the main genes usually associated with CD, but since I got 2 “minor” CD genes, one from each parent, she said she could understand my dramatic response to the reintroduction of gluten and felt confident in diagnosing CD without a scope. I’ve been gluten-free now since April 29 and my intestinal, numbness, energy and mouth ulcer issues have resolved…as long as I don’t accidentally “gluten” myself.
Nearly right away, my sugars started coming down so that I was seeing mid-80’s to mid-90’s in the AM. I lost 7 pounds, something I’d NOT been able to do before no matter how many calories or carbs that I restricted and I wasn’t having hypo feelings at 84 any longer when I had been having hypo feelings on gluten at 104.
In the last month, though, we’ve been seeing my AM BG’s slowly climbing back over 100 again, back to my previous 105-115 range. Granted, it’s not bad, but I can’t figure out why it’s happening. I’m eating just like I was, same gluten-free foods, etc., as when the sugars were down. Doc said she thought maybe the lower sugars were kind of like a “honeymoon” effect with the diet change and that I should continue to keep a good eye on them. If they continue to rise, especially the fasting AM BG’s, she said I should consider doing a GTT. We talked about the connection that CD has with DM but she did note that my CD genes aren’t the ones normally assoc. with Type I. Although, she added the caveat that genetics is in its infancy and we just don’t know enough about all of the different gene combinations that cause certain health issues. I guess that was just a nice way of saying that we’ll have to see just what it is that my body has planned for me. LOL.