Well, I was off gluten for about 4 - 5 weeks, then got the letter to go for my endoscopy and go back on gluten. So I've been back on for just over 2 weeks.
My family doctor diagnosed me back in January based on my symptoms, family history and the tell tale positive blood panel. She was going to order an endoscopy to check on damage due to the years of reflux but it can take months to see a specialist in Northern Ontario. Sure enough, the appointment notice came back for June 11. That was six months away, but no mention of going back on gluten.
Then in late February, I got a new letter... the specialist (GI) reviewed my case, scheduled me in for March 21 and was directed to go back on gluten. Almost like a reprieve, eat the foods I would forever have to stay away from!
The first few days were horrible. I suffered heartburn and indigestion, bloating, gas,a fullness from my throat to my bowels. Blah. Then the joint pain started, the stairs are again hard to navigate normally, step by step again. I want to sleep all the time, but when I'm in bed, I toss and turn and start the nightsweats. My face has returned to the vibrant red that I was so happy was gone! Headaches are oh so wonderful!! Geez, I'd almost forgotten about that numbness that showed up once in awhile on my cheek! And the list of symptoms goes on... I made a comment to my husband that I can't wait to go gluten-free again but I vowed to perservere until the endoscopy.
HOWEVER, I went out of town last week and forgot to take my iron pills. I was still eating gluten foods but my stomach felt somewhat better. Still some bloating but a lot of gas, heartburn and indigestion, but is less intense. LOL there are times I'm afraid to walk or move suddenly for fear of a gas slippage, thankfully so far it's only happened when I've been alone or only in front of hubby ! I haven't taken the iron pills since last week but am wondering if maybe they've been contributing to my intestinal discomfort. In the past, I've taken them with food, without food because I suspected a correlation. I keep wanting to take one, just to see but I'm afraid of getting that awful intestinal feeling again. I can tolerate the lessened intensity of the symptoms because I know it's only temporary until my scope is done.
All other symptoms are getting worse though, like the joint pain. And for some reason, even being on gluten, my bm's have changed. I have been a sufferer of constipation. Now I am going a lot, not diarhea, but loose(more foamy), urgent and not pleasant aromatically! This is gross I know, but when I have a bm at work, I am embarrassed and hope no one else has to go after me... and I am always multiple flushing to clean the residue from the toilet bowl.
I don't think being off gluten for just over a month will show significant healing because I went years believing something was wrong based on my deteriorating health, but doctors could never find anything, nor would they even consider I was celiac...weight gain isn't celiac related, so they said!
I'm hoping my scope shows villi damage and nothing else wrong! And maybe tomorrow I'll try the iron pill and take it from there.
And that's just me needing to share, discuss, vent. Hubby must be getting tired of me going on and on about this "celiac thing" and I think I need to "talk" with people who understand, can relate.
And for that I say thank you! Thank you for this wonderful forum and the excellent information and sharing of experiences! This forum has become my reading material... Who needs "Fifty Shades of Grey" when this is better reading for us celiacs?