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Saturday, May 21, 2011

May sucks

May has not been a fun month. I decided to go back on gluten so I could do some preliminary blood testing. Almost immediately I started getting sick again. I have felt so miserable the last 2 weeks. Last weekend we went and signed up at the gym, too. This will be a good thing, but right now I feel so terrible I can't do much and what I can do makes me feel nearly dead. I have been so very very tired and sore and, quite honestly, moody. I'm back to bottomed out where I have to plan everything I do and any little surprise can completely ruin my day and my mood. I hate it. This is not me and I was so much better for the 3 months I was off gluten. I already decided that, regardless of what they blood test says (which might not be entirely accurate anyway since I've been off it for 3 months and only back on for a few weeks..) I will be going 100% gluten free forever more.
Then, 2 weeks ago I got an email from my mother. She had gone in for her annual mammogram and they found a "shadow" and wanted to do a biopsy. That was done and they sent her right off to a specialist and she is now scheduled for surgery to remove the tumor and test lymph nodes, etc to make sure the cancer hasn't spread. We are all hoping that this was caught early enough that the surgery (and then about a month later she will start radiation for a few weeks) will catch it all and we can be done with this... I worry, however, as I know she's already got autoimmune problems because of her MS.
Anyway. So I'm stressed out and feeling horrible and I decided I'm sick and tired of being sick and tired and I'm done with gluten. (Ok, will be officially done tomorrow since I've already planned tomorrow's dinner and would be difficult to convert at this point..) So this afternoon I took the test. (It was an at home self test from a company in Canada. I had to import it via my mom in Idaho because for some reason, Canada doesn't want to ship to Alaska...) It is suppose to be fairly accurate, but, you have to have been on a "normal" gluten-filled diet, and having been off gluten for 3 months and only back on for a few weeks, I might not have built up enough anti-bodies yet. I had planned to be on for 3 weeks, but I really just couldn't take it anymore.. I tested negative for celiacs. But that doesn't mean I don't have it. There are various levels of reaction and I might not be damaged enough yet to actually be positive. (It is, sadly, one of those illnesses that many doctor's don't acknowledge until serious permanent damage is done to your intestines, and sometimes not even then..) Anyway, I know I have some level of gluten syndrome. The HUGE massive difference in my health, energy levels, emotional stability, etc between when I'm on gluten and when I'm off of it.. it really is amazing. I'm sure that if I left things alone and kept eating gluten I'd eventually get damaged enough to be considered fully celiac, but, seriously, why should I have to?
Doctors don't tell people to keep eating sugar and we won't treat you or ask you to change your diet until you're diabetic, why should celiacs be any different?
Just making the decision to stop the gluten test has lifted my spirits and improved my mood. I've had too many dizzy spells, too much weakness, too many aches and pains everything else. I am so looking forward to feeling better again.
And hopefully my mom will get good news next week, too.

Saturday, May 14, 2011

1 week

I've been back on gluten for one week now. I hate it. Everything that had slowly gone away the last three months, things I'd never even noticed or put together to link with this.. all of it has come back and I hate it. I've been making a list of everything as it comes back, because, this time, I'm noticing. The list is very long, nearly fills 2 columns in my steno notebook/diary. The worst are the lack of energy, the loss of coordination, the fuzziness of mind, clouded thinking, inability to remember things I know I should know, the aches, the pains, the emotional roller coaster..
I know I need to be back on this stuff for several weeks before I can do blood work, but, honestly, I'm this close to calling it quits. I know that, regardless of what ever the tests say, I am never eating gluten (knowingly) again unless there is some serious life or death thing going on.. cuz it is not nice to me at all.
And, honestly, I've used this as a chance to splurdge a smidge and have all of those "oh no, I'll never have ______ again" foods I first worried about, and I've been surprised, they just really didn't taste as good as I'd remembered them being.. Ok, a few things still are, but, for the most part, I was loosing my taste for them, so that will be good for me. If I survive this challenge anyway.
At least Hubby is home now to help out while I slowly fall back to pieces. And he's already told me that he wants the "new, gluten free" me back, and he's only been home a day now.. so this will help encourage him to support me in this, and maybe I can use that support to help get him eating better when he's home, too.

Saturday, May 07, 2011

Back on wheat - for now..

Well, I've decided I need to do some testing to maybe confirm this whole celiac thing. I've found a home test kit that I can order and do myself for much, much less then I can at the doctor's office.. so I'm going back on wheat for a few weeks then will take the test. If it gives me a positive result, I will be discussing biopsy options for later this year with my doctor. Though, honestly, I'm pretty sure that I have it. It just, seriously, makes too much sense. And if the doctors are willing to make do with blood tests, then maybe I won't need the really pricey biopsy (and 3 months back on wheat before that test...) I will also likely be contacting one or two of the local labs around town to see if any of them will run some other blood tests for me to get it all official and in my charts, etc.
But, it means that right now, I'm back on wheat. Tonight was my first jump back in. I've decided that I'm mostly going to stick with only doing wheat in the evenings, and see how that goes. I want to still be able to function during the day and all. I've been pleasantly surprised this evening, in that I haven't reacted nearly as badly as I have in the past when I've had accidental dosings. This is actually a good thing, as it shows that my intestinal tract has been healing somewhat in the 3 months I've been off of it. Things are coming back though, just slower and not as intensely as I expected. Haven't had the headaches yet, though the body aches are starting to creep back in, and there was some straight up nausea and bloating after about half an hour. Thankfully those seem to have subsided again. It's going to be a long couple of weeks, and part of me really hates that I'm doing this to myself. But, must get an actual answer about all of this. Either way, if not needed for testing, I'm going to be going and staying gluten free. The testing and medical confirmation would be nice, as it will allow me to claim some of the extra costs of going gluten free as medical claims, but, honestly, I personally already know that this is the answer I've needed. This lies at the root of everything (or nearly) that I've been having problems with for years. I've been doing a lot of reading, and a lot of symptom tracing and I know when things started to get bad, I know that all of this is linked, and I know that it's all connected to problems with gluten. If I've got celiacs or if I'm just gluten intolerant, that doesn't matter. I have my answers, and I have hope for a lot of things now that I'd more or less given up on. Now I just have to convince my doctors :)