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Nantzie

Mini Gluten Challenge

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For about a day and a half last week I did a trial of seeing how I feel off gluten. I just ate naturally non-gluten stuff and some Tinkyada. I felt incredible. The last time I had that much energy was when I was a little kid. I felt like I was even able to concentrate better. I wasn't in pain. I just felt like a completely different person.

My most limiting health problem is my back (scoliosis) which makes it hard to do a lot of stuff. Anything that requires bending at the waist (even a little bit like changing diapers or dressing my squirmy little kids) just about kills me because of the scoliosis, or so I thought. When I wasn't eating gluten, I started not to have any pain at all.

I decided to re-introduce gluten in the middle of the day, just in case my good mood and better-functioning body was just a fluke and I was just having a good day.

Well, that did it.

After I ate the gluten, it was like my whole body tightened up on me. I never realized how much pain I was in before until it was gone. My whole body hurt, but especially my back. I think the tightening sensation, when it comes to my back, tightens just enough around that spot to make an already unstable area just chronically painful.

I also got a headache, which I had never noticed before. I literally am one of those people who "never gets headaches". Apparently, I've been wrong about that, and I just always had a headache. I just thought that that's how your head is supposed to feel, same with my body. :rolleyes:

I also got really emotional. Angry, depressed, anxious.

And then, when I laid down to try and go to sleep that night, I couldn't fall asleep. I've always had a hard time falling asleep because I get these "cycling thoughts" where you kind of just can't turn your brain off and relax. Well, that night, it was the worst it had ever been. Before, it was kind of just constant thoughts. That night, it was like the thoughts came at me like they were coming out of a machine gun. I also had kind of a sense of buzzing, almost, like my thoughts were vibrating. It was very, very, VERY weird. What's funny is that that's almost how it was when I took Vicodin once, and they told me not to take it anymore.

I also noticed that I was having a real hard time concentrating and even reading was (and is) difficult. There are a few science-y posts on here since then that I haven't even read because I can't focus on them, although it seems to be slowly getting better.

I remember my dad getting to a point where he couldn't even concentrate to do a crossword puzzle or read a book, and that was his "thing". Whenever you asked him what he wanted for Christmas or his birthday, it was always books. I'm the same way. An information junkie. So that part really scared me, but I'm glad that it seems to be getting better.

I also wonder if the reason I've had that type of insomnia, where I can't turn my brain off, is because I've always had a snack in the evenings. And it's almost always a gluten of some sort.

I also feel like my symptoms have gotten worse. Is that something other people have experienced, or is it maybe that now that I'm aware of it it's just more obvious to me?

It's been a very informative week. :wacko:

My husband, our kids, my in-laws and I are supposed to be going to a Christmas Fair this weekend. I'm seriously thinking about not eating gluten that day because I've been so quick to anger, and quick to cry, that I just don't want to deal with them. I'm actually getting along okay with my MIL now, but my husband is still being pretty condescending to me about all of this. When I got my Kinnikinnick box yesterday, and was just mentioning that I had tried everything and it was all really good, he just rolled his eyes and made a face like here we go again. So I just snapped at him - What?!?!!? And he said - nothing....

Grr....

So I think not eating gluten, at least just that day, is probably a real good freaking idea. For all of us.

:D

Nancy

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Nancy,

Trust yourself and the way that you feel. Tell your GI doctor that you would like the endo and a complete celiac blood panel done. Not sure how accurate a mini gluten-free challenge is, try it for a couple of weeks and see how you feel. Personally, I got my diagnosis from Enterolab after years of suffering, going to doctors that hadn't a clue and doing a gluten-free challenge on my own. As for the husband rolling the eyes, been there, done that, get that. Although, he isn't condescending, he still does not quite understand. Hang in there and seek out the answers you need by asking the right questions, researching and not giving up. It is very discouraging especially when it seems like no one understands. Hang in there and don't give up until you find your answer. Stick around here, lots of great advise from many people who have had similar experiances.

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Listen to your body! It sounds like you need to avoid gluten. You're husband doesn't live in your body, so it's not his decision to make, or to disrespect.

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Although I'm apparently not celiac (per my bloodtests) my experience in eating gluten-free is very positive so I will continue with it. My Dr said "if it makes you sick don't eat it!". My DH is very supportive. I noticed that my PMS is almost entirely gone. I was a raving maniac some months. I mentioned that I felt more even tempered and less bloated etc to DH. He admitted that he had noticed too but was afraid to say anything LOL - I guess he didn't want to jinx things. I definitely agree that mood is affected.

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I'm definitely going gluten-free. I have an appt with a GI in late January and getting the biopsy soon after. I got a referral from my doctor a couple months ago, but she said that the GI office gets all the insurance stuff and then calls ME to set the appt. Turns out they had a really old phone number of mine, so things got messed up. But everything is on track for that now.

Looking back over my life, I have definitely seen a pattern that at times when I wasn't eating much wheat, I felt and looked so much better. So I have been planning on going gluten-free no matter what was going on digestively. Because I just want to feel better, ya know?

And I totally forgot to mention how different my face looked. For the better part of the last 5 years, my face has taken on a fat, doughy appearance with a double chin. I thought it was because I gained weight and that's just how I look now. But as soon as I stop eating wheat, it's like my whole face shrank. No doughyness, no double chin. My eyes were brighter. Even my skin looked better.

I was just surprised at how quickly I felt better, and how many things I never thought of as symptoms that popped up.

:D

Nancy

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Nantzie--I know what you mean about your face and the changes in it when you are off wheat. Although I have gained back the 15 or so lbs. I lost when I was very sick pre DX, (I could do without it, but its a positive sign...) my face is leaner looking than ever. Its like you were writing about me--and about the skin looking better--I don't get the breakouts on my chin area any more. I noticed the same thing in my fingers, also. They used to always be puffy--now not at all.

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