NeuroTalk Support Groups - Am I expecting too much?

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- - Am I expecting too much? (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/69487-am-expecting.html)

Am I expecting too much?

I was diagnosed as gluten sensitive in Feb. 2007. I went gluten free March of 2007 and got my life back. Before I was diagnosed I had bathroom issues, fatigue, and cog fog. This was mild to severe and I never knew what the next day would bring. I also had pain, tingling, numbness, and swelling all of which were on the right side only of my body most of the time. This too varied from mild to severe.

When I went to my dr. after being GF for one full year I commented on some lingering symptoms. He told me it takes two years to heal completely so give my body more time. While everything is much, much better than it was two years ago I think most things are slightly worse than they were say six months ago. It seems like I was virtually symptom free then and now I'd say some things are mild to moderate. Bathroom issues remain a constant non issue but the rest seems slightly worse.

The only food sensitivity I know I have is gluten. I don't knowingly cheat on my diet. The possible consequences just aren't worth it to me. I also have Raynaud's which seems to like people who have problems with gluten.

So here are my questions- Could I have some permanent neurological/ rheumatological damage? Could the increased intensity by a sign of another health issue like lupus (just using that as an example) heading my way? What else could be going on?

I go back to my dr. in April. If things don't get better before then I plan to start a symptom log about a month before my appointment. I know he wants to do some lab work at that time so I don't see a need to call now with my concerns. Or should I?

Any opinions will be greatly appreciated. I thought once I healed my symptoms would vanish completely. Maybe I am expecting too much.

so hun,
question?? for you...
is numbness/tingling, cogfog, and fatigue all part of sxs of being gluten sensitive?? just curious..you know me undx one...hehe hugsss and good luck, sx log book is good idea..hugss,sarah

In my case yes. Celiac symptoms vary from person to person and can mimic many other diseases. (It takes an average of 13 years to get a correct diagnosis.) I didn't see an improvement with my cog fog until the second year. I don't know if it was so gradual it took me that long to notice or if it took that long for the fog to begin lifting. My cog fog was never really bad just enough to scare me at times.

WeaveHerr...have you had your B12 level tested? Many of us celiac/gluten intolerant's are also B12 deficient. Ask to have your level tested before starting B12, just to see what the level is. If it is anywhere below even 1000, then start taking B12. I started out at 1000 mcgs 4 yrs ago, building up to 3000 mcgs. I never had my level tested before taking B12...I was having a hard time getting the doctors to listen to anything! I wish I knew what my level was before taking B12, 3 years ago, I tested at 1237, while taking 1000 mcg, last June, I tested at 1016.

I have double DQ1, subtype 6 genes, which are considered gluten intolerant and neuropathy genes. B12 is not an instant fix, it takes time for nerves to heal, and at times, healing nerves hurt as much or more than dying nerves. I slowed my progression significantly, and even have some nerve healing going on. I used to be quite a seamstress, and my hands had gotten so bad I couldn't sew for even a few minutes...now, I can sew again.

Also, you may have some other intolerance or intolerance's. I have several...I eat no grains anymore. For some people, going gluten free is all they need to do, some of us are not so lucky.

Feel free to email me anytime.

I've probably had my B12 level checked but I don't know what it is. I took just about every test they could throw at me in the four years it took to find out I was gluten sensitive.

What puzzles me is it seems like I was doing better a few months ago but I can't think of anything I'm doing different. When I started the diet I got better very very slowly and now it seems like I am very very slowly going backwards again.

A new intolerance? Three years after I went gf, I found out I had a soy intolerance, then corn, then nightshades...need I go on. Have you cut out dairy..some can't have dairy for a while. After 8 yrs, dairy is bothering me some.

Try eliminating something for a few weeks and see if you feel better. Dairy is often the first to go, yet I didn't have to give it up, then usually soy is the next in line for bothering people. Often times, soy lecithin is ok...soy oil isn't.

Do you always get copies of your blood work? I always ask for a copy of every test, and I save them all in a folder. Maybe you can look it up.

Yes, some damage can be permanent or semi-permanent.

Also,

Not only might eliminating dairy be prudent, but there can be metabolic problems associated which can necessitate augmentation with food supplements.

Jaspar

Deb- I never bothered to get copies of test results because I never dreamed the headache this would become. I love my dairy cheese but use lots of soy milk on my cereal. I've read they are often a problem for those with gluten issues. I do hope I'm not sensitive to something else.

Jaspar- My family doctor told me it takes two years for nerves to heal. That explained to me why my rheumatologist said give my symptoms that long to go away. I'm supposed to take a multi vitamin and extra vitamin D. I remember for a while and then I forget. I'm in forget mode right now. I know I felt this way though when I was taking them.