Another flare needing advice...........

[mbeezie]

Ginny,

Sorry I missed this thread (I seriously can't keep up witht he increase volume of posts). Wondering how you are doing??

I noticed that your flare started right after you increased to 5000 IU of vitamin D. I did not tolerate the 5000 IU tablet for some reason (Freeda like so many others here use). I am wondering if you are intolerant to your new supplement?? Just a thought.

Hugs,

Mary Beth

[sarkin]

Tex, btw - did you catch this, in which Dr. Peter Green lists tingling as a celiac symptom?

http://www.cbsnews.com/2300-204_162-100 ... ncol;lst;2

It's pretty vapid overall... BUT

Tingling in the hands or feet is a symptom of celiac disease. The sensation is evidence of a nerve condition known as peripheral neuropathy.

I realize you already know this, but now maybe your neurologist will know it, too, some day.

Beth,

If you are malabsorbing vitamins, I think it's highly unlikely that you'd be getting excess folic acid - hopefully you can get healthy, stabilize your symptoms, and settle on a maintenance level of supplementation, and start your family. One thing that's considered important is to get other B vitamins as well (maybe you could take a B-100 complex for now, and drop back to B-50 plus folic, once your symptoms subside? Just a guess... you will do your own thinking, of course).

Best of luck on your road to healing, and in your dreams of a successful and healthy pregnancy,

Sara

[tex]

There's another board I'm on for pregnant women (I wish I were one of them!) that talks about some pretty serious dangers with too much folic acid. Who to believe?

You can't really go by the RDAs for vitamins which are promoted by the government, because the panel that sets those recommendations has a record of ignoring expert advice. Last year, for example, they totally ignored the overwhelming consensus of opinion of their own advisory board, and left the RDAs for vitamin D virtually unchanged, (they only raised them by a trivial amount), despite all the expert testimony recommending a large increase). Too many of those guys have industry ties that influence their opinions, based on financial considerations, rather than health considerations. They apparently don't believe in preventive medicine - medical treatments after the fact are much more lucrative.

Unless you have compromised kidney function, the risk of toxicity from folic acid is low, because folate is a water-soluble vitamin, so it's regularly eliminated from the body through urine.

Adequate levels of folic acid are especially important prior to and during pregnancy, for anyone with an IBD.

http://www.pregvitfolic5.com/prescribe_folic_acid.html

I've been taking that hi-dose B-12, B-9, B-6 supplement, (Metanx), every day, for over 2 years now, and so far I haven't seen any ill effects from it - only benefits. In October, my doctor and I plan to check my B-12, folate, 25(OH)D, etc., levels, just to see where they are these days.

Tex

[tex]

I realize you already know this, but now maybe your neurologist will know it, too, some day.

Let's hope so. Apparently, most neurologists consider celiac disease to be a disease of the GI tract, so it isn't even on their radar.

Tex

[nancyl]

Ginny,
I am hoping by now that you are feeling better and had a good visit with your GI doctor.

Tex,
I got a lot out of your post here about meat and potatoes. I too had to change my thinking about making sure I get enough veggies and having veggies with every meal. A couple of weeks ago I decided not to worry about the veggies or fruit. I do get a half of a banana in my daily smoothie and some strawberries, but decided that for now I can live on meat, occasionally fish, and baked, roasted, or mashed potatoes until things heal. GF, DF, SF, EF pancakes in the morning or GF cinnamon rice chex. A Lara bar here and there, pumpkin muffin or zucchini bread. I will worry about the weight later. The way you explained about getting enough carbs, protein, fats, etc. from eating these few things sure made me feel better. I'm just going to "not worry" about it any longer. I can live on meat and potatoes.

Nancy