GERD, C, and the rest of the horrors..Question!

Lesley · Post by **Lesley** » Sun Nov 06, 2011 2:45 pm

Been eating beef and potatoes, peeled, parboiled and roasted. Applesauce and cinnamon with a little brown sugar to take the calcium powder. Turkey bacon for breakfast rather than beef.
I have been putting a little olive oil on the potatoes to crisp them, and eating a few potato chips cooked in safflower and/or sunflour oil, not in soy based oils.

Should I cut out the oils as well and just eat the beef and potatoes naked?

My entocort hasn't arrived yet, though I had notice of shipping a week ago.

Post by **tex** » Sun Nov 06, 2011 3:12 pm

Usually, a small amount of safe oils shouldn't cause any problems. Of course, larger amounts of oil can act as a laxative, but the amounts you're talking about should be safe.

Your package is probably sitting in Customs. Since package volume shouldn't be all that high, this time of year, surely they will get it out in a few days. I have no idea which port it's in, but I've noticed that it always takes longer to get both mail and packages from Texas to and from California, than anywhere else in the nation.

Tex

Lesley · Post by **Lesley** » Sun Nov 06, 2011 3:17 pm

Thanks Tex. I thought it shouldn't be a problem, but I am not really getting better, so I figured I would ask anyway.

I just fell and really bruised my knee. I was getting ready to go to the pool before the sun disappears much, earlier now because of the time change. (can ANYONE explain to me, satisfactorily, why the do this?).
The poor balance is partially due to my back and the "heaviness" of my leg, but it also leads me to agree with you tex. Blood test results or not, I think I do have Sjogren's syndrome. Every symptom fits.

Post by **tex** » Sun Nov 06, 2011 3:47 pm

And you can have gluten ataxia without having any diagnosable disease. It's often one of the first symptoms to present.

Tex

Lesley · Post by **Lesley** » Sun Nov 06, 2011 5:12 pm

I have read that, but I am off gluten, and have been for - about 6 weeks now, I think.
Also, my leg weighs a couple of tons, so my foot sometimes just drags and trips me up. I fall pretty hard like I did today. I didn't get to the pool and my back is incredibly painful. So that problem just gets worse.

Tomorrow it's going to rain..Swimmin' in the rain!

sarkin · Post by **sarkin** » Sun Nov 06, 2011 6:26 pm

Lesley,

I believe I may have had (mild?) gluten ataxia. I feel really lucky that it has been improving - finger tingling and numbness, too, which I now realize was most likely gluten-induced peripheral neuropathy. Maybe no one else would think anything of the balance issues I've noticed, and I'm sure a doctor would pooh-pooh it. I feel lucky that it has improved with GF diet; some kinds of neuro issues can be slow or difficult to reverse. You may have been accumulating gluten damage to non-digestive systems for years - I believe that's true of many, many of us. The heavy leg/dropped foot may even be connected somehow.

I realize that I see the shadow of gluten sensitivity in almost every corner. But all too often, it's actually there. Both the numbness and the dizziness have returned every time I've been glutened.

Some things probably take much longer than others to start to come around. I hope you see some benefit in this area, too, when your other symptoms settle down.

Lesley · Post by **Lesley** » Sun Nov 06, 2011 6:45 pm

*The heavy leg/dropped foot may even be connected somehow.* No, they are the result of a back injury, 2 failed back surgeries causing a lot of scar tissue on the nerve.

I had polio at the age of 3, and had bilateral serial casting for 6 months at age 11, followed by years of PT. I do have an imbalance in my body, and I had always blamed my balance problems on this. It may have been exacerbated by a gluten problem.

I think I might have to do the gene test for gluten, because my youngest son has some stomach issues, and I am wondering if he is also gluten sensitive.

Gabby · Post by **Gabby** » Sun Nov 06, 2011 8:01 pm

Hi Lesley,
I'm sorry you haven't seen much relief since going on your bland diet. That's rough.

You "sound" a little better than you did a few weeks ago meaning that through your writing it seems like your spirits are a little lifted. Is that accurate?

Will you be having a doc supervise your taking of the Entocort?
I know finding a good doc can be difficult. Do you have one who you feel helps you?

Hope you can get out to the pool tomorrow. It's a little cold here in AZ too. Brrr.
Gabby

Post by **tex** » Sun Nov 06, 2011 9:07 pm

Lesley wrote:I have read that, but I am off gluten, and have been for - about 6 weeks now, I think.

Gluten-induced neurological issues don't always resolve quickly. It can also be permanent - I have a lot of permanent gluten damage in the form of ataxia, and peripheral neuropathy.

Tex

Lesley · Post by **Lesley** » Sun Nov 06, 2011 11:49 pm

Hi Gabby,

No relief yet. Mood varies, depending on how I feel at any given moment. Right now, lousy, but it always seems to be worse in the evening.

I will let my doc know when I get the meds, and have him supervise me idiot that he is.

Thanks, Tex!

MaggieRedwings · Post by **MaggieRedwings** » Mon Nov 07, 2011 9:51 am

HI Lesley,

I, for one, had to stop taking Entocort due to balance issues. Please be careful when taking it and just keep aware that it can do this and since you have existing issues, I would not like to see you fall again.

Sara - gluten to me lurks in most corners too.

When I got glutened over the weekend the imbalance was there as well as numb fingers.

Love, Maggie

harma · Post by **harma** » Mon Nov 07, 2011 11:27 am

Leslie not to make your list of food even more limited, but are you sure you can digest tomatoes very well? Its a nightshade and quite a view here (including me) have problems with nightshades, especially peppers and tomatoes. Also be careful with any thing to spice up your food. I remember in my first 9 months of the diet, everytime I was trying to give a bit more flavour on my food, wrong idea. So ever since than my biggest appetizer is still applesauce. Try to eat as plain as possible, sometimes it can make a difference. And of course, especially the gluten part, to see real results in some cases you need a loooooooong breath. I saw the first real improvement after about 9 months diet (no more bloating), later a clearer head followed and lately the fatigue is getting much better (after two years of diet). So six weeks can be really short to expect results.

I hope your medication will arrive soon and will help to achieve remission soon.

Gayle · Post by **Gayle** » Mon Nov 07, 2011 11:59 am

Leslie,

You have been having quite some array of difficulties here, some of which (probably not all?) seem to be neurologic in nature.

Now here today I see that you have said

I had polio at the age of 3, and had bilateral serial casting for 6 months at age 11

Wondering ... Have you ever been worked up by neurology for "Post Polio Syndrome"?

Gayle

Zizzle · Post by **Zizzle** » Mon Nov 07, 2011 12:08 pm

Just a word of caution about turkey bacon - not all brands are gluten free. Many use wheat in the "natural Flavors." Look for a brand that is actually labeled GF.

garina · Post by **garina** » Mon Nov 07, 2011 3:05 pm

Zizzle, after reading your post about turkey bacon, I think that is why for the last two days, I have had bad D. I thought I was being watchful of sneaky wheat, but I didn't catch it. It was Butterball turkey bacon. The ingredients say just "natural flavors", but they do not elaborate on the kind. Thanks.

Lesley, I hope you feel better soon.

garina