nettiebeads

My husband has brought these to me to eat as a surprise sometimes. Yikes. Nice to find out now.

my hubby did the same. My problem is it is so hard for me to pin down my glutening because the reaction is rather mild and so much later, sometimes nearly 24 hours later. Well, no more Micky D's for me, period. No great loss, actually.

Annette

celiac3270, you're the greatest!

You're still healing. It depends on if you are totally, 100% gluten-free (no hidden gluten-free in foods, meds or toiletries), how long you were sick and your individual healing rate. I'm glad you are starting to feel better. Give it time and don't give up!

Annette

Yes, and sometime you just have to give in and let things run its course. I have had headaches where I take too much stuff for the headache and then end up upsetting my stomach and then other things happen.

Hope you're much better soon!

Annette

Mothers are like that - always keeping you guessing. Sounds like she's doing better. I hope she's in a good hospital. My mother keeps offering me food from her pantry - forgetting that after 9 years I still can't eat what she keeps in stock. Oh well. I guess they just can't see us as any different from before celiac disease.

Annette

Even the experts are in disagreement on oats. Some say that the pure, uncross-contaminated ones would be okay. Others say that the protein in the oats is so close in stucture to the gluten protein in wheat that it triggers a response in some of those with celiac. Not enough testing, blind testing, and double blind testing has been done yet to rule one way or another. Me, I stay away. I've found that even if you don't have a classic celiac disease response to something, you can still be making yourself sick. I miss oats, but I enjoy being healthy a whole lot more!

Annette

Loved your siggy!!! I have problems with mild UTIs whenever I eat too much sugar and stuff that's bad anyhow. Just my body telling me to be good, I guess. What the other ladies have posted here I've tried in the past and it works. Hope you're better soon!

Annette

I hate to say it, but what really REALLY matters most to these corporations is the bottom line. Period.

And I'm sadly not really surprised to find this out.

Annette

found this link on amazon...do you think its a scam? has me wondering

Open Original Shared Link

Sounds like someone taking advantage of (and making money on)newbies. I've been around for awhile and this is a new one on me. It's one thing to have links for someone to click on of their own accord, but it's another if she's promoting a membership for info that she may have well gotten from this site or others like it! Stick with us, sweetie. We're free (but not easy )

Annette

The only problem with Margaritas is that you have to watch which mix is used -- some companies "thicken" it for restaurants so that they can add a LOT of ice and it will go further -- don't know if they're gluten-free. My philosophy -- just take life with a grain of salt, a slice of lime and a shot of tequila.

My kind of woman!! (But I have vague memories of being poured into the back of a friend's pickup truck to be driven home the last time I did shots)

I was there yesterday and found a brand called Asia. They have rice noodles and rices that list gluten free right on the back and the front says suitable for vegetarians and gluten free! I was so excited! Then I found that several of their Grandessa fries and other frozen items had gluten-free on them! I didn't have a lot of time but am wondering if more things have gluten-free on them? Just wanted to share this discovery!

That is so cool! Thanks for sharing. I don't know why I don't shop at Aldi's more that I do, it's just a little ways down the street from Wal-Mart in my town. I will make a mental note to start shopping there more.

Is maltodextrin derived from corn or wheat? Im confused!

I've read that in the US, it's from corn unless otherwise stated.

OKay, thanks to the new labling laws alot of foods that are labled gluten-free, now say stuff like "Processed in a plant with wheat" , things like mission corn toritlas, Amy's stuff, and etc.

How big of a deal is that in reality? I feel like theres a point like some one mentioned were whe will say "Processed on a planet where wheat is grown", heh.

I'm one who doesn't react right away to CC from minute amounts. It turns out that I do have problems with CC in the way of fatigue and a little brain fog; but it would be so minor that I would attribute it to work, family pressures and such. Since the labeling laws came out I've avoided products with the disclaimer, even though I would assume that the chances would be very remote that there would be a problem. (Like Great Value's frozen cauliflower. Why would there be wheat involved in that?) Anyhow, since then I've felt much better and have had more energy. It's a personal decision, but the healthier my body gets, the more I'll do to keep it that way.

Annette

Ok, beer, except gluten-free beer, is out. I never could drink beer (allergy to hops, probably) so I don't know if the gluten-free beer is any good or not. Any drink that is malt based is out. Distilled grain alcohol is safe, supposedly. The distillation process filters out the gluten particles according to different sources. I used to be able to drink any vodka, but lately that's been leaving me feeling not too well. Don't know if it's the grain or the fact that my liver is older now. You'll have to try for yourself. Rum and tequila are still in (yeah margaritas!!) I hadn't heard anything about foreign wines being off limits. So, Cheers and party hardy!

Annette

Have you tried the gluten-free diet? Has your RA dr. ordered the celiac blood panel? Just because you don't have the GI symptoms of celiac disease doesn't mean that damage hasn't been done. There are 200 symptoms of celiac and then there are those who are asymptomatic. If the bloodwork has been done, or if it isn't going to be done, why don't you try the gluten-free diet for 2 weeks and see how you feel - if there is any lessening of the fatigue and other lupus symptoms. It wouldn't hurt, and could actually help. Just a thought.

Annette

Have you seen any improvement at all? Is your dh still getting exposed to gluten through toiletries or supplements? If she has tested positive for casein intolerance, then milk and milk products must be removed from her diet also. Enterolab has had nothing but positive responses from other posters at this site; many trust the lab a whole lot more than their own drs. And what suspicious symptoms do your family members have? And remember, if one family member tested positive, then all the first degree relatives have a much higher chance of having celiac and casein intolerances also.

Annette

I think you have a very good Rhuemy. Celiac is called the great imitator of diseases. It sounds like the supposed lupus hasn't acted or progressed like it normally should. And also, Celiac is closely identified with other conective diseases ie RA. People with untreated celiac have malabsorption issues and that is what leads to many misdiagnosis - the body isn't getting the nutrients it needs to be totally healthy and so manifests the lack of proper nutrition in many many ways. So if indeed you have celiac (and I wouldn't be surprised) the gluten-free diet is the only answer. No drugs, prescriptions, or other things are necessary. But what is great is that the body will begin to heal itself as soon as the offending item (gluten) is eliminated. I'm sure you wouldn't mind an end to the crushing, debilitating fatigue you've experienced for most of your life.

Keep us posted, please!

Annette

I am finding this to be a VERY interesting topic as I am South Asian and everyone that has gotten tested in my family is negative for it.

Must have been a northern european in the woodpile somewhere!

Be sure to check all of your toiletries for gluten. A lot of the lotions that promote soothing have oat in them. Quite a few have wheat, wheat germ or wheat starch. Did you get yourself a dedicated toaster? I now have one, a Christmas present from my MIL. And check ALL labels. Since the new labeling law went into effect I'm finding that lots of things I thought were safe are "made in a facility that also processes wheat"

Give yourself time. It takes awhile for the damage to occur, so likewise it takes time to heal. And since everyone's physiology is different, everyone has different healing rates. Just keep at it.

Annette

oh that's right! she partnered up with the books for Dummies people and yep putting out a Gluten Free for Dummies book!

That's fantastic!

Okay so for about a year I have had a possible Celiac diagnosis based on skin rashes. They biopsied me and said its 99.9 % sure its celiac. I have had a LOT of trouble staying gluten free...in fact I haven't. What will happen to me if I don't find a way to do this? I need some motivation. I have periods where I don't have a rash and periods when its so bad I can barely stand it...like now...the Dapsone helps but I want to have another baby and I don't want to be taking medicine everyday. Can someone give me some motivation to do the right thing and cut the wheat out!

Well, I think a lot of us look at gluten as if it's poison. And to us, it might as well be for all the good it does us. And it is hard to stay 100% gluten-free when the reactions are not noticable. But believe me, your body will turn on you at some future date and let you know you shouldn't have been eating gluten for lo, those many years. I ignored the little four letter word malt in cereals and alcoholic drinks for years, thinking that it wasn't hurting me. But then I developed neuropathies - face was numb, hands were numb, I'd get out of bed in the a.m. and it felt like I was walking on stumps. After joining this board I finally realized what I was doing to myself and cut out EVERYTHING I could find that contained gluten and have felt better than I have had in years!!!

So, you can find out years from now that gluten is bad for you, or you can go gluten-free now and think healthy happy baby thoughts. (you do want another baby and be healthy enough to enjoy him or her in later years, don't you?) Think of going gluten-free as preventive medicine.

Annette

As far as I can figure with extensive research, the "celiac episode" is a rumor started by a Celiac on the Fox's house message board as "a cool idea". It then ballooned off into rumorville, and here we are.

I am a huge house addict, its the only thing we watch where BF is not allowed to change the channels during commercials ( I get very upset) and believe me, I looked. It would be cool, but I don't think we can count on it.

Elonwy

But now I'm hooked on the show. Those amazingly blue eyes of Hugh Laurie. Sigh.

Has anyone experienced any problems with their eye sight when they get glutened? Lately I have been experiencing about 20 min. of tunnel vision after an accidental glutening event. It is kind of scary.

No, no tunnel vision, but when I get glutened it is almost impossible for me to do my counted cross stitch. My eyes don't seem to focus as well

Annette

Hello, This is my first time using a forum and hope I get it to work. Question...Is there a CURE for Celiac disease? There is a doctor advertising on this site. His name is Dr. Skip Snow. He says, in his site that he can and does cure Celiac disease, as well as other diseases. It will cost me a lot of money, that I don't have, in order to try him. Has anyone had any experience with him? Any success or failure to report? Thanks, Bob

I agree with Carriefaith - need empirical evidence, or published articles in the New England Journal of Medicine or JAMA. But I'm from Missouri so you have to show me. My brother and his wife tried to get me on Reliv with claims of people who were "cured" by the nutritional supplement. I figured it out by looking at the ingredients - one was L-glutamine which really heals the intestine. I take that ($4 as opposed to $70)

and it has helped me get through accidental glutenings immensly. My mother is one to believe everything she reads and spends money she really doesn't have on supplements and literature. And almost all of the claims she reads is anecdotal. No empirical evidence. Also, a big tip off here is - MONEY!!! does this Dr offer a money back guarantee? Also, where did he get his diploma and in what field? Anyone can call themselves Dr on the internet. And anyone can legally be a Dr, but have the degree in any field, just so long has the person has passed his/her PhD. So, sorry to dash your hopes, but while celiac cannot be cured at this time, it is very livable and best of all, no prescriptions! Just a major radical change in diet, and your life is just about as normal as everyone else's!

Annette

Here's a link to an article from today that cites the # of celiacs in the US incorrectly. Nice. Although its great to get info out there, it is bad journalism to publish incorrect stuff.

Open Original Shared Link

You're right, it does contain misinformation and outdated info. But I'm happy to see more awareness about this disease.

Annette