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rosetapper23

Member Since 16 Nov 2008
Offline Last Active Apr 18 2013 07:40 PM
*****

#806909 How Bad Is Cheating On The Gluten Free Diet Periodically

Posted by rosetapper23 on 27 June 2012 - 07:51 PM

Geez....those "doctors" don't know what they're talking about!! They are most definitely NOT experts, and you shouldn't listen to them.

I'm a perfect example of why you should never, ever ingest gluten. I, too, thought it might be okay to cheat occasionally, and I even read an article that said that after the small intestine heals, some people could actually eat gluten again. Was I wrong!! I cheated a few times by eating pizza...and after the third time, I became unable to absorb iron and had to have weekly intravenous infusions of iron. My boss wasn't too happy that I had to have a three-hour lunch every week in order to receive the infusions, and I had to use my vacation time. Eventually, I was diagnosed with cancer and the chemo miraculously healed my small intestine so that I no longer needed iron infusions (but no one wants to go through chemo, believe me).

A few years later, I accidentally ingested some gluten, and I ended up suffering from malabsorption of Manganese and Zinc so that my tendons and ligaments became floppy. As a result, both of my feet fractured a week apart. It took me eight months to figure out which nutrients I wasn't absorbing, and I spent that time limping around with a walking boot on the foot that hurt the most.

So, if you think you'd like to end up like me, sure, go ahead and cheat. Once the gluten is out of your body for a while, your immune system becomes strong again and reacts violently to the smallest ingestion of gluten. Want to test this concept? Believe me, you don't want to go there!
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#801551 Contamination On Food Boxes

Posted by rosetapper23 on 07 June 2012 - 10:18 PM

I think you are very conscientious...and that your celiacs are all safe. Just my own opinion....
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#800320 Advice On Re-Glutening

Posted by rosetapper23 on 03 June 2012 - 10:30 AM

Okay, you're going to get varying responses on this. I'm in the camp that says that, as long as your blood test was positive, accept that you have celiac and cancel the biopsy. While false-negatives are common, false-positives are not so common. Leading celiac expert Dr. Alessio Fasano has stated in articles and publicly at conferences that if your blood test is positive, your symptoms resolve on a gluten-free diet, and the symptoms return when gluten is reintroduced, no biopsy is necessary. Biopsies used to be considered the gold standard; however, times have changed. Studies have shown that the accuracy of the procedure is based on the competence of both the surgeon and the pathologist. Also, sometimes the scope isn't long enough to reach the damaged area. Lastly, it's a hit-and-miss procedure, since the surgeon can't see the blunted villi and is forced to take random samples that may miss the damage. All in all, it's a straight-up gamble if you ask me. If you decide to go ahead with it, I hope you'll consider staying gluten free even if the biopsy comes out negative. There's such a high probability of your having an inaccurate biopsy, you should ignore a negative outcome, since your blood test was positive.

But, as I said, others will disagree. Only you can decide what's best for you.
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#798722 Dow Bread Enhancer

Posted by rosetapper23 on 27 May 2012 - 11:08 AM

IrishHeart,

No need to be afraid--I think we pretty much all share that particular opinion! It's funny, some of their other products are pretty good (crackers and lasagna noodles), but they just can't seem to make bread.
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#798536 Dow Bread Enhancer

Posted by rosetapper23 on 26 May 2012 - 09:52 AM

Triumph Dining's newsletter had a story on this yesterday, too. Kind of creeps me out that a chemical company like Dow would bother with finding a gluten-free substitute....and I sure hope that it really IS the result of vegetable matter manipulation and not something chemically unnatural involved. I did order a sample, though it looks as though the samples are really meant for companies and not consumers. If I actually receive it, I'll let everyone know what I thought of it. And, of course, if it also contains soy, I won't bother even trying it.
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#798181 I'm Going Bonkers Over The Diificulties Of Celiac Disease!

Posted by rosetapper23 on 24 May 2012 - 07:33 PM

I'm so very sorry that your life is difficult right now. You're right that having celiac in the U.S. garners very little assistance from the government. At a conference I attended five years ago, Dr. Alessio Fasano (a leading celiac expert) stated, "Woe to the American who has celiac and is poor." He said this because the food banks generally don't provide celiacs with gluten-free food, and the government doesn't subsidize our food as some countries in Europe do. There is a tax write-off, but you'd have to make enough money to justify filling out the long form.

Regarding your question on schizophrenia, you might be interested in reading this article:

http://www.celiac.co...Celiac-Disease/

My grandmother had schizophrenia, and now I wonder if she actually had celiac disease.

When it comes to gluten-free food, it actually is cheaper to buy natural foods (not processed foods) and prepare or cook your own meals. I can luckily afford gluten-free bread, but I rarely buy it because I no longer crave bread and choose to prepare/cook foods that are just naturally gluten free, such as eggs, salads, meat, etc. If you miss macaroni and cheese in a box, just let me know (by sending a private message), and I'll send you some from Trader Joe's. It's not expensive, and I would be happy to send some your way. I'm not wealthy, but buying it won't break the bank either. Just let me know....

I know that life is hard right now....but the future always holds hope and possible change. After following a gluten-free diet for a while, new horizons might appear for you.
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#795203 Honestly, I'm Stunned!

Posted by rosetapper23 on 13 May 2012 - 11:35 AM

I was diagnosed with celiac back in 2004, and I continued to have a weight problem regardless of following a gluten-free diet. It wasn't until last year when I read, "Primal Body, Primal Mind," that I finally found out what was causing my weight problem: I wasn't consuming enough healthy saturated fats and I was eating too much fruit and other carbs. Humans haven't evolved enough yet to digest grains, beans, soy, most dairy, and some fruits. I used to shun any and all fats because I figured that they'd make me fat, but we need healthy saturated fats to keep our brains and bodies healthy. Fats don't make us fat--carbs do because they cause a rise in insulin. You might try eating more avocados, nuts, nut butters, and organic butter and meats. The weight just fell off of me when I went on this diet (sometimes referred to as the Paleo diet), and the fat in my stomach area simply disappeared. I feel healthy and happy now, and maintaining my weight is easy. I know that the media and some health magazines bombards us with advice on going vegan or vegetarian, but these diets are contrary to what humans must eat to be haalthy. Of course, though, everyone is different, so I don't go around proseletyzing (sp?) about how people should eat....I'm just recommending this diet because it's worked for a number of us on this Forum.
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#795196 Undiagnosed Celiac And Gastric Bipass Surgery?

Posted by rosetapper23 on 13 May 2012 - 10:49 AM

Josh, almost everyone on this Forum understands where you're coming from--after we either figured out we had celiac or were actually diagnosed with it, we informed our families and especially targeted those relatives who we just KNEW had celiac. We thought we were saving them all from a lifetime of pain and suffering....but, you know what? They didn't want to hear that they had celiac, and they certainly didn't want to follow "that awful diet that so-and-so is now following." Rather than being grateful, they turned deaf ears towards us and hoped we'd just go away. Even those relatives of mine who realized that the many terrible symptoms from which they'd been suffering for years could probably be attributed to celiac just could not bring themselves to adopt the diet to feel better. I only bring up the topic of celiac occasionally when I see my extended family, because I don't want to drive everyone away. Recently, my uncle was sharing with me that he has horrible arthritis, headaches, dizziness, and night blindness. I just casually said that perhaps he should get tested for celiac the next time he sees his doctor. I doubt that he'll follow through, though. His sister (my aunt) looks emaciated and has hardly any teeth or hair left, even though she's only 65. Her son has told me that she suffers from terrible digestive issues, but all he has said to me is, "Oh, yeah....I'll have Mom look into that celiac thing." Of course, nothing ever happens or changes.

Many of us here on the Forum say that rather than seeing dead people, we "see celiacs" everywhere. We suffered so much from years of undiagnosed celiac, we just want to save the whole world. However, most people don't appreciate learning that they have a disease that will put a dent in their social lives. Nowadays, when I'm served a special meal at conferences and people at my table ask me why, I simply educate them about celiac. By the end of the meal, either people have self-diagnosed themselves as possibly having celiac or say that they know a relative who might have it. Once it becomes THEIR idea to explore the possibility of having celiac, I no longer feel like a know-it-all who is trying to impress my will upon them. This is something that people must come to terms about themselves--you can't change their thinking unless they're open to considering the possibility.

So, although it is mightily tempting to rescue your family members, you might stop bringing up this topic with them....and simply wait for them to come to you. As irritating and senseless as this seems, you and your family will be happier for it. You need to stop obsessing over something that cannot be changed--and, no, you don't need therapy. You just need to accept things as they are and go on with your life.

Believe me, over time things will get better. In my family, my son immediately accepted the diagnosis, but my mother took a year to accept that she had it because she didn't want to give up sourdough bread. My daughter refuses to get tested even though she's had symptoms since she was four; rather, she wishes to wait until a treatment is available. Someday when she wants to have children, though, she might change her mind, since infertility is common in young women with celiac.

So....good luck to you! And, please, consider taking a step back and only bringing up celiac if someone else brings it up first.
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#789500 Possible Rash From Gluten? (Pic Heavy)

Posted by rosetapper23 on 20 April 2012 - 05:57 PM

I, too, think that your son has DH--it sure looks like it! If you can't find a dermatologist who is experienced with biopsying DH (and even if they say they ARE), make sure that whoever you find to do the biopsy takes the biopsy from clear skin ADJACENT to a lesion. If a biopsy is taken from a lesion itself, it will result in a negative pathology. This is VERY important, and very few dermatologists know this. If the biopsy is positive for DH, your son has celiac....and there's no reason for further labwork or an endoscopy. Many gastroenterologists are unaware of this and may insist on bloodwork and an endoscopy. There really is NO need to do so, since a diagnosis of DH is a diagnosis of celiac disease.

Have you checked to see if the formula is free of both gluten and iodine? It could be that it's fortified with iodine. If so, that's not good for your son. If he has DH and you eliminate only gluten at first, the iodine in his diet will keep the lesions active. You'll only need to eliminate the iodine for a month or two, and then you can add it back in slowly, since it's an important nutrient.

Please let us know what happens--I feel so sad looking at the photos you've taken.
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#788268 Anaheim / Disneyland Gluten Free Restaurants / Products?

Posted by rosetapper23 on 16 April 2012 - 09:13 PM

When I visited Disneyland four years ago, I wanted to stay and live there permanently. It was like living in a gluten-free city--it was wonderful! When you arrive, simply walk up to the information booth and request the gluten-free food list. Almost every single restaurant offers gluten-free meals (pasta, pizza, hamburger buns--you name it!). I have never felt safer! Their staff is extremely well educated, and when you order a gluten-free meal, the head chef will appear at your table to discuss your needs very thoroughly. Even at the ice cream parlors, I was treated in a very special manner--they used clean scoopers and opened new vats of the ice cream flavors I'd chosen.

However, as far as gluten-free food at the nearby restaurants, I don't really know what to say. I live in California, but in the Northern part....and when I stayed in Anaheim near Disneyland, I ate all of my meals at the park. Hopefully, someone lives in Anaheim and will be able to answer your questions about restaurants and markets nearby.

By the way, I've been to Australia twice (my daughter lives there), and I'm very, very impressed with the way your country handles the whole gluten-free issue. A recent private poll that was taken on this forum indicated that many people agree that Australia is the best country to visit when it comes to eating gluten free. Truthfully, I wish I could emigrate there....but, alas, because I have a history of recurrent breast cancer, I could never pass the health exam to become a permanent resident. However, I plan to visit often! You're so very fortunate to live in such a wonderful country!
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#787256 Gluten Flam Pills

Posted by rosetapper23 on 12 April 2012 - 09:28 PM

This is a sham--I'm sorry. Currently, there is nothing that makes gluten disappear or get broken down if you have celiac disease. Now, if you're simply gluten sensitive, I don't know. Products have been cropping up for years stating that they can help us tolerate gluten better...but these claims are simply not true.
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#785124 Anyone Need Gluten Free Food - Cincinnati, Ohio?

Posted by rosetapper23 on 03 April 2012 - 07:33 PM

If you're unable to find enough takers, please remember that there are people with celiac who can't afford food who go to food pantries...only to find very little they can eat, even though it's free. Every holiday season, I package up several bags of gluten-free food and mark them as such before dropping them off at the Food Bank. Leading celiac expert Dr. Alessio Fasano once said at a conference, "Woe to the celiac in the U.S. who is unable to afford gluten-free food." He was referring to how our government does not feel an obligation to furnish celiacs in need with gluten-free food.
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#783671 Confused...

Posted by rosetapper23 on 28 March 2012 - 02:41 PM

Excellent responses! I just wanted to add that if your gastro-enterologist does a biopsy and the pathologist concludes that your biopsy is negative for celiac, this is very common. There's a high rate of false negatives for celiac biopsies, and the blame can usually be attributed to incompetence on the part of either the gastro, the pathologist, or both. Sometimes, though, the scope is simply not long enough to reach the damaged area. Since you have tested positive to celiac and it is extremely rare to have a false positive, you should still follow a gluten-free diet if the biopsy is negative. Assume that you DO have celiac and that the biopsy will let you know how extensive the damage may be (or it might not).
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#782431 New

Posted by rosetapper23 on 22 March 2012 - 10:13 PM

I would just like to add to the discussion that many of us with celiac cannot tolerate soy. You mentioned that you'd like to keep that in your diet....but you might wish to rethink that.
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#780741 Bunny Owners

Posted by rosetapper23 on 14 March 2012 - 10:05 PM

My kitties prefer a dry food that contains wheat, so I use a scooper--no contamination, as a result. As long as you don't physically touch the food, there should be no contamination.
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