NicoleAJ

I'm on predisone for a mysterious viral infection that caused swelling of the spine. I hate it. Not only have I gained a few pounds, but it makes my tongue go numb, and sometimes my eyes don't open on their own--I need to force them instead. It also makes me feel loopy and nauseous. The doctor wanted me on higher doses but I coaxed him into weaning me off and seeing what happens. We'll see. I really hate the way it makes me feel, so I'm hoping this spine swelling goes away on its own. I'm going to the doc tomorrow, so we'll see.

Hi Mike,

Sorry I've lost track of the thread and of the question you asked. I don't change my diet because I haven't noticed any difference with a change in diet.

My parents live in Miami Shores, but I live in PA. Let me know if you start a group in Miami because I'd like to attend when I go home to visit them in the summer and over holidays.

The post that follows relates to the actual question posed originally and is not intended as fodder for a debate.

Carla, I think that your idea of having a second chalice is a good one. Do they keep it on the side table or does it go on the altar as well? I used to receive the wine, but then we got a new priest that would break the host over the chalice and brush the crumbs from his fingers into the wine. I stopped receiving communion then and haven't received it since. Of course, in those cases I'd often feel awkward about sitting in the pew (while fit to receive the host, spiritually). Once, my friend's Irish parents were sitting next to me, and I explained to them before mass why I wouldn't be receiving the host. It was so sweet when a few months later my friend's mother sent me a newspaper clipping about the low-gluten hosts.

I don't have a strong relationship with this priest or parish (their politics sometimes get in the way of their theology, unfortunately), so this is why I'm not inclined to make special requests. But when I do move elsewhere in two years, I'll likely have more parishes around to choose from, and once I find one that I'm comfortable with, I'll likely try your second chalice method. Certainly, when I get married, I'll want to receive communion without wondering if I'll be suffering from cc at the reception.

The first time I ate there I loved it and had no problems whatsoever. The second time I ate there I thought I was glutened, but I got the same thing as my boyfriend, and he got just as sick as I did. It must have been food poisoning because we eat Mexican food all the time as well.

Does anyone know about their shepherd's pie. I was told in the past that it was gluten free and did not get sick from it, but the last time that I went they said that it contained flour rather than corn starch, so it is not gluten free. I was wondering if anyone knows if they changed their recipe because this used to be a favorite of mine.

I've actually eaten them without problems in the past. Do you have any other food allergies?

Don't assume you don't have Lyme just because a test came back negative. It's just like the specialty labs for celiac. Not all labs are created equal!

If you are in a lyme endemic area like PA then you really need to be tested through Igenex Lab in CA.

go to www.igenex.com and/or Open Original Shared Link for more information. [go to the Flash Discussion for help. ] Don't trust the CDC for the correct information. Hard to believe, but it's true.

I can give you tons more info if you want it. I was misdiagnosed for a LONG time and Lyme has taken alot from me. I don't want the same thing to happen to others. It can destroy your life if not caught early.

I agree!! I have been slowly eliminating meds over the past two years, following treatment for Lyme disease. I have found a natural supplement which has changed my life and helped me get rid of at least 7 different drugs!

Now after finding that gluten is a problem for me as well, I hope to eliminate some more!!!!

Get after that gluten-free diet....It ROCKS!

I certainly hope I was not misdiagnosed as you were. However, the doxycycline has done nothing to help--I've just continued to get sicker and sicker, so the doctor believes that it is viral rather than bacterial. He thinks I caught a virus that has caused my spine to swell, strangling some of the nerves in there.

Lyme disease is carried by ticks. If you get bitten by an infected tick, you'll often have some type of rash. Over time you will develop headache, fatigue, nausea, swollen lymph nodes, etc. It can become very serious, so it's important to catch it early. Here's the CDC website dedicated to lyme disease.

Open Original Shared Link

I was diagnosed with proctitis through a colonoscopy. Though I maintain a gluten free diet, my GI did believe that there was a link between my celiac disease and the proctitis. My treatment has been 1000 mg Canasa suppositories prescribed by my doctor. Proctitis is a chronic disorder that will recur throughout your life, so each time I get it (I can usually tell if there's blood visible on or in my stool), I just take the suppositories daily for a week or so and it goes away.

This is strange. I'm having similar symptoms. I've had a migraine since last Monday (not yesterday but the week before). My joints and muscles in my neck, shoulders, and back hurt as much as they did the day after each of the two concussions I've had during my life. In addition, the lymph nodes on the back of my head are extremely swollen. I've also been sleeping at least 15 hours a day between nightly sleep and naps. The doctor tested me for lyme disease (since I've been camping in PA), and did a CBC and inflammation test, but these have all come back normal. I'm on some serious antibiotics, but I just keep getting worse every day. If you find out what is wrong definitely let me know. I have another appointment on Thursday (the third in two weeks). If these symptoms sound familiar to anyone, please let me know.

I'm so happy to hear about the rice pizza--it's so good, and definitely makes me feel less deprived when my friends are all ordering out for pizza to watch a game, help someone move, etc. I just tried the mac and cheese last week with no problems and absolutely loved it. Do you all have to pay $7.50 for the pizza? It seems a bit steep to me, but I always bite the bullet because it's so good. However, if I could find it cheaper somewhere, I'd be a happy camper.

In all of this, don't forget Boar's Head bacon. It is premium bacon, and it says gluten free in large letters across the back of the label.

Many of the Haagen Dazs ice creams are gluten free. If you call them directly, not only will they mail you a gluten free list of all their products, but they also include several coupons, which is really helpful because it is a pricey ice cream.

If you have a Wegman's grocery store around you, their in-house brand of Authentic corn tortillas are listed on the bag as gluten free, and they test their products for gluten. I've never gotten sick by eating them.

I'm not sure if you're near a Wegman's grocery store, but they always list whether their gluten free products with a small G in a round circle on the upper right hand corner of the front side of their in-house products. I believe that all of they're yogurts are gluten free (and they're less expensive than yoplait).

Dear Heidi,

I don't think I can add to all of the great advice everyone has given here, but I will emphasize that it will get better. Also, unless you are going to a nutritionist that specializes in celiac, then he or she might not know all of the ins and outs of the diet. I had this experience, so I got a bit of misinformation before I knew any better. Use the nutritionist's guidelines as a starting point, but be sure to do your own research as well. It's not a horrible disease after some time, but it is one that requires that you be proactive.

By the way, I'm also 26. I was diagnosed exactly two years ago, and I feel sooooo much better than I did two years ago. If you need any advice on how to live gluten free in your mid-twenties, feel free to PM me.

Nicole

I agree with tarnalberry that the rotation diet is probably most relevant for those who have several food allergies and intolerances. I only have celiac and an allergy to arrowroot (makes my throat close), and I try as much as possible to eat different foods so that I don't get bored. Each week I'll eat a serving or two of chicken, one or two varieties of seafood, one or two varieties of beef, and a serving of lamb, turkey, or pork. I mix up my green vegetables and my fruits often but I would never waste a package of blueberries by letting it spoil before I could pick them back up again. I'd imagine that you'd have to take a lot of supplements to remain on a rotation diet because if you can't drink milk (if you're not lactose intolerant) and eat cheese, yogurt, and other dairy often, then you might just not get enough calcium. The only thing that I haven't ventured into is the less common grains, such as quinoa and millet. Does anyone have any suggestions about how to integrate those into the diet?

He probably should make the statement that oftentimes newly diagnosed celiacs continue to have symptoms for a long time after going on the diet (particularly because it's common to have difficulties figuring out all of the ins and outs of dietary restrictions, reading labels, and ordering at restaurants), but for me at least, I did have noticeable improvement after a few weeks--enough that I was commited to remaining on the diet without cheating. I was far from better after a few weeks, and I continued to have several problems for well over a year. Sometimes, I even have problems now almost 2 years after diagnosis. I think that medical professionals that don't specialize in celiac are often so optimistic about the diagnosis because they feel that it is simply a matter of a few minor changes. I'm certainly pleased that my diagnosis was celiac disease rather than other serious conditions they were considering that require extensive surgery and prescription meds. Ultimately, I usually don't think of celiac disease as something that runs my life, but at times (especially in the beginning) it can seem like a struggle to live with the disease daily and to know that you will have to do so for the rest of your life.

The upside of such a report is that it is less likely to prevent people from wanting to be tested for celiac. All press is good press, but a report for popular consumption that graphically described some of the less pleasant parts of this disease could potentially make people who have the symptoms decide to delay being tested, whereas a sunny and optimistic report could prompt people to ask for testing and then learn about the disease in depth after the diagnosis.

I agree. No one simply goes from having celiac to eating anything they want. It's a chronic, life-long illness, and her diagnosis could have only been from dietary changes--certainly 16 years ago the tests for celiac were less specific. She doesn't even name the suspect supplement.

I called Ocean Spray a few months ago, and at that time they did say that all of the cranberry juice varieties that they were selling (regular, cran-grape, cran-apple, white grape, diet varieties, etc) were gluten free. I've also never had a problem with their juice, so I'd say it's just fine unless you have other health concerns beyond celiac.

I'm always skeptical about the long term effects of new drugs, but I'd really love to be able to travel or go out to restaurants without constant fear of the most minor bits of cross contamination wreaking havok on my body and my life. So I'm hopeful but would also proceed with caution.

My school subscribes to NYT. Below is the actual paragraph the single sentence mentioning gluten came from. The article basically argues that the practice of 'grazing' on food should be reduced for American children. She believes that instead of feeding children several small portions of health foods each day that parents should give children a single cookie and milk at 4pm and somehow this will cure obesity. Even though she doesn't agree with grazing, she does believe that we need to reduce portion sizes (i.e. eating less and eating less often). Though the premise of reducing portion sizes is just fine, it seems to me that she really is ignorant about the fact gluten is not just a matter of being health conscious but that it is, in fact, a deadly substance to some and that a gluten-filled cookie and milk each day for a celiac, lactose intolerant child could actually kill said child.

"An excessive focus on ''good'' vs. ''bad'' food has its place, too, in the development of eating disorders, a much less frequent, but -- in the case of anorexia nervosa -- no less deadly problem than child obesity. And at the very least, the good-bad dichotomy feeds the joyless food-related fussiness (no gluten, no dairy, no pleasure -- ever) that's so prevalent among parents -- and that really ought, as a public mental health measure, to be targeted for extinction in the next generation."

It was just nice not to have to worry. I hope everyone gets the chance to go to that area because it's so beautiful--and now celiac-friendly as well.

Envirokids Koala Crisp cereal is also a type of crisp rice cereal, but it does have a slight cocoa flavoring to it. They also make crispy puffed rice breakfast bars that are not chocolate.