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Marilyn R

Member Since 10 Aug 2010
Offline Last Active Nov 08 2014 08:40 PM
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#651224 Celiac Cop

Posted by Marilyn R on 04 November 2010 - 04:04 PM

I thought you were a mini pumpkin, Karen! :D

Good luck Guy C, and wish you very good health. I hope you won't miss the donuts too much.

Since you work on the road and may start packing your lunch, I've found that all hospital cafeterias have microwaves for employees to heat their lunches. Sometimes the hospital cafeterias have stuff that you can eat, too.

I had baked salmon with a whole baked sweet potato for $4.26 yesterday at a hospital cafeteria without consequences, and it was really good!

Could be interesting to have a Gluten Police Force documentary... :)
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#651032 Sign New Online Petition To Mandate Gluten-Free Labeling On All Pharmaceutica...

Posted by Marilyn R on 03 November 2010 - 04:20 PM

I was only #476. You've worked hard on this Marcee. I would have expected that more people would have participated.
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#650830 Stressing On My Birthday

Posted by Marilyn R on 02 November 2010 - 06:28 PM

Hope you had a very happy birthday!

Don't know if this will help anyone, but I've had the discussion (once) with family (in-laws and out-laws) that this isn't a "fad" diet, and it's not like choosing to be a vegetarian. It's a serious autoimmune disease that can lead to MS, Lupus, Cancer, Diabetes, GERD, Thyroid problems, and more. (I'm pretty sure Parkinson's Disease, but haven't seen any literature supporting that.) If there's a family history of those diseases, I've mentioned them by name, some of whom are dearly departed. First cousin Connie, MS, mother, two aunts, breast CA, etc.

I love my family, as we all do, and I love the things they cook, but I have to be super careful, as you do, about what I eat so that I can live my life as normally as possible.

Now they (the family) pretty much leave me alone on the food front. They don't make a big deal about what I will or won't eat at get-togethers, and I don't either. It's not about food. I bring my own food (with something to share) or eat before the event so I don't get sick.

My sister still tries to buy special things for me at parties at her house. Even though she's super smart, she bought me rice crackers for her last party and pointed them out to me. I told her I suspected they had soy in them. She hotly retorted that she'd read every ingredient and there wasn't anything I couldn't have: gluten, soy or dairy. I asked her to produce the package and sure enough, there was soy listed in the ingredients. I told her how much it meant to me that she went out of her way for me.

If she couldn't have produced the package, I wouldn't have eaten them anyway. It just isn't worth it. But I was genuinely grateful to her for trying. My sister wouldn't knowingly poison me, we love each other to bits.

So don't get pressured into eating what those who love you want to cook for you, unless you really trust their knowledge. Holidays and celebrations are not about what we stick in our mouth. If our relatives can't get that, then they have a bigger problem than we do.
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#650535 Got A Little Lazy And Now I'm Paying For It

Posted by Marilyn R on 01 November 2010 - 03:54 PM

You will never get better if you cheat. :ph34r:

If you stick close to the diet, you should feel progressively better week after week, but there will be some ups and downs, and you may discover more confounding food intolerances. Six months later, I'm feeling much better.
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#649668 Share How Gluten Free Has Improved Your Life.

Posted by Marilyn R on 27 October 2010 - 05:44 PM

1. I don't wish I would die anymore, or think about how death would be better than living. I'm very grateful about that.

2. For the first time in 18 months, I'm going to travel to see my mother, who I used to visit cross country every three months come hell or high water. (Hell came.) I'm going to be so happy when I see her!

3. I must admit that I'm happy I haven't pooped my pants in months.

4. I'm happy that I don't have nausea every morning and can go to work and function.

5. I'm happy that it's just food intolerances vs. something reallly horrid, and I'm happy about how good real, fresh, whole food tastes B)
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#648607 Just Diagnosed: How To Keep Eating Enough?

Posted by Marilyn R on 23 October 2010 - 04:34 PM

Like previous posters (great advice everybody) I have a problem with breakfast but find that if I make myself eat something decent in the morning, I have fuel for a better day. Drizzle or spritz a glass bowl with olive oil, whip a cracked egg or two with water or alternative milk of your choice, and s & p & microwave for a minute. Meanwhile cut up a piece of fruit, and safe peanut butter if desired.

I pack a lunch 365 days a year, and pack one if going to a party. Check the camping sections at discount stores for one with a washable, removable insert. You can search the forum for excellent snack and/or lunch ideas. I have a huge container of protein shake that I purchased and is supposed to be gluten-free/Soy Free/ Dairy Free, but haven't tried it yet because I'm chicken about trying something processed. Lifetime Life Basics. Hope that helps...I researched quite awhile before buying it.

Real food is starting to taste so much more delicious. Whole cashews might be a good snack for you ... I haven't had a problem with Planters Whole Cashews, and they're delicious.

Now that I'm finally on an even keel, I'm ok with having to prepare every meal myself or with someone I trust. I feel like my cup isn't turned upside down, it isn't half empty or half full, I feel like I've come to terms with my cup, and don't want to upset it, so I stick with whole foods and experiment with new dishes and cuisines that involve trusted ingredients.

My experience was that at first this was overwhelming, going to a grocery store was a hideous experience, but became better. Now I can breeze through a grocery store, because I make a weekly trip to the meat market and vegetable stand, so I don't need much at the grocery.

So.. I started getting better and feeling hope, then started developing/or finding more food/additive intolerances. Then I started getting angry about it. I think that's normal. Tonight we had grilled salmon marinated in tangerine juice and crushed (almost rotten) strawberries with EVO and S&P. The salmon was the best I ever had. My DBF asked me to write down the recipe because it was so good. You're in a discovery period. I hope that you discover that it all becomes second nature and you discover a better world. You know the old cliche'... a door closes and a window opens.
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#647832 What's The Bread That's Inedible But Makes Good Stuffing?

Posted by Marilyn R on 20 October 2010 - 02:26 PM

Yes, I think you're the ONLY one! Posted Image

And yes, my Udi's is frozen and is $5.99 for a 12 oz. loaf. My daughter lives in Denver and since that's where Udi's is located, she can get it fresh. Sheesh, if you cut the crusts off, there's nothing left!!! Posted Image


I thought that I fell in love when I first found Udi's, but it seems that I've run out of love. (There's still have a loaf in the freezer that's been there for a month.)

I make tuna salad or etc. and dip Frito's scoops into them vs. spreading on bread. I tried making gluten-free cornbread recently and was really unhappy with the results.

My mom made the best stuffing ever, and this is the first year I won't get to follow her recipe. But I feel well enough to visit her for the holiday for the first time in 18 months! (Involves travel.)

Holidays can be really stressful even without dietary considerations. I hope everyone has a nice gluten-free Thanksgiving and superb stuffing!
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#646579 Reaction To Protein Powder

Posted by Marilyn R on 15 October 2010 - 04:29 PM

Hi Dave,

I'm glad you're feeling better. You're going to have a series of ups and downs for the next few months. I'm wishing you many "ups"!

The best advice I've received for coping with this disease has been on this forum. What I've learned here is that at first it is best to stick with whole foods that you have prepared yourself.

You may also find that you have other intolerances to certain foods, like soy, dairy or certain vegatables (usually nightshades... like peppers, eggplant, legumes, tomatoes) or corn. Your protein powder probably has one or more of those as an ingredient. If I was gambling on which it was, I'd eliminate soy first, but that was my situation, and not necessarily your's.

Your digestive system is irritated right now. KISS is what I try to live by. (Keep it simple, stupid.) Your white blood cells that have been attacking gluten are in battle mode, poised to fight other similar proteins, or even minute bits of gluten that you happen to ingest.

Your WBC may simmer down if you stick with whole fresh veggies and fruits and rice and real protein from fish or meat and/or eggs or nuts so that you can reintroduce dairy and other things after a period of time. Soy gives me such a horrendous reaction that I'm not sure I'll ever try it again, but if I do, I'll try derivatives or fermentations first. Again, good luck!

I'm almost six months gluten-free/Soy Free/Dairy free and went spendy for a protein mix at a health food store that claims to be gluten-free/SF/DF as well as corn/egg/preservative free, and it has sat on my counter for over a week because I'm scared to give it a whirl.

You could also be experiencing cross contamination or gluten withdrawal... Good luck with your journey to good health! You're on the right path...there's going to be a few bumps in the path down the right road. But remember that your worst days now are better than your best days then, and you'll find it easier to cope with the challenges.

Good luck!
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#646343 My Story - Need Help

Posted by Marilyn R on 14 October 2010 - 04:05 PM

I'm 50 y.o. with a family hx of pernicious anemia (from maternal grandparents to mother to me) and celiac disease. I became symptomatic and suffered 25 years later in life than you, but have had similar reactions, including wicked tachycardia.

Eliminating soy, gluten and dairy has improved my world 150 percent. I've wondered about corn, and I'll find out tomorrow, since I made a gluten-free DF SF cornbread tonight. I didn't mean to have a challenge, just craved cornbread and made it with an internet recipe I found earlier with stuff I had on hand and consumed it before I read this post.

I hope you find your answer, and wish you all of the best. Soy's tough to give up and has invaded our food supply, but OMG if soy is the culprit, you will do so incredibly better once your cells are waiting for real "bad" things to attack instead of a protein that is harmless, and even beneficial to other people (just like glutin). I'm down to 138 lbs. on a 6' frame, but I'm female and people think I'm trying to accomplish the "thin" look. So I also feel empathy for what people say to you about your weightloss.

Try eliminating soy for awhile, and dairy if necessary. That's my heart given advice along with best wishes for a better life.
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#646116 Rice Bloody Krispies

Posted by Marilyn R on 13 October 2010 - 06:47 PM

The easy/difficult answer is to eat whole foods, and foods you've prepared yourself. Eat what grew from the earth or swam in the ocean or was layed in an egg or used to eat grass. (Protien). Add that to something that was a root (onion, potato, radish, etc.) or grew on a plant or vine (bean, pea, berries, melons, lots of rice mixed with bits of this and that. And if you can grow your own herbs, add them!

You have to avoid boxes. Boxes and cans of stuff pre-processed and pre-seasoned and prepared. If you fastidiously read the labels and see there's things that you can't pronounce or immediately associate with something living, and something that isn't already on the list of things you need to avoid, you have got to ask yourself if it's worth it. Is it worth being sick?

There's still thousands of fabulous things to eat! Like instead of wierd manufactured food for breakfast, you can reheat some plain rice in the microwave and have a fried or scrambled egg over rice (or other allowable starch) with a piece of fruit or some juice on the side. It isn't as covenient as opening a box, but you'll be starting your day better. Or you can combine peanut butter and/or honey with some fruit (even plumped raisons) and rice.

I have a gluten-free crisped rice cereal, but can't currently tolerate dairy. I've felt so much better since going with cooking myself or my Dear partner cooks from real food.

Good luck!
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#645820 Cookies!

Posted by Marilyn R on 12 October 2010 - 04:59 PM

So I made cookies this morning, well the "dough" at least. It was my first venture in baking. The dough is excellent. Haven't cooked the cookies yet, so I will have to let you know how it turns out. But I am excited, and I can't wait to get home and bake them. So yeah, I just had to share my baking experience with you. Especially since I had so much fun with my experiment.

PS if you are wondering, they are chocolate cookies with white chips... 100% gluten free!!!!!!!!!!!! Yay!


Good for you! I hope they're delicious.
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#645544 Dining As A Gluten Free Guest

Posted by Marilyn R on 11 October 2010 - 05:36 PM

Love your response, sandsurf, so true and to the point, and a great reminder that we need to stand up for ourselves, or be prepared for the consequences.

Because the consequences are so particularly horrid for us, I agree that it's best to take your own food as a group dish, and avoid what others bring. Sometimes I pack a smaller dish of my "safe food" so that I don't have to watch/worry about what other people are polluting it with. And I squirrel a few extra snacks away in my purse just in case we stay longer, like nuts or a Lara bar or dried fruit.

Searching the web for Thai and/or Vietnamese recipes for whatever protein you have will give you something new to add to your meal plan. I was thrilled to come up with a crepe recipe tonight with rice flour and coconut milk and water. (Of course I pondered how I can make chocolate crepes) Most Mediteranian and Indian cookbooks or websites offer gluten-free recipes as well. Your local library might be worth visiting...good luck, and best wishes for a great party without worry or consequences. B)
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#645310 Woe Is Me...just A Rant...

Posted by Marilyn R on 10 October 2010 - 06:27 PM

:rolleyes: Your dad loved you and would have faced anyone trying to gluten you with a big fist, once he understood the harm it causes. The two of you could have made some tasty dishes, I imagine, from whatever protein he presented. A little olive oil, garlic, onion, celery, carrots, rosemary, possum. :rolleyes:
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#645302 I Had A Great Day Today

Posted by Marilyn R on 10 October 2010 - 05:43 PM

The first five months of this has been full of ups and downs. Feeling better, feeling worse, finding out that something else makes my autoimmune system go into overdrive. The figuring it out part is the pits. I've experienced every emotion that you can find words to describe over the past five months, both good and bad. But even the worst of the bad is better than the months that preceeded these past five months.

And today was a good day. I went fishing and did't catch a thing, but had fun trying. I went to the produce market and left spending $20 and ended up with more produce than I could carry out by myself! Tomorrow's lunch is already prepared and we had a fabulous dinner tonight with grilled corn, grilled baby potatoes, fresh steamed green beans and a protein. I've shared some of my bounty from the produce stand with a neighbor...we had a nice visit.

For the first time in well over a year (maybe two?), I cleaned my refrigerator out. OMG, it was bad! I just couldn't care or do anything about it before. My dear boyfriend said, "I think you're coming back!" when I was down on my knees cleaning the refrigerator.

Just wanted to share for those of you new to the diagnosis and/or forum that it takes awhile to get back to "normal" ... and maybe provide a walk down memory lane for those of you that have been down that road. This is the best day I've had in two years, and I'm celebrating it with the only people that understand!

I'm really freaking happy that I even care that I have a clean refrigerator! Yay!
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#644919 The Indian Food Thread

Posted by Marilyn R on 08 October 2010 - 05:36 PM

Wow! Can you be sweet talked into posting your favorite recipes? They sound wonderful!!

I don't have that cookbook and love the indian food I know so far (like baba g. and hummus and curry. I love tumeric! What a great spice, and one that's so good for you.
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