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Marilyn R

Member Since 10 Aug 2010
Offline Last Active Jul 06 2014 06:49 PM
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#751596 Still Angry Sometimes After 2 Years

Posted by Marilyn R on 28 November 2011 - 05:54 PM

Another thing I do is remind my doctors about testing for celiac disease. Instead of making small talk with them when they come in the exam room, I'll ask "How many patients did you test for celiac disease last month?" If they say "Um...none", I remind them that 1 in every 133 Americans have celiac disease, so if they're seeing between 25-30 patients a day, they should be ordering the panel at least every month. Or I'll ask how long it's been since they ordered a celiac panel.

I didn't know if I was being effective of not, but recently a doctor burst into the room and said "We got one!" She was really excited! A patient had a positive blood panel.

I copy medical articles for my doctors, too. I talk to the nurses and medical assistants about it, especially in the specialists office. I think it's worthy to try to educate the medical field. They get bombarded with drug reps and articles. I don't care if I'm repetative, I'm trying to get it to sink in. Hopefully that means someone won't have to go through what some of us went through. (Diagnosed or not.)
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#750963 Glutened And Blown Back Up

Posted by Marilyn R on 26 November 2011 - 05:09 PM

Here's what I do.

Shake a 1-2 cups of epsom salt, a cup of baking soda and a few drops of peppermint oil in the bath. Fill it up with hot water. Soak. Relax. I originally read about this in a book about autoimmune diseases when I first started getting sick. It's called a Detox Bath. And if you're up for it, you're supposed to visualize the toxins getting drained from your body. I think the salts and the peppermint help. I wasn't too productive with the visualizaion factor. :P
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#748507 New To Gluten Free. Advice And Serviving Thanksgiving

Posted by Marilyn R on 17 November 2011 - 04:30 PM

I have suffered with memory loss, depression, joint pain, TMJ, extremely painful menstrual cramps that get worse, I just haven't felt like me for the more than 2 years. I was diagnosed with Hashimotos 2 years ago and think a gluten free lifestyle would help. I am on day 3 of my gluten free lifestyle, so I am still learning.

This will be my first gluten free thanksgiving. We are having a huge luncheon today at work and I would would like to participate, but don't want to fail. I am also having Thanksgiving at my Grandmas house and don't want to offend her by not eating her food. Do you think it is offensive to bring my own? Is there anything I could eat within the dinner? All this is new to me and it is very scary. Right now I think I may be going through withdrawals. Yesterday I was irritable, depressed, out of it and very tired. This morning I have the shakes, diarrhea, dizzy and weak. Any advise would be helpful.


Hi Duncanne, and welcome to the forum.

Going gluten-free is so overwhelming at first. It's a major lifestlye change. The irritability, depression and fatigue are something I went through too when I first went gluten-free. (Have to clean, plan, get rid of old scratched wooden/non-stick cooking pans, cutting boards and utensils & toaasters, become food focused.) The shakes, D and weakness really concern me. That sounds like another food intolerance or fairly significant cross-contamination.

I'm not saying I'm giving the best advice, but what I would do is focus totally on getting well right now. I would not risk dinner at Grandma's. I'd call her up and tell her that you love her to bits and wouldn't miss her cooking or company for anything, but that you haven't been feeling well, tell her what you told us, and say you'll come by for dessert, and please don't be offended but you're just going to bring some fruit because you have to eat very simply or end up very sick right now.

Eat a safe meal at home and go over earlier than you said you would so you can see all of your relatives. When dessert time comes, whip out your nice fruit. If you're putting it on the table, take your little hand held cooler into grandma's kitchen, pull out a dish and stick the separate little container you packed of it, and walk back into the dining room. (That's so you don't have to appear greedy and be the first one to take the fruit before it gets contaminated by somone who uses a pie server from the pumpkin or apple pie to slide a little extra fruit on their plate.)

Too much flour going on at Thanksgiving for me, too many spoons dipped into this and that. Give yourself a break and some time heal (and learn), and promise Grandma that you'll be there next year with bells on your toes. :D
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#748222 What Are You Cooking For Thanksgiving?

Posted by Marilyn R on 16 November 2011 - 06:26 PM

I second that!

We'll probably have salad, stuff a Capon with rice and sausage stuffing, do mashed potatoes and gravy, a green been casserole (I'll fry my own onions and made cream of mushroom soup a few weeks ago).

Then again, since I don't have children and my family are going to be out of town, I may tell DP we're having hotdogs and he has to grill them while he's watching football. I'm leaning toward the latter. Maybe I'll make coleslaw. Yep, I'm thinking slaw dogs. To be determined.
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#748187 The What's For Dinner Tonight Chat

Posted by Marilyn R on 16 November 2011 - 04:37 PM

Those piggies will be on my short list! Thank you :D


You can get Chebe's at the gluten-free Mall btw. It's the easiest, most versatile, least problematic gluten-free mix (or scratch recipe) I've found with minimal ingredients/additives. And you don't need special equipment to make it, unless you count parchment paper and a fork as special equiipment.

If you use one of those baking sheets with holes in them, the bottom browns nicely, so if you flip what you've baked over to serve, it looks good too.
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#748174 The What's For Dinner Tonight Chat

Posted by Marilyn R on 16 November 2011 - 03:37 PM

OOOOHHH... I miss those. I used to buy crescent rolls and wrap Hillshire Farms sausages....yummy!

How do you do yours....now.


I use 1/2 a recipe of kneaded Chebes bread mix (cost's less than $3), rolled out thin, cut into rectangles or squares. I found a hot dog that has a natural skin with no gums or soy (Kayem brand) at BJ's. Wrap the Chebe's around the dogs and bake at 350 degrees for 20 or 25 minutes. (I broiled them at the end, but I've read since then that you can brush the crust with olive oil to brown better. That's with S&P Kettle brand chips. I love Chebes. Check out their web site.

(I froze the rest of the dough to make 2 sandwich or breakfast rolls.)

1/2 a recipe made 5 pigs in the blanket last night. I'm thinking about trying a sausage roll too.
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#745828 The What's For Dinner Tonight Chat

Posted by Marilyn R on 08 November 2011 - 04:35 PM

We had the result of miscommunication tonight. I called DP this afternoon to see if I needed to pick something up at the grocery and he said we had left over smoked pork and potatoes. I thought he was referring to the left over mashed potatoes. I started to make Shepard's Pie and was looking for the smashed taters when he announced that he scarfed those down for lunch, but had defrosted some frozen twice baked potatoes.

We ended up with a pork stir fry and twice baked potato. Strange, but it worked. I used up that stray bit of cauliflower, some onion, fresh green beens, carrot, celery. It filled us up and I'm always happy when I can stick cauliflower in something.
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#741798 The What's For Dinner Tonight Chat

Posted by Marilyn R on 25 October 2011 - 02:46 PM

I made a batch of homemade noodles. Boiled up a chicken, deboned it into the broth, added the noodles. This is a dish that is a tradition in our family. We eat it over mashed potatoes. Noodles turned out great!!


Would you share your noodle recipe? Pretty please, and Jestgar, if you have a good pickle recipe, I'd live to learn... :D
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#741173 The What's For Dinner Tonight Chat

Posted by Marilyn R on 23 October 2011 - 05:00 PM

I bought a clump of fennel at the farmer's market on Friday. So far, we've had Ina G's fennel and cheese gratin (scalloped potatoes and fennel with cheese), chicken soup with fennel and root vegetables, white bean dip with fennnel. I'm loving fennel!

For dinner, we had grilled pork loin ribs, Ina G's taters, and pear crisp.

I made homemade crackers today too. They're so much beter than anything I've bought. Used Elana Amsterdam's sesame cracker recipe. My DP loved them too. (And he'd tell he if they weren't good.)
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#737727 New And Stressed

Posted by Marilyn R on 10 October 2011 - 06:00 PM

Iím new to the forum. What brought me to this was over 11 years with a slowly progressive sensory peripheral neuropathy that at least 12 neurologists, most from a major teaching hospital, could not figure out. Finally, at my personal physicianís suggestion, I went to the Mayo Clinic. The neurologist there seem unsure based on looking over my medical records and the clinical exam. He drew blood and ran the usual nerve conduction and EMG tests. A few weeks later I received his report and all test result, which he also forwarded to my doctor.

On the next to the last line he mentioned doing additional lab work to check endomysial and gliadin antibodies to check for abnormalities associated with celiac disease. I called my doctor and requested that blood work to be done immediately because I really didnít want to do the other things that were recommended. None of the other doctors, including myself, had ever considered a gastrointestinal disease could be related to a neurological one. I was never asked about any of those symptoms and didnít offer them because they didnít seem ďmedically relevant.Ē

My test came back as a ďweak positiveĒ and my doctor said to start a gluten free diet. He did not want to follow up with a biopsy. I have been working on the gluten free diet for about a month or so and now also eliminating lactose. Some of the gastrointestinal symptoms have shown ďsomeĒ improvement, but not completely gone. The neurological symptoms began first and I canít really remember exactly when the gastrointestinal problems began. Itís hard to get a full family history, but in putting a few pieces of the puzzle together with one of my sisters, there is evidence this could be genetic from my fatherís side of the family.

My wife has been very supportive. The house has been cleared of anything containing gluten, but it is still stressful due to the drastic change in diet. She even made me some pretty good biscuits that were gluten free. I am sure many of you on here have gone through this maybe even some with neurological problems as well. This started in my 30ís and fortunately I was able to retire from law enforcement with a full retirement at 46. I donít think I could have worked in that field much longer with the problem I was having with my hands.

Grocery shopping time has tripled and is more stressful. Iím looking at ever source I can find including this forum.


Hi John, welcome to the forum. I experienced those tests from the neurologists..never conduction and etc. Ouch! It's too bad that most neurologists don't think about celiac disease, and sadly, most dr's dont.

We have a similar situation. My first symptoms were neuropathy, insomnia ... it took two years for me to hit rock bottom with gastro symptoms. My mother had gait ataxia and was dx with celiac disease, I haven't been diagnosed but follow the diet carefully.

From what I've read, it may take you longer to heal and you may be very sensitive to gluten cross-contamination. Ravenwood is someone who's dealt with these issues for quite awhile, and is a wealth of information.

Grocery shopping eventually gets easier, once you get the hang of it. If you don't like to cook, it's time to learn to love cooking!
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#735775 Is This Neuropathy?

Posted by Marilyn R on 02 October 2011 - 05:23 PM

A specialist would tell you that you can't say that you have neurapathy. That is a diagnosis. Then you can be referred to a neurologist that orders some really horrid tests and be told that you have polyneuropathy. That was my experience. I officially have permanent muscle and nerve damange . And I can say I have neuropathy now, vs. "pins and needle sensations."

Good gosh, I hope the medical community steps up to the plate on celiac disease and takes us out of the Neanderthal period.
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#735606 No Gluten Free Food In The Entire Stadium.?

Posted by Marilyn R on 01 October 2011 - 07:29 PM

Sory, I would expect it to be non gluten-free at a ballpark. I eat ahead of time, luckily my DP is happy with watching about 3 innings, then scooting towards home base.

We have a good meal and watch the rest of the game on TV at home, sweet home.

(We don't have season tickets though... maybe it's worthwhile to contact the field manager.)

Speaking for myself, I'd rather eat what I've prepared and cooked vs. trusting somebody who's dealing with buns all day to cook me something that won't make me sick.) Even if you were to offer me safe french fries, I couldn't get that excited. Are FF really food?

I don't know, but I'm guessing that if your dr. wrote a note on a prescription pad that you had severe food allergies and needed to eat every two hours to maintain blood sugar levels, you could bring whatever you want to the ballpark. Then you could pack your own food, like hummus and veggie sticks.

There's a road we all have to go down. You can choose to take it any way you want to. Sometimes we have to pre-plan, sometimes we need to opt out of family dinners or sporting events, or plan and pack our own foods. It isn't nessarily cool, but it's a survival mode, for me, not necessariy you.
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#734854 Bone Pain

Posted by Marilyn R on 28 September 2011 - 02:15 PM

My bone pain was associated with secondary hyperparathyroidism and osteopenia, and other food intolerances. (I'm not suggesting your's is, but it's something you might want to ask your doctor about because 25 percent of people with celiac disease have it.) Quinoa is on the "safe" list but kicks me right where it hurts, as does soy.

Ask your doctor to run a calcium level on you your next visit. If that's high, ask for a PTH level and a referral to an endocrinologist. And have you had a bone scan? Insurance usually pays for that once you're over 50. If you're younger you may have to call the insurance agency to get them to cover it. If so, PM me and I'll send you a great article which supports medical necessity. As for good news, if you figure out what proteins are bothering you and you strictly keep them out of your diet, the pain starts rescinding, you will have better sleep, and you actually feel well enought to start exercising again.
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#733473 The Good Over The Bad Of Celiac

Posted by Marilyn R on 23 September 2011 - 05:18 PM

This post hits me right in the heart. I recently hooked up with a first cousin on a social networking site. It's been 30 years since I've seen her. I told her about my gluten sensitivity and she responded that it's great that I can deal with a disease by what I eat.

She asked if I'd heard that she has pancreatic cancer and is on chemotherapy. She's a single mom and has a 20 year old son that is severely mentally retarded. Wow. I am so not into feeling sorry for myself.

I never look at the threads that ask what you miss most.

On the good side, I have learned to challenge doctors. I know more about celiac disease than a majority of them do, via this forum and a subscription to "Living Without". We're saving money from not eating out. And we're eating better by eating whole foods vs. processed. Meals are more about what we're eating vs. cooking up something quick to eat while we're watching tv, so we're having more meaningful conversations. And both of us are learning to cook things we never cooked before. Figuring it out saved my life and quality of life.
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#732809 So, I'm Just Sitting Here Staring At The Dog...

Posted by Marilyn R on 21 September 2011 - 04:44 PM

I don't know if this will help your best friend or not, but my 12 year old doberman was on her last leg 16 months ago and the vet put her on prednisone. That is wicked stuff and we followed the vet's directions but then started buying treats and foods that prommoted good hip and joint. She's still an old girl but so much better. We have had her off prednisone for two years and she's better off it than on it. Glucosomine is what helped my beloved pup, maybe it's worth a try? I didn't expect her to make it St Patrick's Day, and we're still going for (short) walks. Wish you welll, it's hard when a beloved pet is failing.
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