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cyberprof last won the day on February 13 2012

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  1. Anthony, our story is similar.

    It took me a while after I was diagnosed with celiac to suspect that that was my son's problem too. The only problem was that his blood test was negative. My son was 15, not in puberty (zero testosterone via blood test) and had a bone age of 12.1 when I refused to take "no" from the doctors. I'm only 5'2" but my husband/son's dad is 6'1" and my dad is 6'4" and I have two brothers who are ~6'. The docs kept telling me that son was destined to be short. (Now I wonder if I would be taller if I hadn't had undiagnosed celiac from age 15 or so.)

    He was also not gaining weight - 92 pounds at age 12, 97 pounds at age 15. For most of his life to age 7, he was 75th percentile for height, 50th percentile for weight but had fallen off that.

    My husband vetoed the endoscopy as too invasive and wanted son to go gluten-free. Son agreed to go gluten-free if he had the gene. So we had his genes tested and he was positive. Son also felt that he reacted to dairy too, so he went dairy free too. We started supplementing with Iron and Cod Liver Oil after I read a research paper on the efficacy of Vitamin A and Iron supplementation in starting puberty in boys with delayed puberty. See article: http://www.medscape.org/viewarticle/481326

    He grew a little bit in the first 6 months but according to his doc, he was in puberty within 6 months. After that he took off. He also never gets sick but had been sick continuously for years - little things but they add up.

    As you can see from my signature, he is now in college 18.5yo and 6'3", 165 pounds and size 12.5 feet. He still has trouble gaining weight and eats a lot.

    The saddest thing is what he told me. About 6 months gluten-free, I asked him if he felt any different after going gluten-free, and he said "I didn't realize that eating wasn't supposed to hurt." So I feel really blessed that I was diagnosed so that he could be diagnosed early. There are worse things than being short, of course, but it is nice that he was able to achieve his destiny. He's smart, healthy and happy.

    Anthony (nice name...my brother is also Anthony), I hope that your son has a similar journey and best of luck. I really recommend supplementation with Cod Liver Oil for Vitamin A and an iron supplement.(Carlson's Cod Liver Oil is gluten-free and it comes in capsuls that are taste-less.) You might have his iron level tested too, first.

  2. Interesting. Something that I've been obsessing about lately, too.

    I just yesterday volunteered at Angeline's, a homeless women's shelter in Seattle and when we toured the kitchen I was just about to ask "What do you do for people with food sensitivities, like wheat?" when I spied three packs of rice-based wheat-free hamburger buns, and they were gone after lunch of sloppy joes was served. I never did get to ask the cook as they were so busy.

    One idea I have is that my friend's son is about to start his Eagle Scout project and I've given him the idea that he should work with the local food bank to set up a gluten-free pantry like the one in the article. I can help him with research and if he gets it going I'll help publicize it with the local celiac groups. I don't really have time to do it all myself but if this doesn' work, I may have to. My company, Umpqua Bank, gives each employee 40 hours a year to volunteer on bank time, so that would help me in terms of time.

  3. Scarlett's mommy, I read your post here and the first one and we all can relate in various ways to your anger.

    For practical strategies, I suggest that you get a slow-cooker and look at the recipies on this site: The writer has a celiac daughter so all the recepies are gluten-free and they are really recepies that are good for people who don't cook or who are new to cooking. In fact, she likes to say her recepies don't make you "cook before you cook" and that the crock-pot does all the work.

    You could make a few meals a week and use it as a base for your meals w/leftovers. A crock-pot doesn't take up too much room in your mom's kitchen and the meals are easy and good for busy people (like moms of 2-year olds or people who work) because it's ready when at dinner time.

    Here's the website: http://crockpot365.blogspot.com/

    Good luck and hang in there! You'll make it.

    P.S. I just read above that Marilyn suggested a slow-cooker too. They really do help save money.

  4. I am worried as well about getting a false negative. I am still waiting on my celiac blood test results...However, I have read that those with hashimotos (I was just diagnosed last month) often test for a false negative. I had the blood draw done after being off gluten for only 3 days, so hopefully the antibodies were still high enough to get a result. I have a question...I have been off gluten for over a week now, and on a high dose probiotic. Should I still request a biopsy or will my intestines have healed up by this point? What is the best way to progress? I have a feeling the bloodwork might come back negative based on everything I am reading.

    I don't know if anyone can answer your questions with any certainty, but I know that blood tests often show a "false negative." And - I am an example of this - you can have negative blood tests and intestinal damage. If you have an intestinal biopsy one week after going gluten-free, it is illogical to expect that total healing would have occured in that short of time. But two weeks, two months, six weeks...who knows?

    And the other problem is that intestinal damage is patchy and could be missed. Make sure the doc takes at least 6 samples and, as we often advise, go gluten-free afterward regardless of test results and give it a good, serious test to see if it helps.

    Good luck and good health!

  5. I used to get awful migraines with my periods before going gluten free. Also, my periods were not normal at all - I only realize this now that I'm having normal periods. When I was eating gluten, the were thick, and old and rotten looking (sorry if TMI). Now, no headaches, no vomiting, and normal flow / colour.

    I agree with you SalmonNationWoman - I don't think ANYONE should eat wheat.

    My new internist (who is herself gluten-free but not celiac) says that NOBODY should eat gluten (except perhaps Asians with double DQ4).

  6. 6 months ago I got really sick with what I thought was a virus.After nine days with no food and being so sick and in pain with abdominal bloating sharp pains and what fealt like swelling I went to the hospital where they did an endoscopy and saw inflamation of my stomache. They lost my tissue sample during this test and said it was no big deal. I had a ct scan a ultra sound blood and fecal tests and a hida scan. This showed inflamation of my gallbladder and said it was working at a 17 percent ejection rate. During this time All i was eating was white bread crackers saltines bananas and cheerios. I then had my gallbladder removed hoping this was the culprit. After with no relief I went back to my gi and he said there was nothing more he could do for me and then refered me to loma linda where they ran another endoscopy. This came back on sept 13th national celiac awareness day as possitve for celiacs. I went completely gluten free. Or well here is what I was eating. Gluten free waffles. bananas chicken soup potatos that make me really sick and white rice.. I was feeling a little better but we went ahead and did a smart pill test which is like the gastric emtying study because of how bad the burning was. This came back normal but with slow movement through the colon. Two weeks ago I started getting really loose stools in the morning which turned into Diarhea. By last sunday the pain in my lower abdomin was so bad i was almost passing out. It fealt like last may all over. I started having blood come out of me. I went to the hospital where they did a colonoscopy and found colitis. They prescribed me some anti inflamatories to help keep the inflamation down. Im still really sick and in pain anything I try to eat even just chicken broth or bananas is killing my stomache. it hurts even if i dont eat. Im really discouraged is the celiacs causing this did i get glutened could it be from soy?

    Many of the folks I know with colitis have celiac too. I think (and hope) that you'll be able to get it under control.

    Try a whole-foods diet: Eat white rice (plain maybe some salt or olive oil if you can't stand it), chicken or turkey (get plain, raw chicken and cook it plain), green beans, cooked pears. Eat just these things for a few days - breakfast, lunch, dinner. Then slowly add in other things all homemade (not corn, soy, dairy, nuts, beans, peas, legumes, nightshades like potatoes, tomoatoes, eggplant, bell peppers, chilis, eggs) like cooked zuchini and other squashes, brown rice, cooked spinach, sweet potatoes, applesauce, carrots, steak, hamburger. If that is ok, then you could try one of the main allergins like eggs or dairy - or not, if your symptoms aren't fully under control.

    Good luck to you.

  7. eborzecki, just chiming in to say that he married you (and you, him) for in sickness and in health. Just think if it was reversed, you wouldn't love him or care for him less.

    And ravenwood (as always) is right that this way you may save yourself from cancer, diabetes and other EXPENSIVE and scary diseases that undiagnosed celiacs are more at risk for... doesn't mean every celiac gets them but there's a risk.

    As for the $$$, besides the advice to shop areound the sides of the store and get away from bread being the wrapping, try corn tortillas or rice. Even rice noodles aren't too expensive. Many tortilla chips are gluten-free and substitute for crackers to use with dips. Serve naturally gluten-free foods like potatoes, plain fruits and veggies, meats, beans, rice.

    If you like to bake, there are some easy treats that you can make that don't have lots of high-cost flour in them...like gluten-free flourless peanut butter cookies your kids will love: http://glutenfreegirl.com/yum-yum-peanut-butter/ Or Rice Krispie treats that use the new gluten-free Rice krispies (check the box for the new gluten-free label).

    And then last, you've GOT read this blog: http://crockpot365.blogspot.com/

    The author's daughter has celiac so all of these crockpot recepies are gluten free and easy! Great for family meals and timesaving too. Making your own spagetti sauce, beans, stews, etc. is very money-saving. She has a section on saving money.

    Good luck and let us know how it goes.

  8. We just got through eating and it was wonderful. My husband really liked the dumplings and so did I! I think he was surprised since there was no pasta in it. I only used a marinara sauce since I wanted to save on the fat and it was exceptional. I can't imagine how good it would be with the bechamel sauce too. Just sinful.

    Also, the ricotta cheese was only 15 oz. I used the Lucerne brand. What brand did you use that came in a container of 1 lb 2 oz?

    So, thanks for the recipe. This is a keeper and I'll probably have it for lunch tomorrow.

    I think I used a 15 or 16 oz ricotta. I think it wouldn't matter very much either way.

    Maybe I'll try it with marinara only instead of bechamel, as I'm losing weight and watching calories so I've been craving it, but haven't given into temptation!

  9. Espresso, I feel for you and I've been there. I haven't had time to read the whole thread, so I apologize if I'm saying the same thing that others have said.

    I have tried eating from the stated "safe" buffet salad and entrees that the servers said was gluten free. Never again.

    What I have done is to call the organizer and get the name of the catering manager ahead of time. I usually call a week before and then a reminder call two days before.

    Last week I was at a remote resort on the Columbia River and I had the best experience! I was worried because I didn't have a car and there was no grocery store nearby so I was stuck for two days if they didn't accomodate me. So, before we went I specified that I couldn't eat from the buffet, wouldn't take a chance and needed a plate made up for me. When I got there for dinner the first night I tracked down a server. He knew I was coming and then he told me that the chef made everyone's salmon entree gluten-free. So I didn't have to get anything special at all. And everyone who had the salmon (there was beef and chicken choices too) said it was the best salmon that they'd had in a long time. I was very lucky and wasn't singled out.

    At the dinner event that I went to last month, I introduced myself to the server, showed him where I was sitting and left a colorful scarf on the back of my chair. The server brought me my meal when everyone else got theirs and I didn't have to be different, although I had plain white rice insead of pilaf and no cream sauce on my chicken/veggies.

    I did have a bad experience recently where they said they'd have a plate but then told me to eat at the buffet. After I perservered, I did finally get a plate - with halibut! - about a 1/2 hour after everyone else had gotten to the buffet. Everyone was jealous, just like with your dinner. So I guess it's not always going to work.

    Hang in there! We're all here to support you. And keep a LARA bar or a Kind bar in your purse/briefcase at all times. Or a Snickers!

  10. 1. You say your husband won't keep a separate space, wash dishes, etc. -- would he physically stop you from making your own space somewhere (in the garage in bins, if need be, and a college fridge or something like that) and keeping your own dishes somewhere besides right in the sink, until you're ready to wash them?2. I am feeling a lot of anger about what you said about your husband. Just wanted you to know that. I don't have any advice. I'm a little horrified at his attitude.

    Hugs to you.

  11. That makes sense. And I do think there are some who have even had an actual diagnosis of celiac disease who have a hard time sticking to the diet and end up cheating. Just like diabetics. My boyfriend is diabetic and he often goes against medical advice because he wants to do whatever he wants.

    I can see the frustration aimed at people who use the gluten free diet as a fad. I am fairly new to this so I am trying to be optimistic about the whole thing. I am starting to see more gluten free items in the store so there is that side benefit. Hopefully this will start the public being educated in the matter. Before I started researching, I had no idea of the seriousness of celiac/gluten intolerance. I had heard that some people couldn't eat gluten, but until I started reading about it, I didn't take it seriously either. So it is good that these topics come up so that we can find ways to educate people about it. I do that at work sometimes when the topic comes up.

    I agree with this. I had a co-worker who claimed to be allergic to many foods including wheat. But she'd eat it anyway, and thus lowered my credibility. This was the place with the big birthday cake every month to celebrate peoples' birthdays...and they never got me a gluten-free cake after being there several years. So I stopped going to the party and got labeled a "Party-pooper".

  12. Meh. Whole Foods... try a different health food store. My local Whole Paycheck has the gluten free stuff scattershot all over the place, making it a slow experience, was out of several basic gluten-free grain items the last time I checked, and has a surprising lack of safe generic items because they're run thru a plant also manufacturing wheat.

    My local Whole Foods/paycheck has all the gluten-free products grouped together in the front of the store when you walk in. They are almost never out of what I need, although I don't go there as a first choice. (My first choice is Puget Consumer Co-op, which is much cheaper...sometimes PCC is even cheaper than the mainline grocery stores except for meat/fish.)

    So y'all might consider suggesting you local Whole Foods set up a dedicated gluten-free section. Ours even has a message board to post messages, a recipe center and a place to have food demonstrations.

  13. Yum! My kind of recipe. I love making pasta, dumplings, gnocchi and so on and it is so reassuring that there is no reason to ever have to settle for yucky gluten free food! I made a big batch of delicious marinara sauce and am actually making something similar to your recipe tomorrow evening with homemade ricotta (easy to make). :D

    I've been making marinara myself but I forgot to thaw it so I used store-bought.

    Homemade ricotta sounds good...I've been too busy to learn but I should try.

  14. I think that if you use too much cornstarch it does make the result like jello.

    But I use cornstarch (reduced amount) in all my sauces that call for a flour roux. But this is what I do:

    The directions for cornstarch say to use half the amount of cornstarch as the recipe indicates for flour.

    For example, if a recipe calls for 1/4 cup (which is four tablespoons) of flour, i use two tablespoons of rice flour plus 1 tablespoon of cornstarch. Most "white sauce" recipies (like roux, gravy, cheese sauce etc) say to melt butter or oil, add the flour and then add the broth or milk. I add the cornstarch to the liquid when it's cold in a measuring cup. Then in a separate pot, I melt the butter and add the flour (I use rice or garbanzo but almost any flour would work) and mix. Then when bubbly, I add the liquid/cornstarch mixture and stir until smooth.

    I find that this gives the best taste and texture but is still thick like a wheat-flour base would be.

  15. After I wrote this whole long post, I realized that this is an old thread. Oh, well. Maybe someone else can use it.

    Everyone has had good ideas. My son is a freshman but luckily his dorm has one gluten-free entree option each meal time. But he needs to gain weight so he eats a lot on his own.

    Progresso soups (not all - see label)

    Hormel Chili (read label)

    Oscar Meyer hot dogs

    Rice - Minute RIce comes in pre-cooked 1-cup servings (expensive but convenient...or you could get a rice cooker) flavors are white, brown, wild/brown and mexican. Rice might be really good while she's healing.

    Lunch meat - Hormel

    Tuna fish (most are gluten-free - check label)

    Thai Kitchen rice soups (like the Top Ramen my roommates ate in college only rice insead of wheat)

    Pre-cooked chicken strips

    Cereal - Corn, Rice and Flavored Chex cereals, rice krispies (check label on all these ...should say gluten-free very plainly)

    Tortila chips -Dorito (not all varieties) Mission (make nachos with chili if she doesn't have to be dairy-free too)

    Glutino pretzels dipped in peanut butter

    Jars of applesauce

    Canned peaches, pears and pineapple with cottage cheese

    Hard-boiled eggs (anyone can cook these...good to eat on the run)

    Gluten free frozen waffles

    And if she wants to get a crock pot, these recepies are really easy. Maybe you could teach her over Christmas/holiday break. http://crockpot365.blogspot.com/ All are gluten free and most are the "no prep - dump and cook" variety. If she got a 3.5 or 4 quart slow cooker, cooked on Sunday, she would have pot roast or chicken stew for the whole week.

    Good luck!

  16. Costco carries Aidells, Coleman's and AmyLu - some are gluten-free some not depending on flavor but the labels are usually clear. They are all precooked and yummy.

    During the holidays last year, AmyLu had some turkey, cranberry and jalepeno meatballs that were to die for, especially cooked with a sauce of jellied cranberries and chili sauce. Great in the crockpot for potlucks. Yum! I hope they have them again this year....I'm going to buy 20 packages!

  17. I am part Italian and I loved Italian pasta, ate it all the time. But even gluten-free pasta is not good for me and I've reduced my refined carbs. However, I can't give up my Italian food so I'm always on the look-out for fun dishes. This one has the benefit of not only being gluten-free and low grain AND it's also quicker than lasagne. One caveat is that it is not low fat and would be hard to convert to dairy-free but now that my CF/DF son has gone to college I get free rein.

    The recipe calls for homemade pasta sauce but I used jarred.

    It is a really pretty dish with the Italian Flag colors - red, green and white. Would be good for a dinner party or potluck. Enjoy!

    Baked Spinach Dumplings

    Malfatti gratinati (sometimes called gnocchi gnudi or ravioli gnudi, nude gnocchi and nude ravioli)

    Adapted from Twelve: A Tuscan Cookbook and this blog http://newfinmysoup.blogspot.com/2010/09/rustic-italian-sharing-tuscan-tradition.html

    Serves 6-8 (about 30 dumplings)

    1 quantity of Béchamel Sauce (recipe below)

    2 cups Simple Tomato Sauce (about ½ the quantity of the recipe below)

    2 lb, 10 oz fresh spinach (1 lb, 2 oz cooked spinach) Note: If using frozen spinach, use 2 lb frozen Chopped Baby Spinach

    1 lb, 2 oz fresh ricotta cheese

    2 eggs, lightly beaten

    1 cup freshly grated Parmesan cheese

    Freshly grated nutmeg

    Salt and pepper

    Butter for greasing baking dish

    ½ cup gluten-free flour (I used a blend but rice or garbanzo would work)

    Prepare the fresh tomato sauce, and set aside.

    Cook the spinach according to the package directions, drain, and let cool. When it has cooled, squeeze out the water with your hands (this is important, as extra water will make it difficult for the dumplings to hold their shape).

    In a medium bowl, combine the spinach, ricotta cheese, eggs, half the Parmesan cheese and a grating of nutmeg. Season with salt and pepper, and mix with a wooden spoon to make a soft mass. Set aside.

    Preheat the oven to 350 degrees F.

    While the oven is preheating, prepare the béchamel sauce.

    Liberally butter a large baking dish (I used 9 x 12 dish). Spoon a little of the béchamel sauce onto the bottom of the dish to just cover it.

    Put the flour on to a flat plate and pat your hands in the flour. Using a tablespoon and your hands, form dumplings the size of a small egg, slightly elongated (about 2 ½ inches long by 1 ½ inches wide). Dust them very lightly in the flour and put them onto the béchamel in neat rows. Cover with the remaining béchamel. Splash the surface with the tomato sauce and sprinkle with the remaining Parmesan cheese. Bake for 30 minutes, or until the top is lightly golden. Serve hot.



    Béchamel Sauce

    Makes 4 cups

    7 tablespoons unsalted butter

    ¼ cup gluten-free flour (I used a blend but rice or garbanzo would work)

    2 tablespoons corn starch

    4 cups whole milk

    Salt and pepper

    Freshly grated nutmeg

    Add cornstarch to milk and mix. Heat the milk in a saucepan or microwave. In a separate medium saucepan, melt the butter, and then add the flour. Stir with a wooden spoon and cook for a minute or two until it is lightly golden. Add a ladleful of the warm milk and stir well so it does not form lumps. Continue adding the milk in ladlefuls and stirring constantly until all the milk has been incorporated. Season with salt and pepper, and a generous grating of nutmeg. Continue cooking and stirring on low heat for another 10 minutes to thicken. It should be very smooth. Remove from the heat. Just before using, give it a good whisking.


    Simple Tomato Sauce

    Pomarola Semplice

    Makes about 4 cups

    4 garlic cloves, peeled and lightly crushed with the flat of a large knife

    6 tablespoons olive oil

    3 lb ripe, fresh tomatoes, skinned and chopped (or two, 28-ounce cans of San Marzano whole, peeled tomatoes with juice)

    Salt and pepper

    12 fresh basil leaves, roughly torn

    If using canned tomatoes, dump tomatoes and juice into a bowl and break up the tomatoes with your hands. Put the garlic and olive oil into a saucepan over medium heat. When the garlic begins to sizzle, add the tomatoes. Season with salt and pepper. Cook, stirring occasionally, about 20-25 minutes, until the tomatoes have melted into a thick, smooth sauce (if using canned tomatoes, the cooking time is slightly less, about 15 minutes from when the tomatoes begin to boil). Add the basil and turn off the heat.

  18. http://www.medscape.com/viewarticle/751259

    "Challenging biopsied duodenal mucosa with gliadin, the toxic fraction of wheat gluten, can help establish a diagnosis of celiac disease when gluten sensitivity is suspected, but can't be confirmed with standard diagnostic tests, Italian researchers say..."

    Sadly, the test is complicated enough that most labs can't do it, but at least it's a step in the right direction. Testing celiacs who are gluten free without making them harm themselves with gluten first.

    Very cool. Progress.

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