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lbsteenwyk

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    I am a registered dietitian who works extensively with celiac patients. I'm heavily involved with 3 support groups, one adult group that I direct, another that I serve as nutrition advisor for, and the local chapter of R.O.C.K. My father has DH and my 4 year old daughter has CD, diagnosed by symptomatic improvement on the GF diet.
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  • TinaMarie

    TinaMarie

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  1. I ran across this announcement on another web site and thought some of you might be interested:

    SUMMARY: The Food and Drug Administration (FDA) is announcing a public

    meeting to obtain expert comment and consultation from stakeholders to

    help the agency to define and permit the voluntary use on food labeling

    of the term ``gluten-free''. The meeting will focus on food

    manufacturing, analytical methods, and consumer issues related to

    reduced levels of gluten in food. We request that those who wish to

    speak at the meeting, or otherwise provide FDA with their written or

    oral comments, focus on the questions set out in this document.

    DATES: The public meeting will be held on Friday, August 19, 2005, from

    8:30 a.m. to 5 p.m. All those attending the meeting must register by

    August 12, 2005. See the ``Registration'' heading of the SUPPLEMENTARY

    INFORMATION section of this document for details on how to register.

    Submit written or electronic comments by September 19, 2005.

    ADDRESSES: The public meeting will be held at the Food and Drug

    Administration, Center for Food Safety and Applied Nutrition, 5100

    Paint Branch Pkwy., Harvey W. Wiley Auditorium, College Park, MD 20740.

    You may submit written comments, identified with Docket No. 2005N-

    0279, to the Division of Dockets Management, 5630 Fishers Lane, rm.

    1061, Rockville, MD 20852. Submit electronic comments to Open Original Shared Link

    A link to the full announcement is below. It includes questions that they will be addressing at this meeting.

    Open Original Shared Link

  2. Hi Christi:

    I do a lot of baking. I started out using a lot of rice flour and found the same thing, the gritty texture. Now I use Bette Hagman's Four Flour Bean Mix which you can substitute 1:1 for wheat flour in most recipes. Here is the formula:

    2 cups Garfava Flour (2/3 part)

    1 cup Sorghum Flour (1/3 part)

    3 cups Tapioca Flour (1 part)

    3 cups Cornstarch (1 part)

    I really like this flour combination - it is much lighter than the rice flour mixes, has no gritty texture, and does not have a strong bean flavor. I find that using sorghum flour gives products a more "wheat-like" taste. Other ingredients that can improve texture are xanthan gum, dough enhancer (available from Authentic Foods) and egg replacer (from Ener-G Foods). Sorghum also is a darker flour and helps with the color of baked goods. I also use buckwheat flour for better color and nutrition. I've posted recipes elsewhere in this forum, but feel free to PM me if you need more ideas or advice.

  3. Yes, a recent study suggests that the best time to introduce gluten to minimize the possibility of developing celiac disease is between 4-6 months of age. There is also evidence that breastfeeding well past the introduction of gluten can have a beneficial impact. If you are breastfeeding, I would suggest continuing for at least 1 year (which is recommended anyway by the American Academy of Pediatrics) to supplement your child as solids are introduced.

  4. Here are some resources your dietitian may find helpful.

    Two articles in a recent issue of Gastroenterology that deal specifically with diet guidelines. The first is by Shelly Case, who is an RD well-versed in celiac disease; she has written a couple of books.

    Open Original Shared Link

    Open Original Shared Link

    Other good/reputable resources include:

    Open Original Shared Link

    Open Original Shared Link

    Open Original Shared Link

    This site has an excellent slide show on Celiac Disease as well as a good beginners guide called The Gluten Free Diet Guide for Families.

    There are other resources out there, but these should get her started. You may find them helpful as well.

  5. I guess I'll weigh in here with some comments, since I am a registered dietitian (RD). I've been a little reluctant to admit that here, b/c I see negative comments about RD's frequently. First, I absolutely agree that there is a large void in knowlege about celiac disease and the gluten-free diet among dietitians. I was guilty myself, until I started researching this area intensely because of my child's diagnosis. I work with four other RDs and I know much more about the gluten-free diet than any of them. Of course the gluten-free counseling always goes to me anyway, since I am now considered the expert.

    If you are looking for an RD, I would be sure to see someone who has expertise in this area. Some dietitians are members of Dietetic Practice Groups. There is a sub-specialty of the Medical Nutrition Practice Group called Dietitians in Gluten Intolerance Disease. The American Dietetic Association has a referral service for locating RDs.

    Open Original Shared Link

    You can type in your zip code and search for RDs by specialty. You can select both Digestive Disorders and Gastrointestinal Diseases/Disorders to find someone who will be most likely to have specialized knowlege in celiac disease. Most of the RDs who participate in this referral service are in private practice, so you may find that they will take extra time to find resources for you, etc than if you just make an appointment with the local hospital dietitian. Most hospital RDs tend to be generalists, unless they work for very large teaching hospitals where they may work in one specialty area.

    I am thinking about offering to do a workshop next year at my state Dietetic Association's Annual Meeting on counseling patients with Celiac Disease. I think there is a huge need for dietitians to help newly diagnosed persons with more of the practical aspects of dealing with the gluten free diet. What information do you think would be most helpful to receive from an RD? Here is what I usually talk to clients about:

    What is celiac disease/Autoimmune DO/Importance of lifelong gluten-free diet

    Allowed vs not allowed grains

    Hidden Sources of gluten/ingredients that may contain gluten

    Label reading/ Companies that clearly label gluten/ calling manufacterers for more info

    Cross-contamination

    Resources for gluten free dining

    Gluten free baking tips - when applicable - some people are not interested in this aspect.

    Resources for gluten free foods

    Web Sources for more celiac disease and gluten-free info - I always refer people to this website as well as others.

    Answer any specific questions about gluten-free status of foods, etc.

    Are there other things that you wished the dietitian you talked with had addressed?

  6. Frenchiemamma:

    This may sound really weird, but do you think it is possible that your husband secretly fears that he, himself, may have celiac disease? Does he have any symptoms at all? Could he be afraid that if he feels better on a gluten free diet, that he would then have to give up all the food he loves? A lot of people refuse to get tested for this reason. I know this may seem a little far out, but I just thought I would throw out the idea . . .

  7. Interesting link. Can you believe the part that said only 45-80% of celiac disease children adhere to the gluten-free diet ?!?!?!?! OMG

    Merika: Yes, I was surprised to read that. I can't imagine a parent who wouldn't make every effort to keep their child gluten free. But, I'm sure it gets more difficult as children get older and are able to make their own decisions about food. On the other hand, there is sooo much misinformation about celiac disease out there, and many parents of newly dx children may not be aware of how to get support and education about celiac.

  8. Here are 2 documents from well-respected organizations in the medical community that may help you make a case for your doctor to test you. The first is Myths and Facts about Celiac Disease, from the University of Chicago Medical Center.

    Open Original Shared Link

    The second is the National Institutes of Health Concensus Panel on Celiac Disease.

    Open Original Shared Link

    Good Luck!

  9. Tamara is right, your daughter has numerous symptoms of some type of malabsorption syndrome. Have you been to see a Pediatric Gastroenterologist? Even if you have to travel out of town to see one, I think a Pedicatric GI doc would have a better insight into your daughter's problems than even an adult Gastroenterologist would. At the very least, you should insist that your doctor do a complete celiac blood panel on your daughter:

    Full Celiac Panel

    Anti-Gliadin (AGA) IgA

    Anti-Gliadin (AGA) IgG

    Anti-Endomysial (EMA) IgA

    Anti-Tissue Transglutaminase

    Good Luck!

  10. Wow! This flour sounds really interesting. I want to try it, but I think I will wait to hear your results, since it's a bit on the expensive side.

    As far as flour to blend with it instead of wheat, I think your idea of using a gluten free flour mix is a good idea, since you don't bake much and might not have other flours on hand. If you have other gluten free flour available, you might try equal parts of Sorghum, garbanzo and tapioca flour.

    I'll be watching this thread to see what you think of the mesquite flour. ;)

  11. I do give my daughter a multivitamin-mineral. We use Animal Parade. My daughter is very picky and does not eat a lot of fruits and vegetables so I look at the vitamin as insurance. If your child eats a varied diet, though, you probably do not need a multi.

    I have used both Boost and Ensure for my kids, but never straight. I usually add 2 ounces to 4-6 ounces of milk. I started this for extra calories for my daughter because she was underweight. My son's weight is fine, but he's not a milk drinker, and the boost/milk combo gets him to drink the milk. Now it's just become a night time routine - they get their "milkshakes" before going to bed.

  12. My guess is that you will gain weight, but maybe only 5-10 lbs. You may have to change your eating habits to include lower fat foods, if you've been used to eating anything you want. The gluten-free diet can be slimming though; my husband lost 10 lbs, just by eating gluten-free at home when my daughter was dx. My father, who has celiac, lost about 8 lbs when he went gluten-free. He was already underweight to begin with and had always been "naturally thin". If the rest of your family is thin, you may just have great metabolism, and your weight won't change much.

  13. Jnkmnky has some great ideas for mainstream gluten-free meals. It's true, you can purchase most of your foods at the regular grocery store.

    I haven't tried Kinnikinnick bread; it may be fabulous. One reason I make my own bread (and other baked goods) is because I feel they are more nutritious than most of the gluten-free products out there - which are primarily white rice flour and lots of tapioca or potato starch. I don't want my daughter to develop a taste for that. If she didn't have to be gluten free, I wouldn't be allowing regular white bread in her diet either! Most gluten free products aren't fortified with iron and B vitamins like regular bread, so I try to use the more nutritious flours in my baking. Here are a few favorite recipes:

    gluten-free Pancakes or Waffles

    This is a double recipe. I always freeze the extras for quick breakfasts during the week.

    1 cup gluten-free flour (I use 2 parts brown rice flour, 2/3 part potato starch, 1/3 part tapioca flour)

    1/2 cup sorghum flour

    1/2 cup garbanzo flour

    1/4 cup ground flax seeds

    1 1/2 tsp baking powder

    1 1/2 tsp baking soda

    1 tsp egg replacer (optional) from Ener-G Foods

    2 eggs

    1/4 cup canola oil

    2 1/2 cups gluten-free buttermilk

    Variation: Use 1/2 cup buckwheat flour, 1/4 cup sorghum and 1/4 cup garbanzo flour. Everything else is the same.

    Mix all dry ingredients together, add the wet ingredients on top of the dry and mix the whole thing thoroughly. Cook for 3-4 minutes on a HOT griddle or waffle maker. To reheat from frozen, spread butter on first, then microwave for 1 minute.

    Delicious Nutritious gluten-free Pumpkin Muffins

    Makes 18 Muffins

    1 1/2 cup Four Flour Bean Mix (from Bette Hagman's "The Gluten Free Gourmet Bakes Bread")

    Four Flour Bean Mix:

    2 cups garfava bean flour

    1 cup sorghum flour

    3 cups cornstarch

    3 cups tapioca flour

    1/2 cup buckwheat flour

    1/4 cup ground flax seeds

    1/4 cup rice bran

    2 tsp baking soda

    2 tsp baking powder

    1 tsp Xanthan gum

    1 tsp Egg Replacer (optional)

    2 tsp Cinnamon

    1/2 tsp nutmeg

    1 tsp powdered Ginger

    2 tsp dried orange peel (optional)

    2 cups mashed pumpkin (from a can)

    4 eggs

    6 Tbs Canola Oil

    1/4 cup Molasses

    1/4 cup Maple Syrup or Honey

    Mix the wet and dry ingredients in separate bowls. Combine the 2 mixtures and mix thoroughly. Spoon into greased muffin cups and bake at 350 for 15 minutes.

    Springy Cornbread

    The best cornbread recipe I have found is from The Gluten Free Gourmet Bakes Bread. Here is her recipe:

    1 cup Four Flour Bean Mix (see previous recipe)

    1 cup yellow cornmeal

    1/2 tsp xanthan gum

    1 tsp egg replacer

    1/4 cup sugar

    1 tsp baking soda

    1 tsp baking powder

    3/4 tsp salt

    Note: I nearly always add 2 Tbs ground flax seed to the dry ingredients)

    1 cup plain yogurt

    2 eggs

    2 tbs melted margarine (or butter, or oil)

    1/4 cup orange juice

    Mix the dry ingredients and the wet ingredients in separate bowls. Mix together, pour into greased 8" square pan and bake at 350 for 20-25 minutes. I find the shorter time is best.

    Hayley's Special Bread

    Make this in a bread machine. It would probably work in the oven too, though I haven't tried it that way.

    2 tsp dry yeast

    2 Cups Gluten Free Flour (I use 2 parts Brown rice flour, 2/3 part potato starch, 1/3 part tapioca flour)

    1/4 cup ground flax seed

    3 Tbs Sugar

    2 tsp Xanthan gum

    1 tsp Salt

    2 Tbs Oil

    2 Eggs

    1 cup gluten-free Buttermilk

    Put the ingredients in your bread machine in the order the manufacturer suggests. Scrape down the sides of the pan during the first kneading. This is a mild flavored bread that works well for sandwiches, cinnamon toast, french toast, etc. It is especially good for grilled cheese sandwiches!

    I know these recipes seem to have a lot of ingredients. If you want to bake, the days of using one type of flour are gone. I want to stress that once you have this stuff in your kitchen and you've made up a batch of the basic gluten free flour mix (keep it stored in the fridge), this is really not hard. I can make all of these recipes in 10 minutes or less, not including baking time. Of course that changes when my little ones want to help! I really encourage my daughter to get involved with the baking process. Baking is going to be an essential life skill for her!

    Another note, some ingredients like Xanthan gum and Egg replacer are expensive. But remember that you only use a small amount each time you bake. An 8 oz bag of Zanthan gum costs about $11, but you'll probably only buy it twice a year. I'm still working on the same box of Egg Replacer that I started with over 6 months ago. These ingredients really help the texture of gluten free baked goods, so in my opinion, they are well worth the expense.

    Good luck! PM me if you want more recipes or other advice about baking. :)

  14. scotties-mom:

    I've used the Gluten Free Trading company for mail ordering products. They have a HUGE selection and only charge you the actual shipping costs. My orders of about $80 cost $7-8 to ship. Open Original Shared Link

    I make most of our gluten-free baked goods at home and buy a few items at a local health food store. Mostly I buy the special flours to bake with. I think you can make far better products at home!

    Remember this, too: You're son is very young and will likely adjust very easily to the taste of gluten free foods. You've been eating wheat for years so you will find the taste of gluten free foods very different from what you are used to. It does take a little time to appreciate the "different" taste of gluten-free products. Some of them truly are awful, but believe me, you can find some that are very good and you can also make baked goods that taste very similar to products made with wheat. Just remember, what tastes bad to you, may not taste the same way to your son. I've often been surprised at what my daughter thinks is good!

    I have some good bread, muffin, pancake recipes, etc. I will try to post these later today. Right now my kids are begging me to take them outside!

  15. Lisa -

    I'm glad to see you back on the board. I hadn't checked in for about a week so when I read this thread yesterday, I was really disturbed that you had been so upset. I know most of us want this forum to be supportive, especially to newcomers. You WILL find differing opinions here, which I think helps all of us to broaden our horizons when it comes to celiac disease.

    When we began the gluten free diet with my daughter at 26 months, I would have done anything to get her to eat. Seeing your child malnourished, listless, in pain, etc, is very disturbing. Naturally your priority is to get your child eating again. This age is difficult anyway when it comes to food, without having the added complication of celiac disease. I think you'll find that your son will eat more and more foods as time goes on, but don't expect it to happen overnight! It took my daughter about 6 months after starting the gluten-free diet to show interest in food, and even now I would classify her as very picky. I found the best approach to encourage eating was to offer very small portions of 2 or 3 foods at a time and let her decide how much she wanted. I also would let her sit alone at a small table, rather than hanging over her and bugging/begging her to eat. Children will quickly pick up that they can use this as a control issue, even at such a young age. Basically, try to take the pressure off at meal times and create pleasant associations with food.

    I hope this helps in some way. Keep us posted on your son's progress. I'm sure you will find lots of good information and support here to help you adjust to your son's diet.

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