Nutrition Student With Questions For The Gluten Free World

[malfnutstudent]

To those of you who may read this, my name is Meredith and I'm a senior at the University of North Florida and in April i will be graduating with my Nutrition degree. Along the way i have learned a lot of things but the area that has most peaked my interest has been celiac disease and gluten free cooking. As part of a final project we have to come up with a hypothetical business and interview people that are doing something similar to what our business is and what i'm doing i can't find anyone who does something similar.

My "business" would be one that catered to those recently diagnosed with celiac disease or anyone looking to eliminate gluten from their diet. It would be a business of support and learning. As a client you would be able to ask questions and get answers as well as learn how to cook and eat gluten free and still have your food be delicious. What i want to know from the gluten free community is what would have made the transition easier for you when you were diagnosed. What kind of programs would you have liked to have found, what kind of education would you have looked for and what kind of environment would you have liked to be in when facing this new challenge. I would love any and all insight, not only for my project but for my future in nutrition and dietetics too. Also if there is anyone who knows of a business similar to the one i have described their information would be super useful too.

Thanks for taking the time out of your day to read and reply to this post!!

Meredith

[Jungle]

What would have helped?

Someone to come to my house and help me pull all the Gluten foods.

Someone to go to my grocery store with me to show me what gluten-free options I do have.

A booklet with recipes for common things like pancakes, biscuits, cookies etc.

Someone to explain the ins and outs of celiacs.

A list of tricks for eating out

A simple way to explain celiacs to friends and family, restaurant staff.

What a great idea for a project.

[mbrookes]

You have a great idea. Good luck!

The thing that would have helped me most? I really needed someone to help me convert old favorite recipes to gluten free. I have gotten pretty good at it now, but I threw out a bunch of failures... some too grim to even mention.

Little tricks that most of us have learned (like carrying crackers in my purse to cocktail parties) would make a good booklet.

[divamomma]

I would have liked something that was geared to children. Meeting with the diectician in a children's hospital in the pediatric celiac clinic I would have thought she would at least address my daughter and have things to explain celiac/gluten free to her. Props, books, pictures ....something. I found that discouraging. I think adults get a lot of support (groups, forums, books, cooking classes etc) but there is hardly anything for kids with celiac.

[cap6]

I needed someone to just plain teach me the basics of cooking.

[anna34]

My daughter was just diagnosed 2 weeks ago, so I'm right in the thick of what you're interested in exploring.

Things that would be useful:

- a current list of everyday products/brands that are gluten-free, but aren't labelled as such (sauces, salad dressings, candies...) - basically, a list of regular brands that are gluten-free so that you don't have to purchase the expensive officially labelled gluten-free products

- information on supplements that should be given to a newly diagnosed Celiac

- suggestions on how to help your child feel satiated during the first weeks/months of the diet, because from what I can tell, a lot of people feel hungry all the time once the diet starts working

- homemade bread recipes and a list of where to go in the local community to get the special ingredients

- information on cross-contamination and how to organize your kitchen to prevent it

- a way to get connected with another local family to share ideas/cooking tips/shopping tips

[mommida]

I have to add that sometimes another food allergen is discovered, and a person has to not only go gluten free, but casein or egg free too.

Then the diet gets harder when the person has to avoid more than one allergen. You should be prepared for that scenario, and that is when a person really needs your help. I could have used some help back when all top 8 allergens and peas had to be removed from my daughter's elimination diet. I also had to have information on amino acid formaula (seriously why are they artificially sweetened?), feeding tubes and "non-food" items.

Back to gluten free food.... A lot of the food is not enriched,and vitamin and nutrient content of processed gluten free food is low. Celiacs (as well as the general population) vitamin B12 levels are low. So a good thing would be to help Celiacs find good supplemental vitamins. (Sounds easier than what reality is, as I can not tolerate a lot of vitamins.)

[love2travel]

My official diagnosis was a month ago but I was gluten-free for five months prior to my three-month gluten challenge.

The things that would have helped me most include:

- already mentioned but to reiterate - vitamin supplements. No one (including my dietician) told me about the fact that many celiacs require Calcium, Vitamin B12, D3 and magnesium supplements. I found that out here!! You may need to be your own doctor/dietitian/researcher.

- I teach cooking classes (including gluten-free/naturally gluten-free) so that aspect is easy for me. However, when I first heard my doctor suspected I had celiac disease from bloodwork I was shocked (no visible symptoms) so headed for the icky gluten-free section and pigged out on horrid processed snacks. There is no need for that! Thankfully I knew better this time around. But some people panic and are overwhelmed with eating/ingredients. Perhaps a list of various flour blends for pancakes and waffles, scones, breads, quick breads, English muffins, tortilla shells, pastry, etc. would be helpful for many.

- many fours contain more calories per gram than regular refined white flour. Also, there is extra added fat and sugar in many gluten-free products to make them more palatable which can be a concern for those of us who are overweight. How different flours act, what they are useful for, and education on using grains and adding fibre would help. You tend to find things like this out on your own.

- Label laws - not just label reading. I was not told to contact manufacturers for info but learned that on my own. For example, Lea & Perrins Worcestershire is gluten-free in the U.S. but NOT in Canada. Apparently one must be a detective.

- you can print off restaurant cards for free in various languages to take to restaurants to explain gluten-free food, etc. This has helped me in Slovenia, Croatia, Italy, etc. However, I am going to do my own and tweak as there is no mention of cross contamination which is a HUGE issue. You need to learn ASSERTION!

- information on what to do post diagnosis would help, such as when to go for bloodwork, bone density testing and so on. I was not told any of this. Are you supposed to guess?

[lpellegr]

Some of this is already out there, for example this site and the Clan Thompson site. I don't know if newly diagnosed people would be willing to pay someone for things they can get for themselves, but maybe some are not able to pull it together for themselves. I went to the bookstore immediately and got cookbooks and other books about being gluten-free, then found these sites on the computer. Clan Thompson sells frequently updated lists of commercially available foods that are gluten-free and restaurant menus with gluten-free options, which you can put on a PDA or computer (probably on smartphones by now). I know I was given outdated and just plain wrong information by a dietician and had to educate her (no, Rice Krispies are not gluten-free). Lots of places have available information if you take the time to look, but for those who don't know where to start, here's what I would suggest:

Someone they could contact when they have a question about a food.

Someone to point them to sources of lists of safe foods and meds, like this website.

Someone to go through their cupboards and let them know what is safe and what is not, and then set up a sticker program (green for gluten-free, red for not) so that everything in the house gets tagged as it comes in and the whole family knows which foods are which.

Someone to go over the whole issue of how to avoid cross-contamination in the house, especially when cooking some gluten-free and some not. What utensils to duplicate, what to never use for gluten-free, what needs to be replaced.

Someone to educate them on label-reading, cross-contamination in processing, and hidden sources of gluten.

Someone to take their current diet and find them ways to substitute gluten-free items or learn to live without.

Someone to hold their hand through their first baking attempts and their first experience with nasty expensive gluten-free bread from stores.

Almost like alcoholics, new celiacs need a sponsor who has been there and figured it out. You can find a lot of that in the tribe here, once you find this site, but having someone you can personally call when you panic or just don't know might be a help. You could be a service matching newbies with old pros, maybe working through doctor's offices - let them know that when someone is newly diagnosed they can contact you for a "how to get started gluten-free" package.

[mushroom]

I agree with Lee that what is needed is an Introduction to Gluten Free package telling you how to get started. I couldn't count how many posters complain that when given their diagnosis their doctor just tells them to go away and eat gluten free, without any indication of how to do it (because he doesn't know) and suggests that they see a dietitian, most of whom know little more about gluten than the doctor.

Many people are totally overwhelmed by this instruction, particularly those who know little about nutrition and whose cooking skills have not progressed much beyond boiling water and heating something up in the microwave. Some stores that sell a lot of gluten free ingredients offer cooking classes, some of them are even free with purchase of ingredients necessary to make the dishes, but they are fairly few and far between. We have threads which run for pages on the forum on baking breads, the various types of flours and their interactions and how they affect the rise of the bread, rising times, baking temperatures. Because most commercial breads have been so awful this is something that most of us go through by trial and error (with a little help from our friends here). For example, one poster made the discovery that aditng baking powder to her yeast bread gave it better rise and texture/softness.