Gluten Allergy (Celiac Disease) in My 17 Month Old, Help Updated

Updated on September 24, 2008
J.M. asks from Saint Joseph, MN
32 answers

Hello, after a 2 month test run avoiding dairy for possible lactose intolerance, my son has tested positive for a gluten allergy. I am looking for any products that you may be aware of that he can or can not have. Any advice from anyone whose children have had this or you personally would be great. I did go to Cash Wise and buy Gluten Free items, but that will be very expensive to keep up on. I am looking for alternatives that I can prepare. Really, any advice as I know nothing about this, I have known for only 2 days. Thanks in advance.

There is a support group in St. Cloud that I have been in touch with since I posted this and I got a ton on information. I would still like to hear from anyone out there in mamasource world as well. Too much info can never hurt. J.

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S.R.

answers from Wausau on

There is a magazine called Living Without - a lifestyle guide for people with food and chemical sensitivities. It has a lot of information and best of all recipes. The website is: http://www.livingwithout.com/

Good luck- hope this helps!!

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J.T.

answers from Cedar Rapids on

I don't know a whole lot about this allergy but a good friend of mine has it and I'm learning a lot from him. He told me that you may want to keep milk away for a while also. He can drink some milk but if he drinks 1-2 glasses of it he is in pain from his stomach. Good luck to you. Hope this helped.

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E.B.

answers from Duluth on

There are many great websites out there and many good products.

try visiting:

www.gfmall.com it lists many, many compnaies who deal with GF products.

my favorite companies right now are Kinnikinnick & Glutino.

Living Without is a wonderful magazine too.

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S.D.

answers from Milwaukee on

There is a company I just heard of called Wildtree, they have 80% gluten free products and they are pretty reasonable.

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A.M.

answers from La Crosse on

http://www.livingwithout.com/

They have a lot of ideas and articles, as well as cookbooks. It's a great magazine. Sometimes it's just nice to know that you aren't the only one dealing with this.
Good luck!

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A.H.

answers from Cedar Rapids on

Hi!
Life without gluten can still be very fulfilling. Adapting recipes is a way of life for me. You can find many recipes at HyVee health market. As you learn, you can adapt. Here are some of my standbys:
1. Keep meals simple. I serve a protein, a grain, and something raw. Ex: egg, rice cake & apple is a common lunch at our place. A meat, rice & raw carrots is a common dinner.

2. If you really want to bake treats, the key is mix non-gluten flours. I use 2 parts brown rice flour, 1 part potato starch, and one part white sorghum flour. You could also use arrowroot starch or even corn starch in place of the potato starch.

You can buy brown rice flour & potato starch in bulk at Frontier Coop from Norway IA. They do mail order too. If you are in Cedar Rapids try the Health Hut and Hy Vee health market. Bob's Red mill has many various flours. You can mix and try different things. I often use almond meal for a little body and extra protein. I find baking quick breads (muffins, banana bread) and cookies are quite successful with these flours. Don't bother with sandwiches or other breads--no need. If you want those, there are many mixes out there that are good. I like to get them once in a while, bake a loaf, slice it and freeze it. Then I can pull out a piece at a time and it doesn't go bad. The rest of the family can eat regular bread.
Best wishes! It feels daunting at first but it is very do-able.
A.

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T.O.

answers from Minneapolis on

There are so many great recipe books and guidance books to help you with this. I'm not sure where you live, but in the Twin Cities there is a support group for people with gluten allergies. I have heard that they are very helpful with helping you get on the right track to a healthy gluten free diet. Here is the link to their website

http://northlandceliacs.fastmail.fm/index.html

Good luck with this.

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A.P.

answers from Cedar Rapids on

I would recommend going to see a dietitian. I used to work with the outpatient dietitians at St. Luke's and they are fabulous. You can find lots of gluten free food out there and pay lots of money (Hy-Vee has a large section). But if you go see a dietitian, she can teach you how to provide your child with a gluten free diet that is balanced without emptying your bank account. Be sure you see a REGISTERED DIETITIAN and that she has a referral from your child's doctor with the little one's medical history. And you may want to confirm or rule out the lactose intollerance prior to seeing the dietitian, so that she can cover both in one visit if needed. The whole visit will cost about $110 (EXTREMELY WORTH IT), but will make your life much easier. Insurance also may or may not cover the visit. I would also like to say that support groups are a wonderful resource, but sometimes there is such a thing as too much information. You need only the information necessary to help your child. In response to Deloris N's advise...please note that her son was diagnosed 20 years ago. He may not have even truly had Celiac disease. Food allergies are serious! I have two cousins with peanut allergies that have to keep epi pens on their person at all times. Do you know what happens if they eat peanuts and don't take the proper medication immediately...they die! Celiac disease certainly does not cause the same immediate allergic reaction, but can definitely cause damage to the digestive system over time. I applaud you for doing everything necessary to help your child. I am not giving you this additional information to scare you, but I thought it imperative to point out the dangerous flaws in what Deloris stated. Managing your child's diet to prevent the "symptoms" of the disease IS how the disease is treated. You would not give a gallon of Kool-Aid to a child with diabetes and not expect it to cause his or her blood sugar to skyrocket...would you? If you do want to go to St. Luke's (in Cedar Rapids) call ###-###-#### and they can walk you through how to get a referral from your doctor. Good luck!

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A.L.

answers from Davenport on

One of my favorite treat brands is the Cherrybrook Kitchen. They have gluten free mixes for cakes, cupcakes, pancakes etc.

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K.L.

answers from Minneapolis on

Hi J.- my kids are both gluten sensitive and we've followe d GFCF for 3 years. I do not cook much in terms of baking breads or muffins - but there are several resoures that are available. Best one so far has been Living Without magazine basically discusses majority of food allergies but ALOT on specifically Celiac/Gluten allergies.

Twin Cities ROCK is another local resource for info, I've not found them particulalry helpful since my kids are Autism spectrum/Metabolic disorder not Celiac diagnosed.

Easiest way to go GFCF is to stick to whole foods- not prepared foods or boxed then add in or use as sides any condiments that are safe. Basic meats, steamed veggies and safe pastas from Corn, Rice or Quinoa. GFCF is a lower protein diet too, so you might have to be cautious about growth.

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D.J.

answers from Minneapolis on

My three year old daughter was diagnosed with Celiac disease in February. After just two weeks of a gluten free/lactose free diet we saw her symptoms virtually disappear. We were told that her lactose intolerance was probably a result of celiac disease and would be temporary. Sure enough, after three months we tried dairy again and she has absolutely no problem with it. She has also grown over two inches since February (she had all but stopped growing because her body was not able to absorb nutrients due to the gluten in her diet).

Finding gluten free (and lactose free) food can seem daunting at first, but I assure you there are many, many options. Of course you can buy "gluten free" products. These can be expensive. However, you should know that you can buy them online in large quantities at a discount through Amazon.com and glutenfreemall.com. A couple of products I highly recommend especially for kids - Pamela's Pancake and Baking mix (great for pancakes, waffles, cookies, muffins, etc.), Glutino Gluten Free Crackers, Glutino Cereal (apple cinnamon and honey nut cherrios type cereal), Glutino Pretzels, Ian's cookie Buttons, Ian's french toast sticks, Van's waffles, Trader Joe's (if you have one) Pancakes and waffles, Midel's gingersnaps and animal crackers, Kinnikinnick Cake Mix, Gluten Free Pantry Favorite Sandwich Bread, Envirokidz Bars, Fruitabu smooshed fruit, Tinkyada rice pasta.

Also, many mainstream products are gluten free even though they do not reflect it on their label. There are several helpful resources. The first is the Gluten-Free Grocery Shopping Guide. It lists thousands of regular grocery store products that are gluten free (yogurt, applesauce, hot dogs, ice cream, sauces, etc.) You can buy it for $25 at cecliasmarketplace.com. Another is the Wheaton Gluten Free Support Group list of gluten-free mainstream products http://homepage.mac.com/sholland/celiac/GFfoodlist.pdf. Celiac.com also has a gluten free (www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-Lis... gluten containing list (celiac.com/categories/Safe-Gluten%252dFree-Food-List-%7B47%7D-Unsafe-Foods-&amp%3B-Ingredients/) of ingredients that will help you read labels. This site also has general information that will help you understand the disease. Another good general site is twincitiesrock.org. This is a support group for parents with children who have celiac disease. They have regular meetings and I understand they share recipes and product ideas. We have not joined yet, but have definitely visited the site for information. I also end up calling manufacturers, visiting their web sites or just searching for the product name and gluten free on google. I can usually find someone else who has been able to confirm whether the product is gluten free if I am not able to get in contact with the manufacturer right away.

Our house is essentially gluten free and we are able to do with with no problem. My daughter has cereal, frozen pancakes, waffles or french toast for breakfast. She can also have eggs, bacon, sausage (just have to buy the right brand). For snacks she has gluten free pretzels, string cheese, peanut butter on celery, cheese and crackers, fruit, yogurt, etc. For lunch she can have peanut butter and jelly sandwhiches with gluten free bread, hot dogs (no bun), lunch meat or sandwiches, cheese, fruit, cottage cheese, macaroni and cheese (velveeta and rice noodles), soup, etc. For dinner we have meat or fish with potatoes, rice, pasta (rice noodles and vegetables, pasta (rice noodles), enchiladas or tacos with corn tortillas or taco shells, etc.

Sorry to overwhelm you with so much information. I hope it is helpful. The first couple of months is a big adjustment, but then you figure out what you can buy and it become alot easier.

I also want to assure you that my daughter has adjusted very well. She has her "special" food and she is perfectly happy. I think it will be easier in the long run that she will have virtually no memory of or taste for gluten containing foods. You should be aware however, that celiac disease is genetic. You or your husband or both have the genetic markers for the disease. The disease however, also requires an environmental trigger (e.g. stress, illness, pregnancy, etc.) So you, your husband and your other children definitely want to watch for symptoms and may also want to consider being tested for celiac disease because some people do not have obvious symptoms.

Best of luck to you and your family.

D.V.

answers from Milwaukee on

Hello! I just joined Mamasource and saw your request. I too, have Celiac Disease and have been living a Gluten-free lifestyle for over 20 years. I have tons of experience cooking gluten-free recipes and have developed many of my own. It may take me awhile to get a number of basic recipes together, but, if you would like I can include a number of them in another response to you. Let me know how I can help!

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A.B.

answers from Fargo on

You will be doing a lot of label reading from now on! I have a cousin with a gluten allergy as well and I have to read labels, too, when his family comes to visit. The main things we look for on the labels is wheat and modified corn starch (I believe that's the 2nd one). If you're in Fargo, there's a small grocery store that they do a lot of their shopping at. I can get you the name if you'd like, but I don't know it off the top of my head. I could also probably put you in contact with him/his wife to get some great gluten free recipes. Let me know!

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T.H.

answers from Bismarck on

My husband has celiac disease, and basically unless you are going to make everything homemade you are going to have to spend more money on your child's diet. We have lots of recipes that we could make (if we had the time) but you also are going to be spending the money keeping all the ingredients on hand to make these items. Good Luck and hopefully you can find a happy medium!!

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K.S.

answers from Minneapolis on

Hi J.,
So glad you got this figured out for your child. There is a lot of support out there now.

I have an on-line store and we have a gluten free cookbook. You can contact me at [email protected]____.com if you interested in that.

Also, go on Trader Joe's website and you can email them. They will email you with a whole list - several pages long - of gluten free products that they carry and they are very reasonably priced. There is a store in Maple Grove. My kids love the gluten-free pancakes and the gluten free peanut butter cookies from there. And so many more products as well.

This is really a big adjustment for the whole family. My son had Down syndrome and we were just discussing it at our parent group the other day. 2 of the moms have kids with Celiac. If you're interested, I could also put you in touch with them. I asked about bread and they suggested a bread you can get at Cub that is a mix called Market Pantry. Cub has a section of gluten free foods, so ask at the store for them to direct you to this section.

Good luck,
K.

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C.S.

answers from Minneapolis on

I do not have a gluten allergy, but thought that I did. Also I have a friend that has it. Gluten is in almost everything! Even things you may not think about like soy sauce. Anyway, I went to the local coop because they have the shelves labeled with different colored dots to reflect a certain ingredient free product. It made finding the right products easier. Some things were more expensive, but once I got used to what the products were I could find them elsewhere.

I do know there are some good websites and I even got some recipes online. I don't know them off hand, but think I just googled them in the first place. Our coop has gluten free cooking classes and there are even some through the community education.

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J.F.

answers from Minneapolis on

Hi J. - Unfortunately I don't have any advice for you, but was wondering why they started testing your 17 month old? My 15 month old only weighs 15 pounds and has undergone testing for many things, including Celiac Disease, to find out why she isn't "thriving". The doctors are stumped at this point and I'm wondering if you have any other thoughts on what the issue is, since you went through testing wiht your 17 month old.

Thanks -
J.

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S.H.

answers from Green Bay on

Hi J.,
I do better when I don't eat Gluten. I've never been tested but I just notice so I avoid it. I was on the search for the best gluten free cookbooks. Here's some I've used. The Gluten free kid (might be good for your older children to help understand your 17 month old). Gluten Free quick and easy by Carol Fenster. I find her recipes quite tastey and I like that she has mixes so it's easier that we too. She does list non-dairy alternatives. She uses Sorghum flour which is quite good. There are many good books out there. Feel free to contact me if you wish, I have been doing this many years.
Peace and blessings,
S.
Homeschool mom and home business owner

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A.W.

answers from Des Moines on

J., I don't know much about celiac disease except my sister just got diagnosed with it. A friend had forwarded me a website where products could be ordered from:
www.tasteslikerealfood.com

She apparently imports these products from Norway where celiacs is more common so they've come up with more creative and tasty food alternatives.

I have no idea if the food is good, or expensive...but looking online is free :) Good luck!

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T.M.

answers from Des Moines on

I have a friend that has celiac's, and have learned from her that Campbell's health food stores have a gluton free section. Also there is a support group that is nation wide, and they put out a book that tells you what restaurants in each state has a gluton free menu. There's also a card they gave her that lists all of the words that you have to watch for when reading ingredients to know if a product has gluten in it.

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B.R.

answers from Des Moines on

Hi there-
My sister-in-law has celiac's and I have learned a lot from her about the disease since she was diagnosed four years ago. First, it would be simpler for you to prepare meals that are gluten-free for the whole family at meal times like dinner so that you don't have to worry about cross-contamination or your little one helping herself to what is on the table next to her. To start, I would just eliminate bread, pasta, and prepared sauces (cream of anything soups) and stick to meat, veggies, potato, or rice for dinner. This is a much more affordable way to make the transition than trying to purchase rice flour and corn pasta in the beginning. Start reading labels and you will learn what brands are safe without having to spend oodles of money on gluten-free foods. Lots of foods are naturally gluten-free if you stay away from pre-packaged, heavily processed foods. As far as bread, most of the kinds you can buy already made are pretty gross, I would suggest buying a bread maker(use only for gluten-free bread) and getting a good gluten-free recipe. Make bread once a month and freeze. Then for lunches your little one can still have peanut butter and jelly like the other kiddos. Hope that helps some!
B.

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L.M.

answers from Des Moines on

I don't know where you live, but in the Des Moines area there are health food stores called Campbell's that are very knowledgeable about foods. You could go in & have some discussions with the staff. Those types of stores are most helpful. Also if you have Hyvee stores, their health market department will have many gluten free items. I have food allergies in my family, & as hard as it is as first, it's worth feeling better to make the changes. And the positive thing is there are more foods every day to accomodate this diet, so don't be discouraged. The more you know the better you will feel. Bless yoU :)

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B.K.

answers from Minneapolis on

Hi J.,

I'm sorry I dont really have any info for you, but was wondering if you could enlighten me on how it was finally determined to be celiac disease. I have 18month old twins (boy/girl). My dtr seems to have GI problems and major bloating,etc, but they havent quite gotten to the bottom of it yet. She's seen a pediatric gastroenterologist and follows up again next month (certainly Celiac disease is one of the possibilities they are looking at). Just wondering if you could share a little more about your personal experience on this. Sorry to hear about this new stressor, but it does sound like there's a lot of good advice out there. Thanks,

[email protected]____.com

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H.C.

answers from Omaha on

hy-vee does have a great selection if you have one in your area. You may need to ask them to carry more in stock and they will. My husband, father-in-law, and both my sister in-laws have celiac. The youngest was eight when diagnosed. Walmart is getting better about labeling gluten free on products, I have found this a huge money saver. They have tortilla shells out that are made with rice, they can be good made into a sandwich. Also I would invest in a bread machine and plan on making bread, it is too expensive to buy and tastes better. We have found that it is best to make dinners and to plan meat, veg, carb, and fruit separate, no casserols in this house. Walmart also carries a GF pasta this is ok, but you must rinse in cold water as soon as it is done cooking or it will turn to mush. A favorit of my SIL is Mac and cheese, you can make it with the GF pasta and Velveta. Please email or call with any questions. Depending on the severity of the allergy you may be able to still make rice krispy bars, the only problem may be that the rice krispies are not made in a GF factory therefore trace amounts may be in the cereal. Some of my family can eat them and some cant

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M.S.

answers from Sioux Falls on

I am sorry for your new stress. I found a web site that has gluten free recipes, www.bestglutenfreerecipes.com . They eamil you recipes that the whole family can eat. Good luck, I hope this helps

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S.L.

answers from Minneapolis on

I haven't read all the responses yet. I only have a couple minutes. I know what you are feeling. My son was diagnosed at 18 months and our journey of diagnosis was very stressful. He was terribly sick.

There is a group called ROCK (Raising our Celiac Kids) and the support is amazing. There is a website htttp://www.twincitiesrock.org that has some good starting info.

Also a good buy would be either "Celiac for Dummies" or Danna Korn's book, "Kids with Celiac Disease". I'd recommend either. Betty Hagman has great cookbooks that have good flour mixtures for baking and cooking. They also sell a general gluten free flour mixture, but we have found that it doesn't taste the best with some recipes.

As for food, fruits and veggies are my son's favorites. There are also great bars from Envirokids (peanut butter, chocolate, or berry) that he loves. For on the go, Dum Dum suckers, or most fruit snacks are easy. Fritos, and Cheetos are some solid junk food ideas.

I know you are probably a bit stressed right now, but I assure you that it is do-able and your child will be so much healthier and feel so much better! My oldest is able to eat gluten so we buy regular bread for her,etc. We're waiting to see if our littlest guy has it...we're keeping him gf until he's one and then we'll start trying things out.

Good luck.

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D.P.

answers from Milwaukee on

Go to the library they have numberous cook books for special needs. There is probably a web site that also deals with this issue.

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B.J.

answers from Minneapolis on

Hi J.-
Gluten is in so many process foods- so stay away from the middle section of the grocery stores- a good way to avoid those foods.
I have clients who use a shake mix- choc and vanilla- that is gluten free. You can drink it as a meal- super- or use it in recipes like pies and bars (meal too but more variety). If you'd like more info- email me and put momsource in the subject line.
B. J
47 yo med. prof, wellness coach, mom to 7 yo twin girls
[email protected]____.com

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T.N.

answers from Minneapolis on

Trader Joes and Whole Foods both have a big selection. It might be easiest to research online for specific brands and then look for them instead of visa versa. Either way, you'll have a good experience finding things at those two stores.
On a side note, I just bought a box of brownie mix, by CherryBrook Farms, at Target and that was Gluten free, so it's becoming more widely available. Good luck!

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A.G.

answers from Fargo on

glutenfree.com.... my fiance's ex-wife uses it for their 2 kids that have Autism. Its a great sight it offers cookbooks, suckers, candy. Also, trying finding another parent who you can split some of the cost and you can split some meals. I'm from St Cloud so I know its not easy to find Gluten Free. Check with St Cloud Hospital they may have some other cheaper places... I know if you go onto their (Centra Care Health Systems-St Cloud Hospital) website and type in celiac disease it gives you a bunch of info including How to make an eating plan. Hope all that helps...

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K.A.

answers from Grand Forks on

This is such a worry for parents. I was just at a food show last week and there is a company that sells gluten free foods-You can go to their website www.800-45-SYSCO.com and do a search by diet to get some ideas. They said to carefully read labels and stay away from anything with oats, wheat,rye or barley in them -or any by product of those things.Good luck with your search-seems like you are on the right track.

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N.F.

answers from Minneapolis on

I do not know much about celiac disease but this lady's blog is mostly gluten free recipies http://crockpot365.blogspot.com/

Also this brand of snacks is mostly gluten free, organic, low in sugar, etc www.snikiddy.com The puffs are soo good (as are the cookies!) You can get snack packs at Sam's and big bags at Whole Foods.

HTH N.

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