Mothers of Children and Infants with Celiacs, Please Answer!

Updated on April 04, 2011
L.L. asks from Austin, MN
8 answers

So, 11 month old daughter is getting ready to be tested for Celiacs, which pretty much explains all her symptoms.

I am just wondering (more for my own confirmation, and sorry to ask such strange questions)...

for those of you who have had babies with the disease, what color were their stools before they were diagnosed? What were they like? When did they get their first teeth? And when did you get the diagnosis?

Also, and I know I could find this out through research, but what are some of your favorite replacement foods?

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answers from Minneapolis on

My daughter did not test positive for celiac, but is indeed sensitive to it. She is on a gluten free diet. I really like for recipes and information on substitutions. There is another on that I think is They have links for all sorts of info. The best thing we did was join a support group! We are part of Celiac Foundation of the Twin Cities. There is also one called ROCK for families with celiac children.

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answers from New York on

My son does not have celilacs but I do. It took man years for me to get diagnosed, but once I was, and got off the gluten, I was just fine. I take a multivitamin now and try my best to eat properly. I think Im doing pretty good. Before I kicked the gluten, I had diarrhea like all the time and constant stomach cramps. You can have gluten sensitivity without having celiacs, btw. A good to test for that is through a stool sample. You can a buy a test online at I have personally had great experiences with this lab.

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answers from Seattle on

My son has just been diagnosed with celiac from blood tests. We went and saw a pediatric gi specialist who said we could go off the blood work, which he has tested positive for 3 times, 2 times because he is in a diabetes study and they start testing for celiac at 2 years. We have opted to not do the biopsy and are going to see the pediatric nutritionist in a few weeks. My son has always had loose stools with varying colors, but not diarrhea. I don't think the color has anything to do with celiac. I would ask the pediatrician about the lose stools and she said they were normal because of not being potty trained. We have been cutting out gluten and I have noticed a change in his stools, they are getting firmer. My son got his first teeth at 8 months and then 2 more around every 2 months after that. Annies has gluten free snacks and we also eat Nature's Path cereals that are gluten free. I have been testing out different flours for making things like pancakes and breads Teff and Amaranth are my favorite right now for pancakes. There are a lot of good blogs out there. Check out and

Trader Joes carries a lot of gluten free products and they have the Nature's Path cereals. We also eat a lot of gluten free oatmeal, rice and quinoa, we love quinoa. I have also just bought a bread machine that has a gluten free setting on it and some Pamela's baking mix. I haven't tried it out yet, as I due tomorrow with my second and just don't have the energy yet :) But soon I will try that out. I also talked to a friend whose daughter has celiac and she said you need to get a new toaster and also change out all of your wooden spoons because they absorb gluten. My son also loves rice noodles. Hope this helps! Feel free to email me if you have anymore questions.

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answers from Chicago on

I have gluten sensitivity....! All I can say is that if they confirm Celiac for your daughter...please please see a nutritionist for her. It will help you tremendously on what foods to give her and what to avoid in addition to menu options...I am sorry but can relate to a certain degree about this. Hugs

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answers from Omaha on

My son was diagnosed with blood test and biopsy, the gold standard test. My older son also blood tested positive but the biopsy confirmed he does NOT have celiac. Gluten-free foods are everywhere, they're just more expensive, but even Chex are gluten-free. celiacsprue assoc ( is a great resource. Thy provide online and local support groups, resources, and even an i-app of their gluten-free product listing. I agree about seeing a nutritionist. It's different, but it's very do able.

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answers from Madison on

Everyone in my family has a certain degree of gluten intolerance--my daughter mild, my husband moderate, and I'm severe. My husband and I also are intolerant to soy, and we also have an allergy to casein (cow milk products), which we suspect my daughter is also getting (she was allergic to cow's milk as a baby, grew out of it, and has the potential to acquire it again). We were diagnosed 3 years ago; I was 40, my hubby was 37, and my daughter was 7.

I find it much easier to live with a gluten intolerance diagnosis than I would with a Celiac disease diagnosis. Because Celiac is an auto-immune disease, you cannot have any amount of gluten/gliadin at all. Nada. Whereas with intolerance, you can have some gluten/gliadin--sparingly--depending on what your reaction is and what symptoms you get when consuming gluten/gliadin. In a perfect world, you shouldn't eat anything with gluten/gliadin, even with gluten intolerance--but we don't live in a perfect world. And once you start reading--really reading--ingredient lists and note all of the many, many different ways that gluten is hiding in ingredients, you'll begin to see how hard and difficult it truly is to stay away from wheat, barley, rye, and all of the many different derivatives made thereof.

It is a lot harder and a lot more restrictive to live with a Celiac disease diagnosis. Basically, you have to cut out just about all premade/packaged convenience foods (unless they're specifically gluten free products) as well as fast food. Even if a restaurant states they do gluten free--it usually means one or two items are gluten free, and that's all the choice you get. An example is Panchero's Mexican fast food. The nacho chips (corn), salsa, guacamole, are gluten free; you can have a burrito minus the burrito (there is no substitute offered); and only the chicken and pork are gluten free (the beef has both gluten and soy in the sauce mix.

Many times, if you take the meat off the bun, you're okay if you have gluten intolerance to just eat the meat. However, if you have Celiac disease, not even a gluten bun should touch the meat--otherwise, the meat is contaminated with gluten. So for a Celiac person, just taking the meat off the bun wouldn't work; the meat would have to come out of the kitchen having never touched any bread (ditto for no croutons on a salad. If the salad comes out with croutons, an entirely new salad has to be made because the croutons have contaminated the salad).

Another restaurant that offers gluten free would be Uno's Chicago Pizzaria, which just started offering gluten-free pizza about 9 months ago. They have three types of pizza (pepperoni; vege--mushrooms, peppers, onion; and cheese) that they make up in a dedicated area in the morning, then freeze and take out when needed. I called and asked if they could also do goat cheese instead of cow cheese and was told by our restaurant in town that if they had a day's notice, they could modify the recipe. But the ability for us to just spur of the moment order a gluten-free pizza from them is gone because of our casein issue as well.

I subscribe to the magazine Living Without, which covers a wide expanse of all food allergans but devotes most of its pages to celiac disease/gluten intolerance. They have some wonderful recipes inside, and also on their Web site that you might want to check out. I stay away from those "chefs" who post recipes--only you have to buy their flour replacement mixture in order to make their products. Living Without gives you lots of substitution ideas at the back of their magazine, as well as various flour substitution mixtures.

I agree, attending a gluten free group is a lifesaver for most people, at least until you understand the disease and get homemade cooking gluten free under your belt. I belong to MAGIC here in Madison, WI. Great organization. However, I always caution that if you have mere gluten intolerance, the Celiacs in the group tend to look down upon you. Like you and your problems aren't as serious or demand as much attention as theirs. This is an outlook shared by other friends of mine who are gluten intolerant.

Another thing I have noticed since traveling the gluten free path: Usually those people who test positive for Celiac disease also test positive for lactose intolerance (usually, you can still eat/drink cow milk if you take lactaid products or buy lactaid milk). For those of us with gluten intolerance, I am finding that many of us are testing positive for casein allergy (or whey allergy, the other protein in cow's milk), which means NO cow dairy products at all. However, many of us find that we can still eat and absorb (and not get sick from) goat or sheep milk/products. Something to do with a specific enzyme or amino acid that's in cow's milk that is missing in goat and sheep. We also drink or use other milk alternatives, like almond, rice, hemp, oat, coconut, and hazelnut. Just an FYI.

Our MAGIC group has a large gluten free library of recipe books, which we're allowed to check out. That would be another way to find some recipes.

Basically, it's trial and error and getting your child (and your family--you and your husband and other siblings) to retrain your palate to eat healthier and more organic fare. There are many companies now making gluten-free products--but the taste of many of them isn't always the best. Also, the shelf life of baked products is very short--which is why the mixes bought at the store don't make big batches. Some goodies, however, can be frozen, which will extend life/great taste. And of course, anything you make at home in your own kitchen will make a larger batch.

If your daughter tests positive for Celiac, you'll have to replace the toaster (so that no gluten crumbs come into contact with her food), and probably other pots and pans and culinary tools. We didn't have to go that extensive; again, we don't have Celiac. However, I did buy a replacement toaster, since we only eat nongluten bread in the house, and kept the old toaster for when company comes (my parents bring their own bread to eat, so they need a toaster).

Some books that have helped me enormously and might be of help to you:

1. Recognizing Celiac Disease: Signs, Symptoms, Associate Disorders & Complications by Cleo J. Libonati, RN, BSN, with foreword by David M. Capuzzi, MD, PhD

2.The Gluten Connection: How Gluten Sensitivity May Be Sabotaging Your Health--And What You Can Do To Take Control Now, by Shari Lieberman, PhD, CNS, FACN

3. A Patient-Expert Walks You Through Everything You Need To Learn and Do The First Year: Celiac Disease and Living Gluten-Free; An Essential Guide for the Newly Diagnosed, by Lules E. Dowler Shephard with forword by Alessio Fasano, MD

4. Celiac Disease: A Guide to Living with Gluten Intolerance, by Sylvia Llewelyn Bower

5. Celiac Disease: A Hidden Epidemic, by Peter H.R. Green, MD and Rory Jones

6. Gluten-Free Girl: How I Found The Food That Loves Me Back...& How You Can Too, by Shauna James Ahern

I have found all of these books to be highly informative and very easy to understand for the average person.

And lastly, some great replacements for wheat, rye, and barley are the grains/grasses: teff, quinoa, corn, rice, amaranth, chia seed, flaxseed, millet, and wild rice. I'm sure I'm missing some; you'll discover lots of variety as you explore different options for your family. Chickpea is another good alternative, as are other legume flours and nut flours. Two gluten-free breads that you can buy at the store ready-made are Udi's (white or multigrain and cinnamon raisin) and Rudi's (white, multigrain, two other flavors). I buy most of my products at Whole Foods or Woodman's here in Madison, WI, as well as a few GF products and organic foods at COSTCO and Willy Street Co-op. I do not like Trader Joe's.

Good luck to your daughter and your family. If you'd like more information, please don't hestitate to contact me.

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answers from Eugene on

First teeth four months. Stool looked like yellow cottage cheese with mucous in it. Many stools per day when the disease was triggered. Could be quite quiet when I hit upon the right diet.

I am a carrier so I have eczema and allergies. My daughter has the disease and her son is a carrier.
The current way of handling the disease is not what I did and she "outgrew" it at two years of age.
I then embarked on an organic diet. We were vegetarians and used no sugars. You can contact me and I'll help you with recipes and ways to control her diet until she develops the ability to digest a wider variety of foods.
My daughter can eat foods with gluten in them on a very sparing basis.

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answers from Green Bay on

Please don't consider this spam - just delete it if you are not interested, but Shaklee carries a lot of supplements and protein products, etc. that are gluten free.

Contact me for a website to browse if you are interested. No obligation, of course.

[email protected]

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