lbsteenwyk

Here is a thread that ran several months ago with lots of good menu ideas for kids:

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I make a big batch of homemade gluten-free waffles on the weekend and freeze them; You can pop them in a toaster oven for a couple minutes (crispier) or microwave them for a quick breakfast. I also make muffins to heat up during the week when my husband is in charge of breakfast. This is not quite as quick, but we also make french toast using gluten-free bread. My husband can do this, so it must not be too hard.

Debbie:

I looked at your daughter on a standard growth chart. She is at the 25th percentile for height, but at only the 3rd percentile for weight. If she has been on the lower end of the growth charts all along, this may not be of much concern, but if you've been seeing a steady decline over the past year or two, I think this indicates a problem. Anything below the 5th percentile for weight should cause your doctor to investigate further.

Jessica:

When you contacted these companies, did you email them or contact them via regular mail? I am starting a celiac support group next month and want to begin working on getting product samples. Any tips you have are greatly appreciated!

I looked at the pork injected with broth solution at my local Walmart yesterday. Here are the ingredients:

Pork broth, potassium lactate, salt, phosphates, natural flavoring, ascorbic and citric acid.

As far as i can tell, natural flavoring would be the only questionable ingredient. I have not checked with Walmart yet about the source of the natural flavoring. Has anyone else?

Since she was diagnosed years ago, she may be over-restricting her diet. There are some ingredients that celiacs can use that were once restricted - vinegar for instance. Here are a few links to current diet information.

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Definitely try the diet first! Steroids have some nasty side effects and sometimes they are hard to get off of, too. It doesn't sound as though your symptoms are that bad. I would never take a steroid med unless as a last resort.

I read an article recently about endoscopies and biopsies in celiac disease patients. It said that occasionally there are "suggestive" changes in the duodenal mucosa that can be seen during the endoscopy with the naked eye. I can't remember if these were described as nodular. I have the article at work and I'm at home now. Anyway, I think your doctor was may have been saying that he was suspicious of celiac just because of the way the mucosa looked, but of course he doesn't want to say your son has celiac until the biopsies are examined microscopically.

I called horizen about 6 months ago. They do not add gluten to their yogurt, but like Dannon, won't confirm that the flavored yogurts are gluten-free because they outsource some of their flavoring ingredients. I did not ask specifically about the vanilla. We don't use their brand now.

Rebecca: I went to Enfamil's webpage on nutramigen and found this:

Potential Allergens

The ingredients in Enfamil Nutramigen LIPIL are hypoallergenic. Rarely, however, allergic reactions to extensively hydrolyzed casein formulas have been reported.

It would be unusual, but your baby may be sensitive to the casein, even though the proteins no longer resemble those in intact cow's milk. Here's the webpage:

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I'm glad to hear your family is supportive of your decision to keep Ella on theGF diet!

I think you're making a wise decision not to pursue further testing. Your poor daughter has been through enough doctor's visits. I would make one last call to your doc to see if he actually did order a TTG or EMA, get a copy of the results if he does have them, and then RUN like he**. This guy sounds like a real idiot. I work with docs all the time, and trust me, I've seen a lot of stupidity! Sometimes I think arrogance and ignorance are prerequisits to get into Med School! There are a few good ones, though, so keep looking until you find a supportive doc. I hate to make generalizations, but I've found female MDs to be better listeners and more open to the patient's input.

Good luck to you as you delve into the gluten free life!

Shannon:

Your doctor is full of crap!!! This makes me so angry. Find another doctor who will support you in your decision to keep your daughter gluten free. Ella sounds like she is having an amazing response to the gluten free diet. Are you getting support from your spouse and other family members to keep her gluten free? Have others close to her been seeing the huge improvement as well? I know it is harder not to have a definitive diagnosis for your child when other family members are not being supportive.

My daughter was never positively diagnosed with celiac disease, but I've been fortunate in that my husband and both sets of grandparents have been supportive of our keeping her gluten free. This was largely because they saw the huge improvements in her for themselves.

Judi:

Where does the UltraClear Plus supplement come from? Is your doctor going to sell it to you? If so, I would be highly suspicious of his motives.

I don't remember who told me, if it was the diabetes nurse educator or his endocronologist?  I will try to find out.  I'm pretty sure it was his endocronologist.  He is from India, and tested him within a month of his diagnosis of diabetes, for celiac.  He seems to think it is extremely common.  We don't have another appointment for 2.5 months,  but occasionally talk to him on the phone.  He is extremely nice, but busy,  so I'll ask next time we talk.

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Thanks, Lucy; I'll appreciate any information you can get. In the meantime, I'll try doing a literature search and see what I come up with. If I find anything interesting, I'll let you know.

Lucy:

Do you have a reference for those numbers? I don't doubt, it's true, but I try keep up with current research so I can share it with docs I work with. I'm always advocating to get type 1 diabetics tested for celiac disease, so if I have a reference to current research that indicates the numbers are this high, it would really help. THanks!

I don't know the science behind it, but I think this is simply because undiagnosed celiac disease makes people more susceptible to other autoimmune disorders - Type 1 diabetes is also an autoimmune disease. Between 3-8% of children with Type 1 diabetes also have celiac disease.

As a registered dietitian (RD), I can attest that many dietitians are not up to date on celiac disease. Before you go to your appointment, I suggest calling her and asking how much experience she has had counseling patients, how often she sees celiacs, etc. Ask if she can give you information on label reading, hidden sources of gluten. If she doesn't seem to have much knowlege, pass on the appointment and find an RD who specializes in celiac disease. I'm pasting below a recent post of mine on how to find an RD:

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.

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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.

Also, here is a pamplet from the Gluten Intolerance Group of North American (GIG) designed to explain celiac disease to teachers. I've given this to my daughter's teachers and the director of her preschool.

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Good Luck!

Have you and your husband been tested yet? One or both of you may have celiac disease and simply be asymptomatic. Children typically have much more obvious symptoms than adults. It is now thought that the majority of adults with celiac disease have an "atypical" presentation with few symptoms, or "silent" celiac disease with no symptoms.

I think it is actually easier on children who are diagnosed earlier. My daughter began the gluten free diet at 26 months. I really didn't explain it to her until she was 2 1/2 and then only in very simple terms; at this age they accept what you tell them as the truth. If you say, you can't eat gluten because it makes you sick, they will believe you and the gluten free diet will just be a way of life for them. At least that's they way it was for my daughter. She never questions why she can't have gluten and just accepts that she can't have it. If she was just being dx now, we'd be having a much harder time!

I usually tell people that there has been a lot of new research on celiac disease in the past decade and that we now have new information that children do not outgrow celiac disease. As Tarnalberry said, symptoms in adulthood often seem to resolve, but the autoimmune response is still occuring and still damaging the body. Teenagers often experience a period of having few if any symptoms and this is why doctors used to think that children outgrew the disease.

I agree with Merika, you should breast feed as long as possible. It's the one factor you can control to decrease your child's risk of developing celiac disease. My daughter was introduced to gluten during the recommended "window" of 4-6 months and she still developed celiac disease, but didn't have symptoms until about 20-22 months. She was breastfed for 1 year. I also introduced my son to gluten between 4-6 months, but he's received much less of it simply due to the fact that we have fewer of these foods in the house now. He has had no symptoms of celiac disease at this point. I think it's basically a crap shoot. The two factors in your control are breastfeeding and gluten introduction; there are probably other factors that research has not yet uncovered.

Always start with the smallest recommended dose and see how that affects you. Remember to drink the recommended about of fluid with the fiber pills.

Lucy:

Try approaching this from the perspective that you really care about their son and don't want to see him go through what your son has (if your son was very sick at diagnosis). Also you might mention that if he does have undiagnosed celiac disease, he is at greater risk for developing Type 1 diabetes, like your son. The thought of their child having diabetes may be a lot scarier to them than the possibility that he may have celiac disease. I wouldn't drop the subject, but don't be pushy either. Just continue to mention periodically how concerned you are. If they don't think he has it, what would the test hurt? If it's negative they will be right and everyone will feel better. Have you offered them any articles on celiac disease and growth/developmental delays in children? Or are they not even receptive to reading something?

I have tried it! I ordered it a couple weeks ago based on your recommendation. I've been meaning to post about it. I've only tried it in 2 recipes so far, both were baked goods - dinner rolls and bread. It does have a distinctive flavor, but good - I do want to try it with chicken, but haven't had time. I will try your recipe. Does your son like it? My daughter is very picky, so I'm always looking for things she might eat!

I though this article was very interesting. I am pasteing the abstract below.

JF Ludvigsson, SM Montgomery, and A Ekbom

Celiac disease and risk of adverse fetal outcome: a population-based cohort study.

Gastroenterology, August 1, 2005; 129(2): 454-63.

Background & Aims: Studies of maternal celiac disease (celiac disease) and fetal outcome are inconsistent, and low statistical power is likely to have contributed to this inconsistency. We investigated the risk of adverse outcomes in women with celiac disease diagnosed prior to pregnancy and in women who did not receive a diagnosis of celiac disease until after the delivery. Methods: A national register-based cohort study restricted to women aged 15-44 years with singleton live born infants was used. We identified 2078 offspring to women who had received a diagnosis of celiac disease (1964-2001): 1149 offspring to women diagnosed prior to birth and 929 offspring to women diagnosed after infant birth. Main outcome measures were: intrauterine growth retardation, low birth weight (<2500 g), very low birth weight (<1500 g), preterm birth (<37 gestational weeks), very preterm birth (<30 gestational weeks), and caesarean section. Results: Undiagnosed celiac disease was associated with an increased risk of intrauterine growth retardation (OR = 1.62; 95% CI: 1.22-2.15), low birth weight (OR = 2.13; 95% CI: 1.66-2.75), very low birth weight (OR = 2.45; 95% CI: 1.35-4.43), preterm birth (OR = 1.71; 95% CI: 1.35-2.17), and caesarean section (OR = 1.82; 95% CI: 1.27-2.60). In contrast, a diagnosis of celiac disease made before the birth was not associated with these adverse fetal outcomes. Conclusions: Undiagnosed maternal celiac disease is a risk factor for unfavorable fetal outcomes, but the risks are reduced when celiac disease has been diagnosed. celiac disease diagnosed prior to pregnancy does not constitute a great a risk as undiagnosed celiac disease.

I just read this abstract. Basically they found that celiac disease was prevalent (1:115) in healthy school aged children in Turkey. It would be great if someone would do a similar study in the US. I have a feeling the results would be similar. Does anyone know of similar research performed in the US?

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