Still Seeking Advice...

[The Mama]

Hi All! Not sure if you remember but I posted back in November WHAT ARE WE MISSING??? Believe it or not, just today we followed up with a dietitian (took that long to get an appointment). While the girl was very nice and defintely more informative that our first dietition experience, I still left with unasnwered questions. To recap: My daughter is 11 years old, 6th grader, we live in Maine, she also has tricuspid atresia (congenital heart defect-post surgical repairs and doing VERY well in that regard), started losing her hair almost a year ago and was "accidently" diagnosed with Celiac Disease last May (biopsy confirmation). Whew! She's been what we consider "gluten free" since June. Had hair regrowth and then started losing again in November which prompted us to retest. Her results were very close to being the same as when initially diagosed. While who we met with was very interested in her nutrition needs to be in good health--took her weight and height and determined her BMI and how many calories she should consume, grams of protein she should have, etc., she admitted she wasn't totally familar with the "gluten free lifestyle." So I left realizing that my girls should be intaking probably more calories, definitely more protein and absolutely more calcium. So we determined she should maybe use Ensure drinks as a snack (not meal), Viactive (calcium chews) to assist with calcium intake and increase her protien with meat and cheeses. This all was an eye opener as she's really been eating a lot of rice pata and white rice and potato products since being diagnosed with really don't offer much in nutrition (so that by itself could cause hair loss-poor nutrition compounded with Celiac Disease). Alex has her own cutting board, her own spice rack, her own collander, vinegar (rice) bottle, etc. She has a designated area in our kitchen which we use just for her food preparation. I think what is the most frustrating is that she has no symptoms other than the hair loss so if she's "glutenized," a red flag doesn't go up!! I know I'm going on and on here but I'm really at my wits end. My mother-in-law bought Alex a book, Gluten-Free Cooking for Dummies." Does anyone use this book? Is it considered reliable? Some of my other unanswered questions are....Is Modified Food Starch now considered acceptable or should we just be using it when it's idenfied as "corn" startch or tapioca, etc. What about cellucose? A major addittive in shredded cheese? I've been buying block cheese and shredding it since June....would love the convenience of buying shreeded if it was O.K.....ANY thoughts would be so appreciated. I realize I went on and on here....sorry!!

[happygirl]

Wheat is required by law to be listed for anything in an FDA labeled product. So, if you don't see modified food starch (wheat) then its not wheat based.

Here are two lists of companies that won't hide gluten - if you don't see wheat/rye/barley/oats clearly listed, its not in there, and you don't have to worry about it being hidden. Hope this helps.

Open Original Shared Link and Open Original Shared Link

Most standard shredded cheeses are gluten free.

[dilettantesteph]

Some celiacs have a lower tolerance for gluten than others. It takes a larger dose for some to produce antibodies and have a reaction than others. Most processed gluten free foods contain small amounts of gluten which are enough to cause a reaction in very sensitive celiacs. Average celiacs can eat them without difficulty. It looks like your daughter may be more sensitive than average. My son and I are highly symptomatic so we really know when we have eaten gluten. It is a lot harder in your case.

Before my son was diagnosed, he ate a ton including lots of ice cream and other sweets as well as healthier fare, and was so skinny the doctor kept coming down on me. Now he has cut out almost all sweets and is still a tiny bit fat. When his body was no longer damaged, he started digesting his food so much better that he had to eat much less, like maybe a fifth of what he was eating before. It took awhile for him to adjust. I suspect that your daughter's weight problems are more due to still getting gluten, and having damaged intestines, than due to not eating enough.

It is also important that she gets whole grains. I add whole grain flours to my bread mixes. You can grind flax seed and add it to pastas. Try to get brown rice pastas. Tinkyada is a reliably gluten free brand. Don't buy anything made in a facility that also processes wheat. Avoid restaurants. Make your whole house gluten free. My son and I couldn't stay healthy until we did that. Other family ,members can still have gluten at school or work.

Wheat is required by law to be put on a label, but lots of things contain tiny amounts of wheat that are not on the label. That doesn't apply to all celiacs, but it does apply to sensitive ones. The warning processed in a facility that also processes wheat is voluntary. Sometimes you have to look into it more carefully by calling the company or checking on their website. Even if they process it in a clean facility, their ingredients might not be totally uncontaminated.

You need to do as much scratch cooking as possible and avoid processed foods as much as possible.

It would be a good idea to list what she eats to see if anyone can point out any problem foods.

Best wishes to you. It is very hard to have a sick child.

[sandejosgirl]

I asked a celiac friend of mine for any advice as we are just starting out gluten-free. She said that even though she is the only celiac the whole house has finally gone gluten-free. The did the whole separate thing, counters, cutting boards, toaster, cleaning all the time. She said she just finally got sick of being sick! Even though she was so carefull, she is sensitive enough to be getting gluten-sick once a month. Now the whole house is gluten-free, if her kiddos or husband wants to eat gluten outside the home, fine. They've all been gluten-free for 3 months and she's feeling so good! They had been trying to do half n half for 5 years.

Also, if we hadn't all gone gluten-free we would not have known that it wasn't just my oldest D that has issues with gluten. We are in the process of trying to get a diagnosis for my other two kiddos and so added gluten back in and low and behold I FEEL ILL! I ate a Ritz, just a Ritz after 18 mos of no wheat, and a couple of weeks gluten-free and I got dizzy with terrible heart burn. The day after that I had a flour tortilla and spent the rest of the afternoon nauseated, heartburn, dizzy. After we get the kiddos done both my husband & I are going to get tested and I'm trying to convince my mom (colon cancer age 53) to get tested too! Has to come from somewhere , just didn't think it was ME!

Stephanie

[sandejosgirl]

I forgot to add, did you check your spices? As in, call the co. and ask? Sometimes they dust the belts with wheat so they don't stick.

Same with lots of products that don't contain wheat, but they'll use wheat or corn in the machines. Always, call!

[RiceGuy]

What concerns me, is if your daughter is having trouble healing, and if the antibodies are still elevated, it may not be a good idea for her to eat cheese. Dairy is often problematic for those with Celiac, even after considerable time and healing. It wouldn't surprise me if there is still something in her diet which is causing trouble.

I'm sure there are other options for her, to get the needed nutrients. For example, teff and amaranth are both high in protein, as is buckwheat (not related to wheat at all). Beans, nuts and seeds are good sources too. Just 1/4 cup of either teff or amaranth has as much protein as an egg, plus lots of fiber and other nutrients.

Also, make sure she gets a good healthy dose of sunlight, with no sunscreen, for the best vitamin D. During this cold weather, a vitamin D3 supplement is probably a good idea. Without vitamin D, calcium isn't effectively absorbed. Other nutrients which can help include magnesium, zinc, potassium, B-complex, essential fatty acids, omega-3s, and a bunch of other things I'm not thinking of ATM.

One thing I've read about animal proteins, is that they actually cause a loss of calcium - far more than proteins from vegetables. Here are some links for you to read through:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Here's a good site all about healthy eating:

Open Original Shared Link

You can look up the nutrient content of foods here:

Open Original Shared Link

[DanaDee]

Also, just a thought........My DD was 2 when diaged, she won't know any different and know what she is missing, unlike your daughter who ate gluten all her life. If she is in school all day, and doesn't "react bad" to gluten initially ( only internally), are you sure she is not snacking in school or getting sweets/treats from friends? She is just a kid. She must miss her old diet, just something to consider. I need to have my big girl tested now, 5th grade. I can't imagine what she would have to go through to switch diets. She is a gluten lover.

Also, try journaling all food, and look at the other foods she may be sensitive too, daity, eggs, soy, corn, etc.....She may have more than one intolerance.

Does she have a pediatric GI doc? This doc was the most helpful to us. Also, I went back to the basics, just basic unprocessed food while my daughter healed. Check make up, hair spray, everything. We found wheat lurking in other places in our house. Do you iron her clothes with starch? Check that too. ( we had been using hair spray with wheat starch......). Check vitamins, meds, everything, not just food. Lip gloss, etc.......

Hope she gets better.