Diet When First Going gluten-free For A Very Sensitive To Cc Child

[Mom2-2girls]

My daughter has been gluten-free after being diagnosed with Celiac in early October. Not sure if it matters but her Marsh score was 3B. Anyways after a HORRIBLE first month with really bad withdrawal symptoms we have seen big improvements. However it seems like she is really sensitive to CC. Our whole home is not gluten-free and we got rid of a lot of things (like the toaster etc). She goes to my mom's once a week for dinner and my mom is super vigilant. At daycare (2 times a week) she only has rice and her own snacks.

She keeps getting tummy aches and having gluten-tantrums. It is so obvious when she is glutened. The thing is I feel that we are SO careful yet this still happens at least once a week.

Does anyone have suggestions? Is there a super safe diet we should be following for a while?

Any input would be much appreciated.

[dilettantesteph]

Since you are just starting out, it might just take some time. It can also take some time to learn all the ins and outs of the diet. In a shared household there are precautions that you can take with separate counters, toasters, certain dishes like colanders, etc. How careful are other family members about gluten crumbs? We tried everything for a year and then we decided that we had to have a gluten free household. It will depend on your daughter's level of sensitivity. It may be to soon to know yet. Healing can take awhile too.

My son and I are both in the super sensitive category. We also had to go with mainly whole foods diet. It is easier to avoid possible cc that way. Good luck to you. I remember those gluten tantrums!

[Mom2-2girls]

Since you are just starting out, it might just take some time. It can also take some time to learn all the ins and outs of the diet. In a shared household there are precautions that you can take with separate counters, toasters, certain dishes like colanders, etc. How careful are other family members about gluten crumbs? We tried everything for a year and then we decided that we had to have a gluten free household. It will depend on your daughter's level of sensitivity. It may be to soon to know yet. Healing can take awhile too.

My son and I are both in the super sensitive category. We also had to go with mainly whole foods diet. It is easier to avoid possible cc that way. Good luck to you. I remember those gluten tantrums!

Thanks for the reply. Our whole house is gluten-free. My mom's is not nor is the daycare providers since no one has celiac in those families. I know my mom is super vigilant and the daycare provider is careful too, but maybe my daughter is just that sensitive...

I think we will put her on a whole foods diet (we already mostly eat whole foods but could step it up) and not let her eat anything from other peoples homes for a while.

[GFinDC]

Packing her lunch for visits to daycare or mom's seems like a good idea. At least for a while to see if it makes a difference. I think it is good to review everything she is eating once in a while too. Ingredients on any processed foods, vitamins, drinks etc can change, so it is not a bad idea to review them every once in awhile. Actually every time they are bought is best. Whole foods are definitely a good idea while she is early in the healing process, say the first 6 months or so. I saw you were eliminating sugary cereals. How about dairy? Have you tried giving her almond milk or rice milk instead of cow milk? I don't think soy milk is s good alternative myself. But rice, almond, coconut, and hemp milks are ok.

[GretaJane]

There is gluten-free, and there is celiac gluten-free. Gluten-free is not enough for my celiac son. CC is everywhere. Things labeled gluten-free are often mostly gluten-free, there are no regulations yet on what gluten-free means. Recently I ordered a bottle of "Gluten-Free" teriyaki sauce, and once it arrived I looked at the whole label and on one side it indeed say gluten free, while on the back under allergen warnings it said contains WHEAT! Also wheat was listed in the ingredients.

Some celiacs can't tolerate even gluten-free oats. Some can't tolerate corn, because the corn gluten is so much like the wheat gluten. Open Original Shared Link

Some people also have sensitivities to other foods that prevent healing.

It takes a long time to learn all the hidden sources of gluten and all the cross contamination issues (drying hands on contaminated dish towels; using utensils with porous surfaces that have previously been used for gluten; baking with flour can leave it everywhere in the air and on surfaces that kids touch and then put fingers into mouth or eat without washing with gluten-free soap and water.)

Good luck and keep reading everything!

I have been doing this for a few years and still make mistakes.

[Takala]

The best thing to do here is that you list out what the kid eats ever day at every meal, breakfast, lunch, dinners, snacks, and we then go through it and see where the holes are.

[Cara in Boston]

My son only eats food that either I prepare (in our 99% gluten free kitchen) or that is pre-packaged and labeled gluten free. He doesn't even eat any foods that are "prepared in a facility that processes wheat". At first it was a pain, now it is just second nature. I invested in some fantastic food storage containers and bento boxes and he just takes his food with him. School, playdates, field trips, swim meets, etc. We only eat out if the place is a special, gluten free establishment.

At home, the two "gluten eaters" have a specific area where they make sandwiches (with regular bread) on trays that catch all the crumbs. If they eat gluten cereal, they use special RED bowls so I know not to wash them with our regular gluten-free kitchen sponge. Other than that, there is no gluten in our house. I don't cook with it at all.

Our extended family is always trying to include us by making special recipes. They try hard and mean well. It took over a year for them to finally understand that he simply cannot eat things that are prepared in a regular kitchen. It is just easier for me to pack it. Better safe than sorry.

Cara