Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Diet When First Going gluten-free For A Very Sensitive To Cc Child
0

7 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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. http://link.springer.com/article/10.1007%2Fs11130-012-0274-4

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,374
    • Total Posts
      920,569
  • Topics

  • Posts

    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
    • SIBO, microscopic colitis, probably celiac here (celiac's a self diagnosis, was gluten-free before getting tested). Now my doctor is suspecting hashimoto's due to low heart rate, so getting tested for that probably tomorrow. Anyway, I feel your pain... Low FODMAPs on top of gluten-free is tough. One thing that has helped me a lot is betaine HCl with meals. I can actually eat some onions, garlic, and fruit again with much less trouble. Make sure you get a safely gluten-free brand. Country Life is certified gfco, so is tested to less than 5ppm and is what I take. Good luck!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,450
    • Most Online
      1,763

    Newest Member
    Chellygirl
    Joined