• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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

Rate this topic

7 posts in this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
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!

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.

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.

  • Upvote 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.

Share this post


Link to post
Share on other sites
Ads by Google:


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.

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

Share this post


Link to post
Share on other sites


Ads by Google:


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
      108,132
    • Total Posts
      939,838
  • Member Statistics

    • Total Members
      66,112
    • Most Online
      3,093

    Newest Member
    OliviaFW
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yeah I've wondered a bit if I'm not getting all the other B vitamins from food alone and if they'd do me well. Magnesium content in the keto vitals isn't a lot. I try to get some more through food but I doubt it's optimal. I might have to look into that stuff. Interesting about the meats. Unfortunately I need the fat, especially if I'm gonna continue trying this keto thing for awhile, give it a chance to work. I did know about the difference in omega content, but since starting this diet I've been supplementing with fish oil to offset the omega 6's. Hope you'll be able to eat meat again soon, even if in small amounts. So much this. Every day I want to get up and do anything, and can't and it sucks. I want to climb the walls, get away from myself... Ugh, this takes too long, and I'm too impatient. Yeah, looks like I have to cook everything. I figured I'd at least be able to eat raw baby spinach. I need SOMETHING I can just grab and eat, but it gives me the same slightly itchy mouth that fruit gives me. I've been allergic to fruit forever... Don't have this problem with my steamed broccoli and cauliflower. I already cook everything else I eat. (and it's all organic, real food) So annoying to have to spend half my day cooking, not that I have anything else I can do. But what do I do when (or if) I get healthy again and am like, out somewhere? Damn I miss potato chips. I'll tweak a few things here and there and keep trying.
    • I see banana pudding in your future! ENJOY! I'm glad you came back to report what happened with the cookies.
    • Hey Josh! Corn is hard to digest even when one has a perfect gut. Imagine a damaged gut trying to cope with corn. Ditch the corn for a while. As far as soy goes, many of us, especially in the first 6 months to a year, have problems with soy. Some have problems with soy for years & years & others are able to have soy after their guts heal up. Some never have problems with soy at all. We are all individuals & react differently to different things.  I've never heard anyone having problems with sunflower or safflower oil in the 6 years I've been on this site. As far as lactose goes, again, I'm going to say we are all individuals...... I never had a problem with lactose, some do, some cut it out for a period of time & then later find it presents no problem for them and some can not tolerate it at all and some don't have any problem. A food log is a great tool for you to use to figure out what might be a problem.
    • Ok just to set the record straight, I tried one more cookie and then another and now half the package is gone so clearly these cookies are not to blame for the reaction I had that day. Still don't know what got me but it wasn't these!
    • Welcome, Josh! You have two choices: 1) go back on gluten and get tested.  This will help confirm if you have celiac disease or not.  Some 10% of celiacs are seronegative.  You should confirm if you had the complete celiac panel.  I personally am only positive on the DGP IgA, even on follow-up Testing.  Okay, if you have NCGI, the treatment is the same.  But with a celiac disease diagnosis, that puts you at risk for other autoimmune disorders or cancer (though rare).    You could have both IBD (Crohn’s or Ulcerative Colitis) and celiac disease or maybe Hashimoto’s Thyroiditis.  Knowing this, your doctors can be on the alert for future problems.  It can also help you adhere to a LIFELONG gluten free diet because you will have NO DOUBT.  The endoscopy also provides an initial baseline.  2) stay gluten free for life.  Learn all that you can about cross contamination, avoid eating out (it is like Russian Roulette).  Eat fewer processed foods.  Learn to read labels.  Keep a food and symptom diary to identify other food intolerances.  Read our Newbie 101 advice pinned at the top of the “Coping”section of the forum.  Healing can take months to YEARS.   I have a formal diagnosis (four years ago) and my only known symptom was anemia.  No GI issues.   My hubby went gluten-free 16 years ago per the poor advice of two medical doctors.  We both know odds are that he has celiac disease, but we can not afford for him to be sick for a three month gluten challenge.    He will tell you that I get way more support from medical, family and friends.  We were easily able to get our daughter tested because of my diagnosis.  Easy for me to get a bone scan confirming osteoporosis, etc.   Only you can decide what is best in your case.  I wish you well.  
  • Upcoming Events