• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • 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?  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

So Frustrated... Daughter Keeps Getting Glutened.

Rate this topic

Recommended Posts

My daughter is 5 and has been diagnosed with Celiac recently. She has been gluten-free for 2.5 months. The first month was so horrible. She was having meltdowns everyday and her behaviour was just out of control. She likes the gluten-free diet and had no problems cutting it out.

Since November she has been getting better and better and her moods have really improved. Before she was diagnosed she had a lot of weird meltdowns and behaviour that didn't make sense. Now whenever she gets agitated she will almost always complain of a stomachache, so we have to assume she has been glutened.

Our home is 100% gluten-free. She goes to a home daycare twice a week and the woman is really careful and only feeds her rice with basil, raisins etc (no "seasoning" etc). I supply snacks and her own peanut butter etc. I think she might be getting glutened at daycare.

As well my mom watches her one night a week and she seems to get glutened everytime she goes there. My mom is very careful and very well read but her home is not gluten-free.

I just feel so frustrated. We are so careful... but I am starting to wonder if my daughter is extra sensitive. She once had a smoothie from Tim Hortons and got a really bad stomachache right after. Could a crumb of gotten in and set her off? Her blood test results were very high apparently and her Marsh score was a 3B. Just sharing incase this gives some background.

Has anyone been through something similar? Any suggestions? Do I just stick with making her extremely safe foods for a month... 2 months?

On top of all this my 2 year old has been having a rectal prolapse and is on laxatives for months until her rectum can heal. She is also getting the celiac blood test in a couple weeks.

Just feeling really overwhelmed.

Thanks for the support.

Share this post

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

I've been feeling the same way off and on, but I think now that my daughter is just having a hard time digesting everything until the damage in her gut heals up. I have found that for us, gluten free is not enough. She needs a very low carb diet that is high in protein with foods that are easy to digest. She is doing much better now that we have added daily kefir and removed sugary breakfast cereals. At least she's been doing better for the last several days. I'm hoping it sticks!

I think that we are going to start aloe juice - a small amount daily - to help with the healing. I'm still researching that.

Hang in there and take it one meal at a time!

Share this post

Link to post
Share on other sites

You might want to skip the restaurant meals until things calm down. It is just one more variable when things are already hard to figure out. It can take some time to get used to everything. Be patient. It is easy to get overwhelmed. It hard to feel responsible when your child gets ill. You can only do your best. Forgive yourself your mistakes. Different celiacs vary when it comes to onset of symptoms after eating gluten. With me I notice the next day. With my son, it takes two days. You need to figure that out to help determine the source. Keep a journal where you write down everything, food eaten, source, health, where she ate. Whole foods help to make things more simple.

Good luck.

Share this post

Link to post
Share on other sites

Might she be playing with Play Doh or do they have it at the daycare? Could you have any shampoo or toothpaste with gluten? Pet food?

Share this post

Link to post
Share on other sites

Thanks so much for the replies. We mostly eat a whole foods diet and don't eat out at all (except for that one smoothie). I feel like we are so careful. I think maybe we need to go to basically 100% whole foods though. I was reading about people having to replace pots and pans etc. I wonder if she could be sensitive to things cooked at the home daycare and at my moms. I really didn't think it would be this hard. I had a student with celiac and she was not like this. Once she accidentally ate non-gluten pizza and said she just got a bit of a tummy ache. I suppose at least this way we know she is getting hidden gluten instead of being unaware.

Share this post

Link to post
Share on other sites
Ads by Google:

We have a family of super sensitive mom and three kids. We are much, much more sensitive to ambient gluten exposure than many/most celiacs. We have gluten reactions when a "celiac" should not (we have wheat allergy in addition to celiac). We had to scale back to whole, unprocessed foods prepared in our home (100% gluten free as much as humanly possible). I would pack all of her food when she is getting care by others. We have to make sure that no gluten flour is used in spaces that we occupy. All playdohs used in their spaces must be gluten free. When in a shared space hand washing and the use of packed from home utensils also help prevent inadvertent cross contamination.

I can give more details if you are interested, but I really wanted you to know that you are not alone. We had to implement a rule for my parents home that they could not use flour starting 48 hours prior to our arrival. Check all hand soaps as well, as hand washing is so important for kids in shared spaces. We provide dedicated gluten free pots/pans/cutting boards/ utensils for shared places where we feel food handling protocols will work. But our default is to simply pack all food from our safe home when possible.

Edited to fix the auto corrected play doh that said dog which reminds me that pets in these spaces can also be problematic because many pets foods are gluten based.

Share this post

Link to post
Share on other sites
I was reading about people having to replace pots and pans etc. I wonder if she could be sensitive to things cooked at the home daycare and at my moms.

Yup ! Porous cooking surfaces used for gluten need to be kept away or replaced for gluten free cooking. This includes, but is not limited to, teflon,cast iron, plastic tupperware type storage containers, plastic measuring cups and spoons, wooden/plastic cutting boards, colanders, rubber spatulas, wooden spoons, baking pans with cooked on residue that isn't scrubbing out of the seams, grimy potholders that grab bready things out of the oven, the electric mixer, the rolling pin, and the toaster needs to be gluten free clean and dedicated. Stored food in the refrigerator, which are dipped into and then spread on bread, such as margarine or peanut butter or jelly,can also be a gluten vector, so the gluten free person needs their own, in a shared household. I would be wondering about any plastic dishware at either the daycare or the relative's, also.

Paper towels are your best friend for laying down quickly on an iffy surface. :)

For the more sensitive, it is a good idea to avoid shampoos, soaps, and conditioners with wheat and oats, (because the oats can be cross contaminated with wheat, or she could be reactive to oats, too, as are some). Pet foods and cat litters are another place to look for hidden wheat products. I have a dog who is allergic to wheat, and figuring out that the cat was cross contaminating him by drinking out of his water dish, instead of her own was a real trip. Cats also lick themselves, and then spread this all-over-detritus all over your bedsheets, for example, or they try to groom you. Anybody trying to avoid gluten, who has a really large dog who drools this much would be running screaming from the room if they saw such a creature chowing down on gluten dog food then standing close by, with his head clearing their desk, but his allergy, and how he got to be at the dog pound the day I checked the listings, is one of those mysterious coincidences of life that works out. The horse who's allergic to the rye & bermuda grass family and soy, who could get cross contaminated by any of the other pets or horses, before we had the dog who made me realize it was the shared water dish was also a great teacher on this subject. It seems that the rule is that if wheat is anywhere on the property, it will somehow make its way towards the creature who is not supposed to eat it.

And it can be really awkward when relatives mean well, but they gluten you anyway.

Share this post

Link to post
Share on other sites

Before we jump to super sensitive perhaps we should look at the common sense, easier to fix things? Like eating somewhere besides home? I would send her food with her or not send her at all for a few months until her health improves.

She is only a couple of months gluten free and , if she is getting gluten at these baby sitting situations, she really hasn't been gluten-free. It can take a few months gluten-free to heal. If she has a lot of damage, many foods could be hard to digest or irritating.

At home, are you using the same PB or butter tub that was used with gluten bread? A fresh colander for gluten-free pasta as its very hard to get gluten pasta out of every little hole. Are the babysitters doing this, too? Does she get play dough or toys with dried play dough on them to play with?

It can take 2 months to get into new habits and figure out the gluten free thing.

She is old enough to eat another kid's cookie but maybe not old enough to understand why she can't have what the other kids have. And when you are five or 45, it can be hard to happily eat your orange while the other kids have chocolate chip cookies

Share this post

Link to post
Share on other sites

My 5 year old son is very sensitive to gluten. And it has taken me years to learn all the hidden sources of gluten. And I am still learning new stuff all the time. Never stop reading - research, experiences of others, and labels (they change frequently). Study the lists of unsafe foods. Know that your daughter may not be able to tolerate even gluten free oats and possibly corn! http://link.springer.com/article/10.1007%2Fs11130-012-0274-4 My son doesn't do well with gluten-free oats. Cross contamination is a crazy big deal. Lots of grains can be cross contaminated at the farm. Is the rice sourced from a gluten free origin? Is it being prepared on gluten free surfaces and very clean pots? Stirred or served with a clean metal spoon, or possibly a wooden or plastic spoon that has embedded gluten? Food needs to be served on glass or metal, or dedicated plastic. Is flour being used to cook with in the kitchen at day care? It can remain suspended in the air for hours and could settle anywhere. Make sure your child understands the importance of washing hands -- with gluten-free soap -- before eating or putting fingers in the mouth. You need to be vigilant from FARM TO PLATE. It is so frustrating, I agree. Why can't we just stop somewhere and grab our kid a quick bite to eat? Smoothies can have all sorts of additives that could be derived from wheat or barley or rye. Natural flavors can easily contain barley extract. Get used to the idea of calling companies to find out what is in their "natural flavors." Good luck with the never ending battle.

We just found out a couple of months ago that our son is also sensitive to other foods that seem to have kept his intestines from healing. He is anemic and deficient in Vitamin D and was losing weight. He has stopped losing weight since adding liquid iron supplements and eliminating the other foods he is sensitive to (eggs, sugar cane, soy, lima and kidney beans, pecans, and cranberries). Time to go bake some safe foods for him.

Hugs, and hang in there. Always feel so happy when my kid is comfortable and not in pain or itchy or miserable.


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


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Hi All,  Recently (Nov 2017) I was diagnosed with NCGI by my consultant at hospital, this diagnosis has been after years of testing, colonoscopies, endoscopies and a 2 stone weight loss - it took the weight loss for me to finally be taken seriously by dr's. (I was tested for celiac around a year ago, all clear). I'm looking for advice to help me cope with this diagnosis, albeit I am thrilled that I potentially do not have anything life threatening (still undergoing tests, hosp visits etc.) but on the whole, I'm feeling hopeful that gluten may be the root cause to all my ailments and symptoms.  From diagnosis, I have cut out gluten completely, and apart from the odd slip up or cross contamination incident I have noticed a drastic improvement in my life quality and my time spent inside my bathroom walls has dramatically reduced. (TMI?)  The problem I am currently having is that I feel completely isolated from everyone in my life, I feel that me having to follow this strict diet is putting a burden on loved ones, especially when it comes to travel & eating out. (Was over in Berlin over the weekend, spent a good 5 hours over the weekend crying at being a burden to my BF restricting where we can eat, and also the fact that the majority of places we tried to dine, bar one or two, did not cater to the diet).  I thought I was coping with the diagnosis well, however the crying spell and fed up feeling with it proved I'm not. Does anyone have any good tips they followed and can recommend when they were newly diagnosed?    Xxx
    • Sorghum flour gives me massive cramps and diarrhea within 5 hours. I avoid it like the plague now.  FYI: Krusteaz gluten-free cornbread also has it as an ingredient, just found out the hard way.
    • Welcome!   Did you get skin biopsies?  Some celiacs are seronegative.  They might not even have intestinal damage.  Instead most of  the antibodies (and damage)  are in the skin.  I do not have DH, but suggest you scroll though the DK section and get tips.  Specifically on how to coach a derm properly on how to biopsy for DH (or find a celiac-savvy derm).   It is NOT the same for other rashes from what I have read.  I do not think a person with a gluten sensitivity can have DH because DH is celiac disease.  It just presents differently.   https://www.allergicliving.com/2017/07/11/celiac-thats-skin-deep-the-mysterious-rash-sparked-by-gluten/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ I hope you find relief!  
    • Adding the Frito Lay list that was updated a week or so ago
    • Thanks - this was my question, also very confused by conflicting advice. Think I may reschedule blood test, at present in 10 days, as although not gluten free, have eaten very little; two casserole mixes in 4 weeks, Trying to lose weight. Will have an endoscopy for Barretts oesophagus in April so makes sense to get the timing right. Think its unlikely to be positive but in a way hope it is! Ill for about a year now and the only bad blood result is folic acid, very deficient in spite of a very healthy diet, duodenum was inflamed at last endoscopy 3 years ago. I see two doctors as both are part time. First blood test was in Feb , second in Nov by which folate level had improved but still low. Both doctors have now mentioned celiac disease. Take Levothyroxine 150 mcg and TSH normal. Symptoms are more like anemia but no megoblastic anemia or iron deficient showed up. ECG normal Doc is also doing a thyroid panel, hopefully with T3 but haven't been thyroid tired; definitely more like anemia Was fine on Levothyroxine for 4 years. Apologies for rambling!
  • Upcoming Events