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How To Explain Celiac To 4yo


Nantzie

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Nantzie Collaborator

I was just wondering how everybody explained celiac to their child. My daughter just turned four. She only has mild to moderate symptoms; D that doesn't seem to hurt/worry/bother her, mild tummy aches and appetite issues, dark circles under her eyes and some behavior issues that may or may not be related to celiac. In other words, things that are more worrisome for me than her.

I know that she's old enough to understand quite a bit. I am ordering a couple of books for her from Amazon - Eating Gluten-Free with Emily and The gluten-free Kid. They are geared toward kids who are a little older, but I think they'll work. I think they'll also be good in helping me figure out how to explain this to her school.

I was just wondering how everyone else approached this with their kids.

Nancy


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Daxin Explorer

I think you're on the right track with the books! It can be tricky with kids, explaining things that seem over their head.

I find just being striaght up sometimes helps as well. Kids are sometimes a lot smarter than we give them credit for. :lol: Try just being as direct as possible...she may surprise you. :huh:

Guest nini

I got Danna Korn's book "Kids with Celiac disease" and used her recomendations

chewymom Rookie

My daughter will be four next month and has symptoms just like what you describe! She occasionally complains of tummy aches, has non-painful diarrhea, etc. We tested her using Enterolab, and it came back that she is gluten sesitive/intolerant.

I haven't put her on a gluten-free diet yet, mainly because her symptoms are so mild and bother me more than her! I would love your feedback once you've done this for a bit. I'm dreading pulling some of her favorite foods, not to mention trying to be in control of what others feed her!! :blink:

jayhawkmom Enthusiast

My daughter just turned 5. We bought her Gluten Free with Emily and No More Cupcakes and Tummy Aches.

I've done a lot of explaining, discussing, and doing everything possible to be positive about it. Instead of saying, "NO you can't have that" -- I try to remember to say things like, "Sure, that is yummy - but how about we have this instead, it doesn't have gluten in it."

I keep positive, but continually reinforce the "no gluten."

My daughter's blood tests came back as inconclusive, but we went on to have the endoscopy because of the constant tummy aches and "D." Turns out that she had ulcers in her small intestines, and we never would have known that without the endoscopy. I immediately pulled all gluten from her diet, and she's a million times better now. She's not completely better, but she's growing again...and that's awesome!!

On June 13th - she weighed 30 lbs and was 39" tall. (her 3 year old friend is taller and heavier) And, when she went for a follow up visit the other day, she was 33 lbs and 40.5" tall!!!

Nic Collaborator

I was actually very straight foward with my son. He was diagnosed at 4 years as well. He did have some pretty bad symptoms (constipation mainly). I explained to him that his body is confused and thinks that gluten (I explained that gluten is all of the cookies,cakes, cereals, pasta, and breads that he eats) is poison and that is why he is so sick. He really did understand. Now at 5 I have no problem with him understanding that he cannot eat or touch any food without me or someone designated as a food giver for him says it is ok.

Nicole

TCA Contributor

I told my son that some foods are what makes his tummy hurt and he needs to ask me before he eats something. He knows that here at home everything is safe, but when we're away he needs to ask. He's 3.5 and it works well for us!


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Luvs to Scrap Apprentice

My son will be 4 in Sept. When he got diagnosed in June we told him that gluten (or wheat, oats, barley and rye) made him sick just like they make Daddy sick. He now will only get to eat foods that are safe for him and Daddy. We only offer him safe things at home obviously but we have been working on him needing to ask before eating something when we are away. I was so proud of him last Sunday when he told the children's worker at my parents church that he couldn't eat the animal cookies. He tells people he can't eat wheat and after reading Danna Korn's book I have been trying to teach him the wheat, oats, barley and rye thing. I think he understands pretty well for his age. It really helped here that he had a parent he could be like. (You are gluten free too aren't you, Nancy?) We totally played that up and Luke loves eating Daddy's special stuff. :) Kendra

Nantzie Collaborator

Thanks everybody for all the great advice. I ordered Kids with Celiac Disease, as well as the other two books. I'll have to play up the "Just Like Mommy" thing. I never mentioned my gluten intolerance to her before because she has always been such a picky eater that I didn't want her to tell me she was brocolli intolerant or something. :lol: I found out from some other parents though that their celiac kids ended up not being picky anymore after going gluten-free. Fingers crossed on that one..

I did talk to my daughter's preschool today. I decided to just go ahead and make gluten-free versions of whatever they're having for lunch/snacks. That way I won't have to worry so much, and they won't have to deal with it either. I'm going to put together some information for them sometime in the next couple weeks and have a meeting with the director and her teachers.

For the record, all they did was write it all down on her information card. They didn't say I needed to bring a doctor's note. They just said they wanted as much information on it as I could provide them with.

Wonder if they'll provide me with my own filing cabinet? <_<:lol:

Nancy

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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