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One In All In?


beebs

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beebs Enthusiast

I am in the crazy position at the moment of trying to keep my 4 year old gluten free as he has just had his endo and trying to gluten up my 17 month old because his endo is coming up on the 20th. Its pretty hard trying to make my little one eat cookies and granola bars while saying to my 4 year old. "You can't have that one but you can have this one" etc etc. Not that I am complaining (my little one just had a sweat test for cystic fibrosis where he had a 90% chance of having it so I was praying for celiac, but anyhow!)

Anyhow - the 4 year old has only been gluten free for one day - and I have to admit, I had no idea how full on it really is.

So this is my question - If you have one or two celiac children - did you just gluten free your whole kitchen - or do you still eat gluten stuff yourself and keep gluten food separate?

Any advice would be greatly appreciated.


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Wolicki Enthusiast

I was diagnosed first, then had my two boys tested. My 10 year old was positive. So, my 13 year old is outnumbered :( It's just too hard trying to keep track of crumbs and kids, so we all went gluten free. A friend of mine did the same because she kept getting CC'd from little kisses from her babies. Plus, your younger won't even know what he is missing!

Roda Rising Star

I went gluten free first in Oct. 2008. I had both boys tested after my diagnosis and they were negative. We kept a shared kitchen and still do but had to really crack down and be strict about it. My youngest one went gluten free last month since his blood work was positive. My oldest one still is not gluten free since I wanted him retested. His results came back negative, so for now he will not be gluten free. The only time my oldest son eats any gluten in the house is when his daddy is home or I'm feeling generous to fix him something. He also buys his lunch at school. For the most part I feed him gluten free at home. We all eat gluten free meals together for supper and he does eat gluten cereals occasionally for breakfast. If I have a sitter they are not allowed to bring it in the house and noone is allowed to eat any while the sitter is here. My kids help the sitter know what they can have.

beebs Enthusiast

I was thinking more for me and my hubby :lol: I know the kids won't miss it at all. But I have been tested and am neg and while I am happy with most gluten free food - I just hate the bread!

Thanks guys.

Mizzo Enthusiast

I was thinking more for me and my hubby :lol: I know the kids won't miss it at all. But I have been tested and am neg and while I am happy with most gluten free food - I just hate the bread!

Thanks guys.

Only 1 celiac in our household of 3. We are 95% gluten free. The only thing with gluten are Bread, crackers , some noodles and soups. All of these are kept completely separate from all other foods .

examples

1 drawer in frig( veggie bin) is designated for Gluten breads and such

1 shelf in cabinet (top shelf) for noodles, crackers, soup or snack foods

We have rules :

nothing with Gluten can go directly on oven racks

Separate sides of toaster for gluten-free or not

separate strainers for pasta and noodles

wipe down counters with paper towels often

All family meals are gluten free no matter who is here for dinner !!!!!

Any gluten foods eaten in front of dd is something she does not like . Only exceptions are if friends bring their own sandwich for lunch, and I provide snacks if we have company.

This works for us, but maybe not for others.

curlyq Newbie

My dd (7) has celiac, and my 2nd daughter (6) just tested positive as well. We do have gluten bread, pasta, oats, and crackers in the house. I do all that I can to avoid CC (seperate toasters, strainers, cupboards, etc...). My daughter is happy on the gluten-free diet and never really cares if we eat "normal" bread when she eats her "special" bread. We have decided that if she ever does care, then we will ALL go gluten-free at home. Most of our meals are naturally gluten-free. We also never eat things that she can't have in front of her UNLESS she has something equally wonderful.

Lunabell Apprentice

We are 99% gluten free in our house, even though it is only the 4 year old that has been diagnosed currently.

It came down to what was easier for me to handle. Because my 6 year old really likes her bread, we keep a loaf of gluten bread in the house for her sandwiches. Even making school lunches takes longer and more thought to keep Laura's from getting cross contaminated. The less gluten we have in the house, the fewer worries we have.


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Beth03456 Newbie

We only have our 4 yo who is gluten-free. My other child is 6 and she usually eats gluten-free but not always. However, we also feed the kids separate from the grown-ups most of the time, so it is easier to keep gluten-free and non-gluten-free things separate. If we all eat together, we usually make everything gluten free (tacos, roasts, chicken and veggies, salads, rice dishes). But we will make pasta and make extra for leftovers so we have stuff on hand for him, and then we will make regular pasta for the rest of us sometimes because its cheaper. Or if we are doing sandwiches we will make his first in his dedicated area of the kitchen, and then when his is made we will then make the rest of the sandwiches in the gluten area of the kitchen.

Our 4 yo has his own cabinet full of snacks, cereal, granola bars, chocolate, etc. and he knows its all for him. So my two kids know that they get granola bars from different stashes. They are good with it, and we stress washing hands before and after meals so there is less contamination.

MarsupialMama Apprentice

We all went gluten free for my one daughter (age 4) who showed signs, and ended up finding out that my second daughter's big belly (age 6) and my own 24 years of digestive/health problems disappeared in going gluten free (24 years of suffering, GONE!).

In having "gluten" and "non-gluten" food in the house, my daughter kept getting glutened. Containing crumbs is a nightmare. Older sister wanted to share her food. In some way, shape, or form, she would end up getting ahold of it accidently, and then would go "down" for about 3 weeks until her intestines healed up. Just wasnt worth it. Now I make and buy things that everyone can enjoy the best we can. The frustration with playing the "both worlds" game in our house just made me crazier than a bed-bug, and wasn't worth the nervous energy and devastation when accidents happened. We have just accepted it as our lot and decided to make/find the yummiest things possible. More expensive yes, worth the nerves? Definitely.

beebs Enthusiast

We all went gluten free for my one daughter (age 4) who showed signs, and ended up finding out that my second daughter's big belly (age 6) and my own 24 years of digestive/health problems disappeared in going gluten free (24 years of suffering, GONE!).

In having "gluten" and "non-gluten" food in the house, my daughter kept getting glutened. Containing crumbs is a nightmare. Older sister wanted to share her food. In some way, shape, or form, she would end up getting ahold of it accidently, and then would go "down" for about 3 weeks until her intestines healed up. Just wasnt worth it. Now I make and buy things that everyone can enjoy the best we can. The frustration with playing the "both worlds" game in our house just made me crazier than a bed-bug, and wasn't worth the nervous energy and devastation when accidents happened. We have just accepted it as our lot and decided to make/find the yummiest things possible. More expensive yes, worth the nerves? Definitely.

I can see why. Its only been 4 days and its a nightmare. My elsdest just cries cause he can't eat his old food meanwhile I'm trying to feed my younger son gluten because his biopsy is coming up. So difficult.

I can absolutely see why its one in all in. After my little ones endo we'll go completely gluten free!

Thanks for the replies!

domesticactivist Collaborator

My kids are 10 and 11 and we've just started this gluten-free process. I can imagine it's much trickier with them still so little. We have decided to make our entire house gluten-free, and for all of us to maintain the diet even out of the house. We're still in the process of getting rid of all of our old cooking utensils and appliances, and have a bit more deep cleaning to do as well.

However, we recently realized that since we want to test our daughter, we do have to keep her on gluten. Our solution has been to keep one loaf of bread in the freezer, and have her eat one sandwich a day with it, on a paper towel, at the counter where we normally put our dirty dishes. She has her own little jar of peanut-butter and honey that no one else touches, just for these sandwiches.

My kids' dad (where they live half of each week) does not plan to go gluten-free himself and has not yet taken steps to decontaminate everything. Our son's anxiety has been increasing, and his tummy is not feeling like it used to when he had gluten all the time, but it's not feeling right. He did stop giving him foods that obviously have gluten in them, but he's using a lot of "gluten-free" products. I think ds is getting cross-contaminated there. Well, I know he is. Our kids are starting to understand what it really means to be gluten-free, and they made a list of the things that were problems - dirty microwave, using the same toaster oven for gluten food and ds's gluten-free food, using same utensils in jars of things, etc. I've explained this stuff to their dad a couple different ways, but he didn't get it, yet. I also gave him a book which he barely started reading. I think in time he will realize what needs to happen.

domesticactivist Collaborator

Hey... Good news -

Last night we talked with the kids' dad and he had read the book I gave him, decided to make his whole house gluten-free, ordered another book, and lent the one I gave him to my mom. He also decided to try eating meat and go more to whole foods, and wants to start our daughter on the gluten-free diet as soon as the tests are done, regardless of whether they indicate celiac, to see what happens. I'm really glad he's getting it.

beebs Enthusiast

Hey... Good news -

Last night we talked with the kids' dad and he had read the book I gave him, decided to make his whole house gluten-free, ordered another book, and lent the one I gave him to my mom. He also decided to try eating meat and go more to whole foods, and wants to start our daughter on the gluten-free diet as soon as the tests are done, regardless of whether they indicate celiac, to see what happens. I'm really glad he's getting it.

That is so good mate! I am so glad to hear it. Its hard to make others see just how dangerous it can be. So its great he has changed his mind!

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    • 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. 
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      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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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