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Saying Hello And A Question


Notso

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Notso Newbie

I'm new to the board and wanted to say hi. My daughter was diagnosed after her one year checkup. She had text book digestive symptoms and failure to thrive. We are four months into our journey, and I am so thankful for the diagnosis. She is a different child now: happy and thriving!

My question is is your whole house gluten free? Harper just started walking so cross contamination from crawling over crumbs in the kitchen is les of a factor. I have a four year old, and while she is handling it well, I know she misses goldfish, etc.


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melikamaui Explorer

Our whole house went gluten free when my 6 year old was diagnosed a year ago. My 9 year old doesn't mind eating gluten-free at all because he knows it helps his brother. My thought was that the rest of the world can be an unsafe place for my 6 year old and I wanted our home to be a safe haven for him. We don't allow gluten into the house AT ALL. All visiting friends know this and for anyone who pops by there is a sign on the door that reads...

"Due to health concerns for our child with celiac disease we ask that you please

- Wash your hands upon entering

- Remove your shoes

- And do not bring any foods containing gluten into the house

Thank you for helping us to keep him healthy!"

This is just what works for our family, feel free to take what you like and leave the rest!

Melika

nmlove Contributor

With it being the younger child it might be more difficult to have gluten in the house. My two older children have celiac (6 and 4) but we still have gluten in the house. I do make gluten-free lunches and dinners for all (though sometimes there is gluten like with tacos or spaghetti). In general, I have a small gluten area for preparing those foods, wash all gluten-free stuff first and keep the kitchen clean and the floors swept. The biggest thing is I have the boys wash their hands well before eating (as we should anyway!). They seem to be doing ok and have only had a problem with gluten in their diet once and that was from them consuming something on a near daily basis that said it was gluten free but indeed was not (Trader Joe's rice milk). Good luck with everything!

Mummyto3 Contributor

This is something I've been thinking about constantly. My 9yr old was diagnosed last month, just waiting for biopsy. My hubby and I were tested via blood test, which came back 'normal'. We haven't tested our younger two. At the moment, I'm thinking we'll probably be mostly gluten free and will put on bright stickers for my daughter for things she can have. We'll also obviously be careful for cross contamination.

Notso Newbie

Thanks so much for sharing what y'all are doing. We went totally gluten free at first, and are still gluten free for my older daughter since she is a messy eater, and I have become terrified of crumbs. My husband and I were only eating gluten in restaurants, and we were bringing food for Harper that was gluten free and cut up so we wouldn't cross contaminate it by touching it.

However, my husband and I are getting tested right now and I need to eat gluten to be tested. I am a stay at home mom, so to get as much as I need I'll have to have some at home. We've been eating gluten when she is sleeping, and only eating bought, non crumb foods (ie. Pasta and stuff that I am not cooking in our gluten-free pots). I've been really worried about it, though. It's so hard with a non verbal child, and i worry all the time about making her sick.

shayre Enthusiast

That's a hard place to be in. Our house went gluten -free, because mixed just wasn't working. I did notice a big difference in how I felt when we started being very careful with the gluten, but I did notice more difference after going gluten-free for all. Maybe some people could manage it, but we couldn't. It will also depend on the sensitivity level of your child which I am assuming that you don't quite know yet. My opinion is that you should get your testing done, so you know...then consider going gluten free for the whole house if you want.

mylittlepeanut Newbie

I am curious about this as well, I see that folks are using separate pots? I had know idea how intense this is... we just had my daughter tested and came back positive last week, she is 22 months old weighs 19 lbs and is 31" tall. We are scheduled to see a gastro. doc soon to get better help. Our pediatrician seemed a bit clueless. Any help would be appreciated!


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    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
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