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How Far Do I Need To Go?

amandasMom

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amandasMom Newbie
amandasMom
Posted

Hello all,

My Beautiful 9yr old daughter was diagnosed this past February and has been gluten free since 2/13. (Or so I thought.) For two glorious weeks things were going so well. We tried all kinds of gluten-free foods. All of the foods are prepared here, she brings her lunch and snacks to school. She started having issues again 2 weeks into it and it is driving me crazy. I have thrown every gluten containing food out of my house and I have triple washed every surface. Yet it continues.....The doc says I should toss my old pots and pans as they are non-stick (an issue in it's own right, I know) and they may be harboring gluten from our past. Do I do the plates and cups too? only the plastic ones that the kids eat off of? Do I gut my kitchen and build new? (I am tempted at this point...) Any sage advice from the pros out there?

Tracey

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mommida Enthusiast
mommida
Posted

Please check all personal hygeine products. It does really matter how much you scrub everything if you turn around and put a gluten hand lotion on. llipgloss? Cook on fresh aluminun foil till some of that gluten works it way out of the pans.

Go back over the list of forbidden ingredients. Keep a food journal. You are new to the diet and it takes time to heal all that damage. She may need to be casein free at this stage of healing. Watch for hidden gluten. i.e. the rice dream non dairy drink that states in a different spot on the label - not in the ingredint list "processed with barley enzymes"

Check out the controversial list of foods, keep note of them and only introduce them slowly- one at a time. From what we have learned most of the controversial ingredients don't have gluten, but Celiacs with damaged guts do not handle them well. ( i.e. annatto, distilled vinegar)

Laura

Guest nini
Guest nini
Posted

it is a good idea to replace non stick pans IF they are old and really scratched up. I switched to stainless steel. I wouldn't worry about plates or silverware... cutting boards are a tricky one. You may want to buy a new plastic cutting board and designate it just for her. A new toaster that is specifically gluten-free is important for her gluten-free breads. Look at her vitamins (Flintstones are not gluten-free), Shampoos, Conditioners

I agree too that she may need to avoid dairy/lactose for a while until she is healed. On average it takes 6 months to 2 years before you really start to notice healing...

Ursa Major Collaborator
Ursa Major
Posted

Make sure the soap and shampoo she uses doesn't have wheat germ (or barley) in it, same goes for every other hair and beauty product.

A new toaster is a must, as it is simply impossible to clean a toaster properly. You really want to get stainless steel pots and pans. Your dishes are fine. Wooden cutting boards are a problem, so are strainers. If you have drained gluteny noodles in your strainer, don't use it for non-gluten ones. You really can't get them clean enough. If you use a toaster oven, use aluminum foil for everything your daughter will eat that is prepared in it. Don't kiss her on the lips (I don't kiss kids on the lips, but many people do) after eating something that contains gluten. I agree with the rice dream (milk substitute), it contains gluten. Check everything she eats for hidden ingredients.

I agree with the dairy. Most people with Celiac disease can't handle it initially, and often it will cause pretty much the same symptoms as gluten. Some people can reintroduce dairy after about a year, many can't ever have it again.

Some people can't tolerate gluten free foods from Bob's Red Mill (in case you use those). His facility produces many products with gluten as well, and I guess cross contamination is a possibility. The same goes for Amy's frozen dinners. Most celiacs are fine with those, and some are not.

Okay, that's all I can think of for now, I am sure others will think of the rest!

ravenwoodglass Mentor
ravenwoodglass
Posted
Hello all,

My Beautiful 9yr old daughter was diagnosed this past February and has been gluten free since 2/13. (Or so I thought.) For two glorious weeks things were going so well. We tried all kinds of gluten-free foods. All of the foods are prepared here, she brings her lunch and snacks to school. She started having issues again 2 weeks into it and it is driving me crazy. I have thrown every gluten containing food out of my house and I have triple washed every surface. Yet it continues.....The doc says I should toss my old pots and pans as they are non-stick (an issue in it's own right, I know) and they may be harboring gluten from our past. Do I do the plates and cups too? only the plastic ones that the kids eat off of? Do I gut my kitchen and build new? (I am tempted at this point...) Any sage advice from the pros out there?

Tracey

Also make sure that if she is taking an art class that she either wears gloves, non-powdered, or is extremely careful about washing throughly and not touching her mouth or nose until she does. Many glues, paints, clays and even chalkboard chalk can be a source of contamination at school. Do replace the pots and pans and your toaster, I would not worry about the dishes just wash them well but if you have any wooden utensils or cutting boards they should go. If you have pets use a seperate can opener for their food and wash throughly after feeding them. It can take a while to heal so be patient, and be very glad they found this before she had stopped growing. They didn't in my kids. My 5 ft tall son said a while ago it will be interesting to see how tall his children grow to be. He will never allow gluten foods in his home.

amandasMom Newbie
amandasMom
Posted
  • Author

I had never even thought of ART CLASS!!!! She always has her hands in something. Chalk?? Really? It never even occurred to me. I'll be talking to the school again tomorrow.

Thank you all so much for the enlightening replies. She seems to be doing a little better this week, but she is getting upset stomachs after some dairy foods (Not all, just some.Hmmm.) So, we are attempting dairy free for a bit to see if it helps.

Tracey

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    • Dora77
      Ocd making gluten fears unmanageable. Need advice

      By Dora77 · Posted

      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. 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