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Not So Gluten Free


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10 replies to this topic

#1 Mommy2GlutenFreeChild

 
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Posted 30 October 2010 - 08:01 PM

We really and truly thought we were doing what we needed to do, to keep my son Gluten Free, but they explained so little to us and I really had no idea that there was so much more to it then taking away normal bread, pasta et. So many simple items have gluten that you would never guess.

Last Friday (a little over a week ago) my son was very ill. He had been having unexplained bruising all up and down his legs. He was tired all the time, falling asleep out of no where, having night sweats, and constipation, severe with distended stomach. Many issues.. some had been on going, some new. We finally took him to the ER where they started testing for all kinds of things and we finally learned that his Iron and Iron storage levels were beyond super low. His vitamin K was super low. And of course, his levels for gluten or what ever that is were super high. He was in the hospital for 3 days because of how sick he got. So he has been.. was getting gluten some where some how. And has been apparently for a long time.. So he really hasn't been Gluten Free since Feb when we learned about all of this.

After going over it with me, the Dr and a nutritionalist and I figured out that it was simple things... using the same toaster for his gluten free waffles/bread as our bread.. using the same spaghetti strainer for his pasta and ours.. and even missing gluten in items I had no idea had gluten like baked beans and seasoning mix for taco meat etc. I feel like an idioit and I was making him sick without realizing it.

Until now, the only sign we ever had of my son having gluten was constipation. He would get constipated and not have a bowel movement for a couple of weeks and when he finally had one it would be hard and painful. But other then that, no other signs.

He is now on miralax daily, and Iron daily. We have bought a new toaster just for him and a new strainer for pasta, but I am so confused still.

Do I need to buy new plates and spoons just for him, or is washing them after use good enough? How do you learn to read labels, there are so many big and confusing words that I don't understand. How important is it to worry about school supplies? I mean, he doesn't eat glue, or stickers.. can just touching the stuff make him sick or does he have to actually ingest it?

You would think by now I would have this figured out, but apparently I don't.. I just.. man I don't know how to do this.
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Mother of 2 kids.
1 Child age 5, dignosed with Celiacs Diease in Feb of 2010.
Learning to help my son live Gluten Free.

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#2 SGWhiskers

 
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Posted 31 October 2010 - 08:15 AM

Many of us have had similar experiences to you. It's unfortunate that your little one had to get so sick for doctors to get you good information, but now you're on the right track. Kids heal faster than adults and your son has been diagnosed at a young age. He'll be feeling better in no time.

Kitchen plastics, cast iron, scratched non-sticks, and wood will need to be replaced for him. Glass and metal are non porous and can be scrubbed well between uses. If you find that your glass or metal cookware has stained on food, you will want to get out the brillo pad for a good initial scrub down. Some kitchen gadgets that will need to be replaced for him include can openers, cutting boards, maybe a whisk, pizza cutter, turkey baster, the blender, the toaster, strainers, pizza stone, anything that does not wash easily or thouroughly. If cost is an issue, a single large deep sided skillet, some dollar store utensils, and an new can opener can get you started. Just skip using the old stuff with his food. Oh, think about if your pot holders get cross contaminated when you lift cassaroles and cakes in and out of the oven. If your plates are glass, you don't need to replace them. Just make sure that the gluten is prewashed off the plates before going in the dishwasher. Oh, and he needs his own sponge.

OK cooking: keep the spagetti water splatter from splattering into his noodles. Lids help. So does always making sure his food is lifted over the gluten food and not the reverse. Regular flour and dry baking mixes are banned from your home now. The flour goes airborne and causes a reaction. If you feel you must use regular flour or pancake mixes, make sure he is out of the kitchen for at least 30-45 minutes while the flour settles. Then wipe down the cooking and eating surfaces.

Shopping: Yes, gluten is in everything. I consider everything gluten unless proven otherwise. Plain meat, plain veggies and fruit, and plain rice and potatoes are gluten free. So is plain dairy, but dairy gives a lot of celiac adults problems in the beginning and maybe permanently. He might feel better without dairy for a few months while he heals and then reintroduce. Vitamins and medicine all need to be proven gluten free as well. There are several brands of children's chewables that are gluten free. General Mills, Unilever, and Kraft all will list ingredients that have gluten. You don't need to worry about things like spices or food starch from them unless it says wheat, rye, barley or oats on the ingredients. There are other brands with the same policy, but I only have these 3 memorized and that gets me through the grocery store. Seasoned meats like sausage, lunch meat, hams will need to be proven gluten free. Hormel has a great labeling policy and will often say gluten free right on the label. There is some debate about whether poultry may contain gluten, but it is safe to say wheat must be listed as an ingredient if is included in a broth injection. I've always read my labels and never had a poultry problem and I'm super sensitive. Ore-Ida has a selection of french fries that are gluten free. Check the website. They also print gluten-free in tiny yellow letters in the side seam of many of their gluten free items. Double check, but I think the shoestring and steak fries are gluten free. Udi's bread tastes the best. Van's makes frozen waffles. Betty crocker, Pamela's, Bob's RedMill, and Annies are all trusted companies with good products. There are lots of other small companies we love to support as well. Amy's makes lots of gluten free products, but there have been several reports of people getting sick from their products. She has a shared facility and cross contamination is a concern for many of us with her products.

Crafts/school supplies: At his age, yes, these are an issue. I will go hunting for the lists of gluten-free supplies. The reality is that plaster of paris gets airborne and playdough gets in the hair. His table gets coated in glue and pasta necklaces touch the lips. As an adult, I find that I can easily cross contaminate myself with all these items. Forget the hygine of a 5 year old and his peers. If he is in school, you should work with his school to develop a 504 plan to establish what is safe and allowed for use in his classroom. If he is in daycare, you will need to set some rules for safe craft and lunch time.

Sensitivity: Imagine that it only takes a tiny virus or a spatter of raw meat to sicken us. Gluten is the same way. Once the body sees it, no matter how tiny the amount, it sends up the immune system and we start to feel bad.

Family testing: The standard protocol is for all first degree relatives of a celiac to be tested every 3-5 years for life. That means that mom, dad, and siblings need testing. Even if you test negative, you may find that you have some level of sensitivity to gluten and decide to take the whole house gluten free. The dog! If your son gets into the dog food or if the dog carries his food or cookies around the house, you might want to look into other food for him (or the cat). I feel sooooo much better when hubby's bird is on a gluten free diet because he flings wheat dust into the air and bird food onto the ground. Never get a bird.
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#3 GlutenFreeManna

 
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Posted 31 October 2010 - 08:46 AM

Hi, Try not to be too hard on yourself. It takes time to learn all the ins and outs of the gluten-free lifestyle. You have come to the right place. First, your nutritionist and doctors are great! It's amazing that they helped you figure out some ways your son was getting gluten. They are right about the cross contamination risk. The main things you need to worry about besides the toaster and the strainer are cutting boards (esp wood or plastic), serrated knives that are hard to clean, non-stick pans and cast iron pans. Gluten can get in the crevaces off all these thing and contaminate gluten-free food. Stainless steel pans can be shared if you make sure you scrub them clean really well before using. However for simplicity sake if might help if you got one new pot and one new pan for gluten-free food use only. Mark the handles somehow with marker or tape to remind everyone that those things are for your sons food only. Silverware and ceramic or glass dishes should be okay to share. I would not share plastic plates and bowels however that have been used for anything with glutne in the past. Also some very sensitive individuals have mentioned on here that they noticed a big difference when their entire household went gltuen free because gltuen may be contaminating dishes in the dishwasher. As long as you rinse all your dishes well before putting them in the dishwasher you should not have too big of a problem with that type of CC. When you prepare food for your son never do it right on a coutertop. Get him his only gluten-free cutting board and use that or place some paper towel down. It also helps if you can also make one section of your kitchen gluten-free only, like one countertop where you never prepare Gluten foods. Get him all his own condiments for anything that is not in a squeeze bottle-- PB and jelly, mayo, butter, etc. Anything that you may have spread on regular bread and then dipped the knife back in is contaminated with tiny gluten particles. Even if you can't see the crumbs they may be there. If you make a sandwich with cheese and meat, touch the bread and then touch the cheese, the cheese is contaminated and not safe for you son to eat. Someone on here had a brillant idea they have shared to get some colored tape and mark anything that is not to be shared. You can get some tape in your son's favorite color and mark all his own condiments, lunch meat, cheese, etc. That way the rest of the family knows not to use it. Be sure to wash your hands really well after you touch anythign with gluten.

As far as school, besides glue and stickers a few things you need to be on the look out for is play dough, snacks, paper mache, macaroni art projects, etc. Even if your son doesn't eat these things, just getting it on his hands is dangerous. Small children often touch their eyes, nose and mouth. If he has been handling gluten then it's easy for him to acidentally ingest it. While on the subject of accidental ingestion, you should check all personal products he uses as well--things like shampoo, soaps, hand sanitizer, etc. While shampooo with gluten in it may not hurt him on his head, it is easy for it to get in his eyes or mouth during bath time and then he has gotten some gluten. it's much easier to just make sure you are using gluten free products. You might also want to consider products you use on yourself like lotions containing wheat germ oil (Bath and Body works has many of these types of lotions and they made me sick). If you put this lotion on your hands and then touch your son or things your son comes in contact with there is a possiblity of CC. If you put lotion with gluten on your face (or make-up) and your son kisses you then he can get glutened.

While I'm on the topic of you changing your own personal items to gluten free, have you had the rest of the family tested? First degree relatives are at a higher risk of having some form of glutne intolerance/celiac. Even though you may not be experiencing severe symptoms you may be surprised what minor issues may go away when you go gluten free. Anyway, I hope this long response helps to answer some of your questions. Feel free to keep asking questions here.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#4 cassP

 
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Posted 31 October 2010 - 09:17 AM

ok, so yes- dont be so hard on yourself- its a learning process....

?- if your son is gluten-free- maybe you & your husband should get a test... the PREDISPOSITION is genetic.. and reportedly only 1 in 6 Celiacs have gut symptoms... many are asymptomatic. it's possible for either you &/or your husband to have a gluten intolerance as well. some studies have found that many undiagnosed go on to have normal long lived lives- BUT there are others who end up with serious neurological illnesses... heart disease, or even cancer..
it's worth looking into BECAUSE- if you two found out that you also needed to avoid gluten- then it would be easier for you three to be on the same boat & not stress about CC too much.

ALSO- VERY IMPORTANT- you really have to research- it is RIDICULOUS what they put wheat or gluten or barley in!! i thought I KNEW EVERYTHING- but geez i am still learning-
ie: i already knew that wheat was in soy sauce- but i didnt know that wheat & gluten were in mini altoid mints or several medications & mixes & sauces.. ive had to watch over my mom when she cooks- to make sure she doesnt pour anything made with Demi-Glace on my meat (because they put gluten in that! :angry: )... i also cant eat my favorite Lindor Truffles anymore because they put Barley Malt in it!
it is beyond annoying... i am VERY lucky that i am not a Celiac who gets immediate "D" from these minute amounts- but i have to remember that it is causing destruction inside of my body- to my stomach & small intestine, and now my thyroid.

good luck learning it all- and think about testing you two
:)
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#5 Coinkey

 
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Posted 31 October 2010 - 08:41 PM

All the advice the others have given you is great. I can give you some advice for eating at school though (I work in a daycare). The tables in kindergartens and daycares are used for both eating and playing. That means the playdoh is used on the eating surface and trust me- it does not wash off well. So, I suggest you get him his very own place mat for his food. Teach your son how to wash his hands extremely well before eating because other children play with playdoh then go and touch everything else in the room- where he'll touch it too. Just touching it probably won't be a problem but if he doesn't wash before touching his mouth then he'll ingest it. Everything you learn about Celiac- teach it to your son too. I have a 3 year old in my daycare with celiac and before I learned that I have a gluten intolerance too- he told me if he couldn't have something and set me straight- so keep your son knowledgeable as you gain knowledge!
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Self diagnosed as gluten free as all tests were negative and the doctor was completely useless.

Gluten Free since June 2010
Suspecting soy and milk as of June 2011


#6 Mommy2GlutenFreeChild

 
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Posted 22 September 2011 - 04:32 PM

I just realized that I never thanked any of you for your helpful advice last year. I read stuff on this board all the time, but I don't type very much and I am sorry I didn't reply. I read what you wrote and just never answered back.

All the advice last year was great and things have gone pretty good. Until he started kindergarten this year. He was in preschool last year and we adjusted.. but his symptoms have come back recently and we couldn't figure out why, until he announced that he had been playing with Play Doh at school. :-/ We have had another discussion with his teacher. I think it was an honest mistake, but one that has causged him to go back to having issues he had last year that we thought we had under control. I feel like we are back at square one.
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Mother of 2 kids.
1 Child age 5, dignosed with Celiacs Diease in Feb of 2010.
Learning to help my son live Gluten Free.

#7 come dance with me

 
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Posted 22 September 2011 - 05:56 PM

Our first 2 months were like that. We are a completely gluten free house now because it was too hard to have gluten-free food for Miss 8 and gluten food for myself without making her sick. It's all trial and error really and it is a huge learning curve for everyone involved. The more you learn the more you realise you have so much more to learn still!
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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#8 RL2011

 
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Posted 22 September 2011 - 06:20 PM

I have to say that those replies are excellent. I suggest anyone without celiac disease or gluten issues that shares a household with a celiac disease person read and understand how CC can affect a person with celiac disease.


Great responses last year! :)
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Richard

#9 maitrimama

 
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Posted 22 September 2011 - 07:00 PM

OMG my head is spinning! My 15 yr old daughter was just diagnosed via endo/coloscopy with celiac and ibd, I would gladly take her place in a heartbeat. The good news is we are meeting with her GI tomorrow. The bad news is that here home life is not simple. Lives with her dad, sister, step-mom (who she doesn't like) & step-brother who has asperger's (though I technically don't know that). She is w/me (2 hrs away) atleast 1 w/e a month and I am up there for activities all the time. I live my dad in a big house with cats and dogs and people coming and going. How are we ever going to make this work. She is out #1 priority but my head is spinning!
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#10 carecare

 
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Posted 23 September 2011 - 04:57 AM

I agree....great responses and it has made me reevaluate how I have done things in this household (or should I say have not). Taking a box out and filling it with a lot of items that this gluten free household should not be using. Thanks for the kick in the butt!

Glad to hear you have figured out how to keep your son as healthy as can be!

CC
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#11 Ellers

 
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Posted 27 September 2011 - 08:29 AM

All of these responses are great, and I was in the exact same position as you almost 4 years ago. I thought I had it all under control - I made my son's sandwiches with gluten free bread and thought "well this isn't too hard!" and then I found out about cross contamination and had to start over. It's very daunting at first, but after a while, it becomes second nature. I wish I'd known about this board back then.
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