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Concern about gluten free cross contamition

Discussion in 'Parents of Children with Type 1' started by sweetkid4, Apr 11, 2013.

  1. sweetkid4

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    We finally got an official celiac dx...:( I have questions about how cautious I need to be with cross contamition??? I have a friend whose daughter is so sensitive to gluten that they can not ever eat out , she had to use different plates, utensils , pots and pans, different shelves for GF food, separate toaster, etc....eventually building a second kitchen........... I am freakin out!!!!!:eek: Is this common?
     
  2. Sarah Maddie's Mom

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    All I can tell you is my experience.

    My sister and I both have celiac. She did the biopsy, I did not, just the blood work. She has approached it as your friend did, I have a more relaxed attitude. I can't say how I would approach this if my child had celiac but for me, I made the decision that I could cut gluten from my diet but was unwilling to stop traveling, eating out, eating at friend's homes. I do not eat a piece of cheese that sat on a wheat cracker, but I will not look for a clean knife to cut a new slice.

    Celiac, like D is a life long condition. I avoid all gluten foods but I do not keep a separate set of cookware. How you approach this really depends on your personality and your overall risk aversion.

    Take a deep breath, do some reading and realize that your son has been eating gluten all of his life and has his whole life to avoid it, so cut the obvious foods now but take a moment to figure out the long term plan. In other words, a little potential cross contamination isn't suddenly toxic. Better to approach this with a long term view and not to suddenly go on hyper alert.

    Sorry you have to deal with this. It's hard, but it's not the end of the world :cwds: really, it isn't.
     
  3. sweetkid4

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    Sarah , thank you so much for sharing your experience with me. I guess my friends daughter is so sensitive that even a crumb of something containing gluten will make her extremely ill. They even have to watch what crayons and glue she uses at school, and what kind of toothpaste , shampoo and lotions the whole family uses! Talking to her was really freaking me out, lol
     
  4. swellman

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    This is the exact thing that has me so confused and so paranoid about a Celiac diagnosis. I was under the impression that "real" (and I apologize for the ignorant characterization but only say this to show my ignorance) celiacs have to be super, uber, ultra vigilant with all gluten. I have recently seen other sides to this and now feel more comfortable. However, the question I still have is that if one was not seriously symptomatic before diagnosis is it safe to assume that a cross contamination would not be all that serious?
     
  5. Joretta

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    My understanding is it is like insulin, carbs, sickness, exercise and all other diabetes stuff no two are exactly alike. Some celiacs are highly sensitive others aren't. It is live and learn.
     
  6. Sarah Maddie's Mom

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    I think that the really tricky thing about living with celiac is that it's really hard for some people to gauge their reaction to gluten. By and large I don't feel all that different when I inadvertently eat something with gluten - other people feel it right away. Nonetheless, as I understand it, even small amounts of gluten trigger the autoimmune response and that does cause damage. Obviously there is a greater incentive to be hyper-cautious if one is hyper-symptomatic. That said, I really encourage you to make the obvious changes now, but read up and try and find that sweet spot of aversion that you and your son can live with. I know many smart, educated and informed people with celiac who manage to live pretty normal lives. You need not be hyper-anxious, just take it one step at a time.;)
     
  7. Darryl

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    We were very concerned about it in the beginning, but we use "best practices" when eating at restaurants, meaning that we talk to the chef, ask a lot of questions, and then enjoy the meal. Leah's celiac antibodies settled back down to the normal range after 2 years on the GF diet and have stayed normal since then despite eating out quite often. I would be careful wherever you go, but don't worry about it beyond that. You'll see in the annual blood checks if there us a problem.

    The autoimmune response to celiac is a long-term effect, so any acute "sensitivity" to cross contamination may or may not be directly related to celiac.
     
  8. MamaC

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    My daughter was diagnosed with celiac 21+ years ago. She was very unwell before diagnosis, but had a remarkable and rapid recovery once she started the diet. While she was under my watch, I was vigilant about keeping any trace of gluten away from her, and her celiac numbers were awesome...till she hit high school and started making her own decisions. :eek:

    When she was diagnosed, in 1992, we elected NOT to go GF as a family. I did set aside a small toaster for her, but did not have a full GF complement of utensils or cookware. I'm pretty particular about clean dishes, and I remain convinced based on lab work) that we did this successfully.

    She's 24 and on her own now, and has a good knowledge of and interest in maintaining a gluten free diet. In fact, she's become quite the cook, and made her roommate her first lasagna - gluten free.

    That said...she's never displayed any symptoms of gluten contamination, even though she openly admits her self-care during HS and college was less than stellar, and she also admits that she abandoned all pretense of a GF existence during college.

    So...some people are super sensitive, and some are not. Knowing what I do now, I'd have done things just the same all over again. (Side note: I did take glued envelopes out of the mix ;).)

    Good luck! The good thing about gluten being Public Enemy Number One these days, is that there is so much awareness and so many more easily available replacements for everyday gluten-containing items.
     
  9. Beach bum

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    Like diabetes it too is a YCMY (your Celiac may vary).
    My good friend has a mixed home, but she has her own toaster, cutting board, wooden spoons and a section of the counter she cooks at. She uses everything else in the house that can go in the dishwasher. Her non gf family members are very careful to stay out of her area. She has been crossed contaminated, with little or no ill effects.
    My neighbors sister, is very sensitive, to the point within 30 minutes of eating even a hint gluten, she gets a strong headache and stomach ache. However, she was not diagnosed until an adult, and much damage had been done to her system (had been ill all through childhood but never diagnosed), so I often wonder if her system is so sensitive because of that anything will irritate it. Her daughter on the other hand, was diagnosed in her early teens at the same time as the mom, and can tolerate gluten to the point in college she chose to not acknowledge her Celiac. She's back to GF now as she realized it really does matter.
    So, it's just a matter of figuring out what works for you.

    Funny story about my friend. They have a cabin up in Canada and she has her special toaster etc. Well, a squirrel broke in and got into some non-gf rolls and flung them around the kitchen. Chunks of rolls everywhere! Where did he fling the rolls? Into the gf toaster:eek: Needless to say, my friend was a bit miffed!
     
  10. sweetkid4

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    Thanks everyone! :cwds: you have helped me calm down ( a little, lol) and realize , just like with D, trial and error~ live and learn . Will give it my best shot! Thanks again for all the info, support, and funny GF stories :D
     
  11. Meredithsmom

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    My DD never had any symptoms. But the GI doc said her celiac was advanced. So, I did my very best to make sure not even a crumb of gluten has crossed her lips since Aug. 2011. We have a dedicated GF toaster and that's about it. I use the same pots and pans and utensils. Of course, if we are having pizza, the gf pizza gets cut first before the regular one and then the pizza cutter doesn't touch the gf pizza again.

    Based on her last labs, which is the only real way I have to see if my efforts have been successful, everything is working fine. The other day, my husband wasn't sure if some sausage was gf. DD said she'd eat a little and if she got a tummy ache we'd know. No tummy ache, so we carried on. But, with her that doesn't mean it was gf. It just means she didn't react with physical pain.

    Take a deep breath. You can do this.
     
  12. AmyJoeBut

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    Wow! You guys are making me feel so good, as well. My son has been asymptomatic and we also just got our positive test results last night. Even at 6, he has been so great with diabetes but not being able to eat his favorite foods at his favorite restuarants made him cry. I felt like I was punched in the gut, I can only imagine what he feels like!

    Plus, I have been reading so many things saying that he would have terrible reactions to gluten in a few months after things cleared up and I was so worried about it for him. It is nice to see that there are people that still have minor reactions (outwardly at least) to gluten.

    While I don't know what the future will bring, it makes it a little more bearable to know that he will not necessarily be bathroon or bed-ridden for days if he has a crumb of gluten.

    Thanks!
    Amy
     
  13. Chippy28

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    Seems like a lot of us have, unfortunately, been diagnosed recently. I received my positive biopsy results yesterday.

    At 29, I may have shed a tear or two over this.:rolleyes: Eating GF at home hasn't been too bad, maybe a bit of an annoyance, but not hard. However, I am really missing eating out already, but I am a bit scared/intimidated by eating out now. Also, knowing that french fries (one of my most favorite foods) are usually cross contaminated and therefore off limits now, watching others eating them in front of me might actually cause some ugly tears at the restaurant!:eek:
     
  14. Flutterby

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    We are careful, but we have relaxed a bit. Se does have her own toaster, pot and strainer for pasta but not separate dishes..we as a house hold did not go gluten free. She didn't have much in the way of symptoms before diagnoses...once she was diagnosed and we started to see some things change did we realize they were actually symptoms of celiac. She still doesn't have any symptoms that are obvious to any of us if she accidentally gets gluten. At school she ended up getting regular gravy instead of GF gravy, the school called me freaking out. I told them what to look for in symptoms, but told them really anything out of the ordinary could be a symptom. She never had any outward symptoms which really worries me because then we don't know if she's getting any gluten. I don't feel confident in her yearly blood work because her results were fairly low compared to the amount of damage she had.

    She has so much to deal with that I do 'look the other way' sometimes..if we are out and they have fries that don't contain gluten but are fried in a shared fryer, I'll let her have a small serving...there are only trusted places I will do this, she's never had a reaction ( again, that we can see or know of). If there is a food that is questionable, like containing modified food starch that isn't claimed, I'll let it slide....however, she doesn't ever have straight gluten, like bread or pizza, gluten cereals etc.


    You will really need to see now he reacts. I'd get some new pots for pasta, a cutting board for gf items etc, but I wouldn't get new plates, silver wear and such unless you are seeing a need for that.
     
  15. swellman

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    This confuses me more than ever ... so, you're saying your blood tests were not indicative but the biopsy showed significant damage? This is the exact opposite of high antibodies and a negative biopsy. Seriously ... I will speak to the endo our next visit but I have very serious doubts that he can explain all this to my satisfaction.
     
  16. Flutterby

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    She had positive blood test, but they weren't alarmingly high results..her first test was in the I between area between negative and positive..I can't remember the exact number, but negative was under 20 and positive was over 30, she was 28 or 29...when they redid her lab through a different company over 4 was positive. She was 14... Her scope two weeks later showed incredible damage, she had absolutely no villi. Clearly not something that was just developing but rather something that had been going on for sometime.


    They told us right after her biopsy that there was not a doubt she had celiac, we got the official results a few weeks later from the biopsy. She went gf the day of the endoscopy. I really believe she has had celiac a lot longer than we knew about, way back to when she was dx with diabetes but all her test were coming back negative. There is just to much that has changed/disappeared since going gluten free that these things had to be symptoms of celiac. It also took her well over a year to heal (I don't know exactly how long, just going by the changes we saw).
     
  17. deafmack

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    Something tells me that it is more than celiac disease. I would suspect a corn allergy becasue corn is in everything is some form and gluten isn't as prevelant in things as corn is. I suspect that becuase their child has celiac they are just assuming it is gluten related but something tells me it is more pervasive and I would look at corn as being the culprit. This is not to dismiss the celiac but I am saying I think it is more than just gluten and would suspect another allergy that would be causing the reaction and I would not be surprised if it wasn't corn.
     

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