Just diagnosed with celiac disease
dillschnick
Posts: 8 Member
Needless to say, I'm freaking out a little. I've scrolled through some of the discussions in the group and I am seriously starting to panic. Can't use your stoneware any longer? Toaster bags? Two separate kitchens for cooking?!?! WTH has been handed to me???? I had got my mind wrapped around the eating changes but this is taking it to a whole different level. Help me out here folks!!
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In my fantasies, I would have two kitchens, but in reality, that is not in our budget. You just have to be very careful, and train your family well. We do have duplicates of a lot of things, our fridge and cupboards are definitely fuller. For example, we have 2 mayonnaise, two peanut butters, jams, margarine or butter, anything that they will dip a knife into and spread on bread, then re-dip the knife, is obviously now contaminated. If they grab chips from a bag, their hands had better be clean and gluten free. Yes, you can't use the same toaster without toaster bags. Not sure exactly what you mean by stoneware though.
For the most part, I cook completely gluten free meals. It just makes life so much easier. I have a separate strainer for me, that I use exclusively for my fruits, pasta, etc.
If I want to bake something gluten free, (which I don't do often due to calorie restrictions
) I have a routine I go through. I scrub my mixer down thoroughly, and rewash every (already clean) measuring cup, spoon, spatula, baking pan, the works. Just to be sure. 0 -
Contaminated? I'm really confused. I thought gluten was through ingesting the food itself, not through anything that may have come into contact with.0
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There are other threads on this group that will help you with other gluten containing things like lipsticks & balms, medications & supplements containing hidden gluten, etc. Some may be so sensitive they need GF shampoos (no wheat protein to thicken hair), and other makeup to reduce skin contact (ever wonder why the nicotine patch works??). Blankiefinder & I have the same sort of kitchen routine, lol. I don't have kids, but I cook GF for both my husband & myself even though he doesn't have to be. He has his own snacks (indian savory stuff, muffins, Pringles) that I don't even handle, and his own pizza pan, pasta pot (for the occasional ravioli that he likes), and strainer for when he really wants certain foods. He also has his own condiment jars that knives go in so I don't get contaminated by crumbs. My condiments are very boldly marked in felt pen on the jars.dillschnick wrote: »Contaminated? I'm really confused. I thought gluten was through ingesting the food itself, not through anything that may have come into contact with.
Take a deep breath, dillschnick, it will get easier. We buy raw nuts from a wholesaler so that we don't have to worry about contamination from spices/salts or the roasting process.
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Thank you for all that. I will definitely have a lot of questions for the specialist on Wednesday. I know basically nothing about this condition other than what I've read online which can scare the bejesus out of you. This is a recent diagnosis (the last week) and it was handed to me the day before I had weight loss surgery. It has been a lot to try to asseminate over the last week on top of having 90% of my stomach removed and the changes that come with that.
I actually do have two kitchens (oddly enough) that we were going to remodel and get rid of one but that plan is going to change. Do I need separate cooking utensils? Pots and pans? Bakeware? Plates? Silverware? Should I just keep two seperate pantries? Bathroom stuff? We currently have seperate bathrooms but I had no idea that it can go as far as being in the shampoo too.
My surgeon seemed pretty concerned and got me into a specialist as soon as he could. I don't know how I should handle all of this but, it makes so much sense now that I look back at my life. I wish I was diagnosed years ago...........0 -
You don't need separate bathrooms, just separate shampoo bottles.
For washing dishes, I try to wash anything GF first before I wash the things that have gluten on them, and then rinse. I do have one pot that I use for pasta, and the rest of the pots are only used for naturally GF items, or my GF pasta.
Yes, cross contamination is what gets us most often I would say. It's easy to avoid what you can see, harder to avoid someone putting your fork on a table cloth that might be contaminated, or passing a bun to the person beside you, reaching across your plate, or digging into your butter, peanut butter, whatever, when you aren't around to see it. Plus keep in mind that sometimes companies change recipes, so what used to be safe might not be anymore, and you wouldn't know unless you checked the label every time. Lee & Perrins did that to me, when they changed the recipe unannounced, here in Canada only. Now they use malt vinegar and I didn't catch it. Now I have to get people to bring me L&P worchestershire sauce from the US, what a pain! 
Restaurants are probably the biggest challenge though. Eating home is safest!0 -
I was diagnosed about a month ago and a few days later I found a book on clearance called "Celiac Disease the Hidden Epidemic" it is written by the director of the Celiac Disease Center at Columbia University and while I am not yet half way through it has been an amazing resource in understanding and beginning to understand this disease. Also you can call the center and they will send you a free information packet. I think this book is included but my packet hasn't arrived yet so it may be another book ( I called them this last week since I had some questions no one else had an answer for and was amazed by how willing to help they are. I live in Ut and they are sending me this packet just because I reached out to them for help!!0
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Btw the centers nutritionist told me that so long as an item can be thoroughly cleaned or is kept only for GF it is safe. So wooden cutting boards must be kept separate as well as wooden spoons but she said best to not even keep them around. Teflon and other nonstick ware is absorbent so if used must have separate set as well, same with cast iron. Colanders are a gray area depending on how cleanable they are, mesh ones don't risk it but others are apparently a personal judgement call.
A side by side toaster is not able to be cleaned well enough however toaster ovens are safe so long as cleaned between gluten items and GF items use so no bags needed there.
As I am attempting to get a grip on this I have decided from what I have learned that the risk is currently to great for cross contamination in my home (I have 2 little children and my parents are currently living with me since my father is recovering from dementia and brain surgery) If they need a gluten fix they can get it else where0 -
Wow. Thank you ladies for sharing. My husband and I are discussing just everything going gluten free so we don't have to worry about this cross contamination thing.
Have any of you had your children tested? That was one thing that stuck out to me was that this is hereditary.0 -
@dillschnick : I have posted a couple of studies published just lately on Children & Celiac Disease. It's in the other thread here: https://community.myfitnesspal.com/en/discussion/10144847/i-grieve-for-the-loss-of-gluten#Item_8
There have been several articles from Medscape in my inbox this past week or two, but it is a little time consuming to read them all and try to copy & paste here. I promise I will take a closer look and post on the specific thread I started in this group for verified medical studies on Celiac Disease & Gluten Sensitivities.0 -
Thank you everyone for your responses. It's such an overwhelming thing to come to terms with. I'm grateful that I'm still on a liquid only diet for the next four or five weeks so it gives me time to make the adjustments in my kitchen and pantry and maybe try a few recipes out on my girls and see if we can get away with just having the whole family go gluten free.0
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I didn't realize how careful I had to be at first, but the longer I have been gluten free, the more aware I am of when I do get glutened. I helped my new daughter make homemade play doh with regular flour and was sick for two weeks! It was from what I inhaled as well as the tiny bit that floated through the air and landed on my lips! So now I keep NO regular flour in the house. My two new daughters (adopting my sister's granddaughters) are not celiac, so I do let them have things that are premade with gluten but do no baking for them. And we have separate peanut butter jars, jelly jars, mayonnaise jars, even honey bears! It is a bit frustrating since I don't feel I can let them make things for themselves for fear of contamination, even with the separate jars. And I don't sit at the table with them for fear of their crumbs landing on my food. I stand in the kitchen to eat while they eat in the open dining room. They have been very understanding and help me watch for cross contamination!0
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Dillschnick celiac sprue is hereditary. Read the book by Dr Green recommended by another poster for a better understanding.
God be with you as you figure this out. It's a lot easier now than it was 17 years ago when we started. There was nothing in the grocery store except gross EnerG rice bread. Blech...
Yes, get your children tested. ...0 -
Ugh. I'm sorry everyone. I have Celiac (runs in the family with the females), but not nearly as sensitive. I can have crumbs if they happen to get mixed in. I can't imagine breathing in flour and getting sick! I'm usually sick for 2-3 days with the usual - vomit, cramps, skin itchy, diarrhea, fever. But I have to eat at least 2-3 bites to get this. I've given zero thought to Shampoo or other products. My grandmother and cousin have this. I've not been officially diagnosed as I needed to eat gluten to get the biopsy, but I was vomiting so... no way I was going to eat gluten for 3 weeks just to hear I have Celiac. The symptoms mirrored my cousin and grandmother - basically vitamin deficiency for years which was exhaustion, hair falling out, etc. The usual. @dillschnick It took me 5 years to feel somewhat normal again. I think my stomach healed finally and I was absorbing vitamins. I get my vit levels checked every 6 months and I'm creeping toward low end of normal and it's been 5 year GF + supplements. @miriamwithcats I can't even imagine... I'm sorry... that sounds awful.
My grandmother was sent home to die in the 60s, because they didn't know what was wrong with her. It took a friend to figure out Celiac, and she lived well into old age. This has come so far, and after years of explaining to people what gluten is, at least it's a common word now. She'd have been so happy with all the options we have now. I hope everyone figures out what's best for them. This sucks, mostly in that convenient food is unavailable (burgers, burritos, fried finger food), but it certainly forces me to eat healthier ! And I am eternally grateful for feeling NOT EXHAUSTED anymore.0 -
@maricris823 It is kind of a blessing that all the convenience foods are usually contaminated (wheat is cheap as a filler in products)... it pushes us toward a healthier diet anyhow. Although they are finding out now that obese people can have celiac disease too. One doesn't necessarily appear emaciated, but is still undernourished in those cases.0
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When I was diagnosed years ago I got rid of non- gluten food except the kids snack, and occasionally they had regular bread. They took it really well, my daughter still freaks out about putting bread or something on a counter so she doesn't contaminate me. I couldn't be happier with the "gluten free" trend diet- it's certainly made my life tastier and easier to manage2
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My wife was also diagnosed with Celiac and I have starting eating gluten free to support her. We have found many items that taste the same if not better than regular gluten foods. For example the best bread I have tried so far is Udi's new bread, it is really good and not dry like so many others are. Then there is the Barilla gluten free pastas which they also make lasagna noodles as well. Most things you eat already are gluten free, (some meats, veggies, fruits and such). You can do this, there is many things out there that taste great.0
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I have Celiac disease but I am not scared as some people are.. I am gluten free but don't go overboard by buying all the flours, and products that are out there... I keep my gluten free foods separate and seem to do well using my methods.. When I was diagnosed, I did buy the flours and made my own stuff. Now there are so many things available..Check your local Walmart or grocery store.. Lots of good products. Brown rice and corn are better for pastas. I have found that I can "cheat" every now and then..very small amount of gluten.. I also can do the "chew and spit" as recommended by a doctor.. If you need to taste something, you can chew it up and not swallow but spit it out into your napkin..(take it with you) Works for those things that I really "have to taste".. Check out a company called Udis.. good tasting products...0
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@dhencel - I'd be very wary of the chew and spit method. Many, if not most, Celiacs are sensitive enough that even a crumb of gluten will affect their health. Please check out the posts from the beginning of this thread for more on contamination via skin and mucous membranes. Just because you may not have overt symptoms from 'chew and spit' doesn't mean you are not damaging your system still. I agree though that it's healthier to just not buy most of the mock products and eat closer to proteins, veggies, nuts, fruit, healthy fats.
You might want to check this thread for more scientific articles (sorry some are VERY technical) on Celiac disease and NCGS: community.myfitnesspal.com/en/discussion/10104290/medscape-medical-professionals-continuing-ed-site-celiac-disease-gluten-sensitivity-articles#latest0
