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kim01

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Hi everyone I'm new to the group. I 39 years old and have 4 kiddos. 2 of them are a set of biological twins *boys) and 2 little girls who we adopted through foster care. We also do foster care so basically have 5 kiddos even 6 at times. I got diagnosed with celiac about 2 years ago. It started shortly before we brought our baby girl home from the hosptial. I also have type 1 diabetes since i was 18 months old. It started with me getting the flu. I have only been "sick" a few times in my life up to that point. I came down with the flu. couldn't eat anything for months.i went from 135 to 108 lbs. I am very very sensitive. I have been in the hospital many times before we found out what was going on. And since getting the diagnois have been back a handful of times. just b/c i can't keep anything down (cross contamination) and sugars all over the place. i just got out of hosptial last weekend b/c of celiac. I hate this desease it sucks.  i wouldn't wish this on my worst enemy. When i get cross cantaminated i get violentally ill for days. Thanks for letting me vent a bit.

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Welcome, Kim. You need to learn how to avoid cross-contamination. In the coping section, pinned to the top is a thread called "Newbie 101". Check it out. It'll teach you so much. I know it must be hard in a house full of kids but you MUST, for your sake and for theirs, get strict with yourself. There are plenty of folks here who live in mixed households. Believe me, it can be done. Even if you have to keep your own food, condiments, toaster, etc. in a locked cupboard. You'll just have to keep going back to the hospital if you don't, and of course you know you run the risk of further autoimmune diseases that'll make celiac look like a piece of cake. Sorry if I sound harsh, but it's the truth.

So go check out that thread. Then cruise around the site and you'll see how others with non-celiac kids and spouses do it. Others will be along soon to chime in too. :)


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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Welcome to the board.  :)

Cc is a problemwhen you are exposed to gluten. It sounds like you need to reduce the risk of being glutened by cc. Perhaps consider making the house gluten-free for simplicity.  Technically the rest of the family doesn't need to eat gluten, it just makes a nice texture in baked goods.  Maybe they can restrict their gluten to outside of the house so you can stay healthy and safe with greater ease?

My house is gluten-free, and it REALLY simplifies things for me.

If you keep a mixed house, you will have to be strict. Condiments, jams, butters, peanut butters and maybe even syrups ca not be shared. Shared toasters are a no-no too.  Consider cleaning things before you use them to prepare food even if they were supposedly put away clean.

Off topic but, you will need to get your boys checked for celiac, and rechecked every two years for the rest of their lives.  They could have a 1 in 10 chance of developing celiac disease, and it could show up at any time in their life.  :(

I hope you feel better soon.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Thanks for the replies. I don't eat bread of any kind (bagels, bread etc) i can't stand the smell texture. its been a good 10 years since i have toast, bread etc. I do have several shelves that are gluten free. I have my own dishes, pans, silverware, mixing bowls, mixer etc . i only use paper towels to clean counters off and to dry my hands off. I am a bit weird on germs and hand towels are so nasty to use. i also have my own condiments. but don't really eat anything that is like that. I don't eat peanut butter (my angel baby is peanut allergic), mayo, ketchup, mustard, jellies etc. i do use butter and have my own. i also don't use the toaster (no need for it) or a toaster oven (again no use for it). we are slowlty moving everyone to gluten-free. I'm not that concerned with the whole house being gluten-free though. I also have my own set of dishes, and cooking utensils, measuring cups/ spoons. I only drink diet pepsi, so i don't have gluten-free cups or mugs. i was mostly just venting what a pain in the butt it is. I'm use to it now i guess. i only eat a limited number of things even b/4 i got celiac. I have alot of germ and fodd issues lol. I did check out the advice you guys mention. 

thanks for letting me vent.

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Perhaps consider making the house gluten-free for simplicity. 

I was thinking this myself while reading the post.


Diagnosed with Celiac in 2010. Diagnosed with sleep apnea 2018.

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Kim01, what a wonderful thing you are doing by giving all your love and attention to those beautiful, deserving children.  It's a fantastic thing.  I would argue that you also are beautiful and deserving of your love and attention.  There is enough to go around.  It multiplies.  You mention a "we" in your household.  The other half of your "we" needs to help you establish and maintain a gluten free household.  Your body is screaming for this. It is not typical for a Celiac to need to be hospitalized.  You situation won't get any better until you change some of your behaviors.  Time will probably not fix your problems.  Start by trying to love yourself as much as you love all those children.  You deserve it.

Aside from the gluten cross-contamination issue, a red flag for me is that you said, "I only drink Diet Pepsi."  Does this really mean you drink 8 cans of Diet Pepsi per day?!?!  All that caffeine, carbonation, and fake sugar isn't good for anybody's digestion.  Even though they recently took out the aspartame, they replaced it with two other chemicals.

I know how you may feel about the Diet Pepsi.  When I was 18, I was "addicted" to Pepsi.  I loved that stuff.  It's about the only thing I drank.  It is possible to establish new, more healthful habits.  It's possible to drink only water--that underrated stuff that is free and conveniently comes out of our taps.  I did it.  You can make it more "special" with fruit (lime, orange, strawberry,or any other).  I use lemon for taste and also to increase the acidity in my stomach.  (No history of ulcers.)  You can get carbonated water or various bottles waters if you'd like something more "special".

Please, we just want you to take better care of yourself.  (Maybe you can have the Diet Pepsi in moderation--after you get your situation under control.)  No more hospitals!  

You would make these changes if it were for one of your children...

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I would also add regarding the Diet Pepsi..... even though that's "diet" Pepsi; isn't that still bad for diabetics?


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Yes i do only drink diet pepsi. i would say closer to 11 or 12 cans aday. give or take from one day to the next. water is gross. i've been doing this since i left the house at 18. not the best but it works. i really am not too concerned with everyone being gluten free. like i said i only eat a handful of foods that need to be cooked. don't really like any kind of baked good, crackers, bread. i do eat white rice (brown is gross) and bake potatos. i have my own butter and gluten-free soy sauce. i am just not a big food person. thanks for all the advice. hubby is huge in helping me, and would do anything i needed (if he knew i wanted it to happen) i'm a bit spoiled and get everything i want. he supports and encourages where he needs to. 

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Hi Kim01,

it is so great that you have opened your home to these children! 

I just wanted to also comment on Diet Pepsi. It is up to you whether you continue drinking it or not but I really think you might want to try to limit your Diet Pepsi intake to 1-2 cans. I have to admit that I used to love diet pepsi and drank 3-4 cans a day and sometimes more when I worked late. That combined with some processed food that I though was healthy was probably not good for me. I stopped drinking soda when I began gluten free diet. Occasionally I miss it but I do not allow myself to think about it. You can be creative when making lemonade, smoothies, fresh juice if you do not like water. Since you said that you drink 11-12 cans, that is between 3,6-3,9 liters (or close to a gallon, if I converted it correctly). We are supposed to drink 1,5 liters of water daily (I am not always good at that but I try to remember). So, while you are drinking enough fluids, even more than required, it is a sugary drink. 

I was hospitalized for dehydration prior to my celiac diagnosis and had to receive intravenous fluids. Doctors told me that I also had to drink at least 2l of water at that time and although I also did not care much for water, I  made myself drink it. We all make our own decisions so it is up to you to decide whether you continue to drink Diet Pepsi so much, but I think it would be better for your health to drink less. Have your doctors said anything about drinking diet pepsi? I hope you feel better soon. 

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There are folks that will have nasty reactions to large, or at times very small (case for me) artificial sweeteners.  They can also be quite addictive. It would be a really good idea to cut down your intake, or ideally stop the diet soda altogether. It could be contributing to your need for hospitalizations. Or even be the root cause for them.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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KIm01, in your above post you state, "not the best but it works" in reference to the Diet Pepsi.  But in your first post, you describe your body as repeatedly screaming that it does NOT work.  The things you are doing are NOT working.  

You won't get a different result until you try different choices.

Also, in your posts, you keep thanking us "for letting you vent".  But you are not ranting; you are simply describing what is happening with your health.  You have every right to talk about your health issues, even though some people in your life might not want to listen.  We will listen.

I would suggest that you might treat yourself as well as you treat others.  (I have had a very hard time learning to do this myself.  I consistently treat everyone else better than I treat myself.  My husband frequently has to remind me to treat myself better.  Even though I'm old,  I still have a lot of trouble with this.)  You are not alone; and you don't have to "hate this disease it sucks" (as you say in your first post).  Energy put into hating won't help you get better.

Sorry to be so critical; but you don't need any more "yes" people.  I'm worried about your health.

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Two comments that may help.  I am a refractory-sprue patient (Celiac to the extreme) in remission, so the gluten-free diet is finally working for me now.  The damage to my villi, however, has created some additional problems that have to be carefully managed.  Artificial sweetners (any of them) and lactose in even small amounts creates an almost instant and constant diarreah.  Lactose tablets help but must be taken with the first bite of food.  Personally, I think going lactose-free is even more difficult than the gluten-free diet.  Think: lactose is an integral part of milk, butter (even many butter-substitutes have a dairy component), cheese (including cream cheese, cottage cheese, almost all sliced or blocks of cheeses), many salad dressings, and yogurt,  When you check the ingredient list of almost any prepared food, it will have one or more of those lactose ingredients.  There are lactose free products: Lactaid milk, Lactaid cottage cheese, etc., Challenge lactose-free butter (real butter), imitation lactose-free spreads, and cheeses that are specifically labeled lactose-free or that show a "lactose 0%" on the ingredient list.  

Certain foods also refuse to be digested correctly and the diarreah returns -- chocolate, always -- green leafy vegetables (salad, broccoli) sometimes, if I eat a large helping.

Celiac is a very inconvenient and frustrating disease and controlling it takes a lot of effort.  I, too, lost 35+ lbs to a low of 89 lbs before a diagnosis.  The wonderful Celiac clinic in Boston saved my life, but couldn't eliminate the need for a strict gluten-free diet ... with the lactose-free complications thrown in as one of the burdens of being Celiac.

Good luck!  I hope this note will help you and others who are experiencing a similar problem.     

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