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xopinkpetals

Trouble Coping with Celiac and Eating gluten-free

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Hello, I am new to this forum, but not new to celiac disease.  I've had celiac my entire life, but I just found out I had it about 9 months ago.  I've had symptoms my entire life.  My husband and 2 children eat gluten, so there's lots of accidental glutening going on as much as I try to prevent it, and they refuse to go gluten-free.  I don't want to get into an argument with anyone on here about that, this is a personal family choice, so let's leave this at that.  I'm extremely sensitive to gluten.  One tiny breadcrumb will give me a bad rash and fever among other things (I have lots of symptoms when it comes to gluten).  My biggest problem is my stomach, I'm constantly having stomach pain/problems even though I eat gluten-free/gluten-free foods.  I suffer daily from celiac pain even though I eat gluten-free and it makes me depressed.  I've been eating gluten-free for 9 months now and I thought I would be done with this now.  I eat a lot of foods like soups and pastas and sometimes breads that are considered gluten-free (I always go for certified if I can find it) but I eat other things like chicken and veggies and fruits too.  I guess I thought my symptoms would be gone by now.  I've had bad reactions to gluten-free foods before and even my small intestine has hurt and I've had black diarrhea from eating said food so I'm always super careful.  I'm just having a really hard time coping with all of this.  My entire life it was never this bad.  About 4 years ago I got really sick and I started throwing up blood and I gained 10lbs from bloating and I looked like I was pregnant.  After that I just kept losing weight until I got down to 96lbs.  Once I started eating gluten-free I gained a lot of weight and now I'm back to a normal weight.  I guess my main problem here is I'm depressed a lot of the time because I'm in pain so much still even though I'm eating gluten-free and I don't understand why.  I'm also depressed that the things I can eat is so tiny.  I live in Hawai'i and the options here suck.  Idk if it's better elsewhere but I feel like everything I loved to eat is gone and all I'm left with is just food that tastes bad and I'm having a really hard time getting over that.  It's even harder watching my husband and 2 kids eat delicious things that I can't even eat and it hurts me that I can't eat it too.  Idk how to get over that, or if I will ever get over that.  I would never, ever eat gluten, I'm way too scared to because when I was eating it I was super super sick, plus I know it causes damage to my small intestine so that's just not something I want to do.  I guess I'm just having a hard time coping.  Idk if I just need more time to get used to eating gluten-free or if it's something else I need help with.  Any advice on how to cope would be much appreciated.

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6 hours ago, xopinkpetals said:

My husband and 2 children eat gluten, so there's lots of accidental glutening going on as much as I try to prevent it, and they refuse to go gluten-free.  I don't want to get into an argument with anyone on here about that, this is a personal family choice, so let's leave this at that.  I'm extremely sensitive to gluten.  One tiny breadcrumb will give me a bad rash and fever among other things (I have lots of symptoms when it comes to gluten). 

The answer to your problem is super simple. You are not now nor have you been gluten free.  It's the personal family choice and you don't want to argue about that. So what are you asking for? Validation?

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I don't know that I have a lot to offer, but wanted to address the shared household.   I have successfully shared with gluten eaters for 9 or 10 years now.   It is very possibly but precautions have to be taken. Have you read the newbie101 section it will give you a lot of good advice.   Do you have your own separate condiments (I have bright tape on mine with MOM written on it) how about a separate toaster?   I also have a separate pasta strainer and the pasta cooking fork.     I would also consider myself a picky eater so I have learned for me I only like things that are already made gluten free, not a new recipe to make it gluten free.   So I found recipes for things that never had flour.   Peanut butter cookies, or oatmeal, I prefer to eat a junkie fruity pebbles cereal if I needed cereal instead of a knock off that was altered to be gluten free.   But because of my pickiness I didn't like gluten free pasta (will eat some now) so I use bean thread rice noodles or rice whenever I can.   I did find a bread I love but I still like to wrap most of my "sandwiches" in lettuce instead.    

 

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As mentioned read the newbie 101 section...is that pasta cooked in the same pot as normal pasta with teh same colander? Then it is not gluten free. Do you use the same condiment jars and redip the knife in it....CCed. Do you use the same cooking ware like spatulas that can get gluten in the handle/rubber connection, wooden spoons, scratched pans, etc.....If you use flour in the house...your just CCed the whole kitchen, flour can stay air born for hours...see that poof when you opened the bag and use it....yep  it floats and settles everywhere, and if you inhale it, it gets stuck in the mucus in your nose and throat then runs down into your stomach and your glutened.....Living in a shared house is doable but certain things have to be done like no flour, dedicated cooking ware, dedicated toasters etc. Big helps are using freezer paper as a clean prep surface, gloves, foil lining baking dishes, crock pot liners, and noridicware microwave cook ware is a life saver. Got some links to read over....due to your location it really does sort of screw over the whole "just change to gluten free brand" concept I tell people....now days there is gluten free everything if you can shop for them....

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/121148-gluten-free-food-alternative-list-2018-q2/

You guys might just have to do a whole house, whole foods diet, and go to baked and grilled/baked meats, veggies, potatoes, and rice for a month. Call it a family wellness month and give it a try, sheet pan meals of meats and veggies, crock pot meals, look them up and do them with foil lined pans and crock pot liners...remove processed foods, breads, flours it might do the whole family well and ease the burden. Naturally gluten free.

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6 hours ago, xopinkpetals said:

Hello, I am new to this forum, but not new to celiac disease.  I've had celiac my entire life, but I just found out I had it about 9 months ago.  I've had symptoms my entire life.  My husband and 2 children eat gluten, so there's lots of accidental glutening going on as much as I try to prevent it, and they refuse to go gluten-free.  I don't want to get into an argument with anyone on here about that, this is a personal family choice, so let's leave this at that.  I'm extremely sensitive to gluten.  One tiny breadcrumb will give me a bad rash and fever among other things (I have lots of symptoms when it comes to gluten).  My biggest problem is my stomach, I'm constantly having stomach pain/problems even though I eat gluten-free/gluten-free foods.  I suffer daily from celiac pain even though I eat gluten-free and it makes me depressed.  I've been eating gluten-free for 9 months now and I thought I would be done with this now.  I eat a lot of foods like soups and pastas and sometimes breads that are considered gluten-free (I always go for certified if I can find it) but I eat other things like chicken and veggies and fruits too.  I guess I thought my symptoms would be gone by now.  I've had bad reactions to gluten-free foods before and even my small intestine has hurt and I've had black diarrhea from eating said food so I'm always super careful.  I'm just having a really hard time coping with all of this.  My entire life it was never this bad.  About 4 years ago I got really sick and I started throwing up blood and I gained 10lbs from bloating and I looked like I was pregnant.  After that I just kept losing weight until I got down to 96lbs.  Once I started eating gluten-free I gained a lot of weight and now I'm back to a normal weight.  I guess my main problem here is I'm depressed a lot of the time because I'm in pain so much still even though I'm eating gluten-free and I don't understand why.  I'm also depressed that the things I can eat is so tiny.  I live in Hawai'i and the options here suck.  Idk if it's better elsewhere but I feel like everything I loved to eat is gone and all I'm left with is just food that tastes bad and I'm having a really hard time getting over that.  It's even harder watching my husband and 2 kids eat delicious things that I can't even eat and it hurts me that I can't eat it too.  Idk how to get over that, or if I will ever get over that.  I would never, ever eat gluten, I'm way too scared to because when I was eating it I was super super sick, plus I know it causes damage to my small intestine so that's just not something I want to do.  I guess I'm just having a hard time coping.  Idk if I just need more time to get used to eating gluten-free or if it's something else I need help with.  Any advice on how to cope would be much appreciated.

I have a shared household.  But my kids and husband are willing to be extra careful, follow procedures to keep their gluten from hurting me, and, in the beginning, they didn’t flaunt food in front of me that I missed.  So, it is possible to have a shared household..... but only if the gluten eaters are willing to be more than cateful.  

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Posted (edited)
15 hours ago, xopinkpetals said:

Hello, I am new to this forum, but not new to celiac disease.  I've had celiac my entire life, but I just found out I had it about 9 months ago.  I've had symptoms my entire life.  My husband and 2 children eat gluten, so there's lots of accidental glutening going on as much as I try to prevent it, and they refuse to go gluten-free.  I don't want to get into an argument with anyone on here about that, this is a personal family choice, so let's leave this at that.  I'm extremely sensitive to gluten.  One tiny breadcrumb will give me a bad rash and fever among other things (I have lots of symptoms when it comes to gluten).  My biggest problem is my stomach, I'm constantly having stomach pain/problems even though I eat gluten-free/gluten-free foods.  I suffer daily from celiac pain even though I eat gluten-free and it makes me depressed.  I've been eating gluten-free for 9 months now and I thought I would be done with this now.  I eat a lot of foods like soups and pastas and sometimes breads that are considered gluten-free (I always go for certified if I can find it) but I eat other things like chicken and veggies and fruits too.  I guess I thought my symptoms would be gone by now.  I've had bad reactions to gluten-free foods before and even my small intestine has hurt and I've had black diarrhea from eating said food so I'm always super careful.  I'm just having a really hard time coping with all of this.  My entire life it was never this bad.  About 4 years ago I got really sick and I started throwing up blood and I gained 10lbs from bloating and I looked like I was pregnant.  After that I just kept losing weight until I got down to 96lbs.  Once I started eating gluten-free I gained a lot of weight and now I'm back to a normal weight.  I guess my main problem here is I'm depressed a lot of the time because I'm in pain so much still even though I'm eating gluten-free and I don't understand why.  I'm also depressed that the things I can eat is so tiny.  I live in Hawai'i and the options here suck.  Idk if it's better elsewhere but I feel like everything I loved to eat is gone and all I'm left with is just food that tastes bad and I'm having a really hard time getting over that.  It's even harder watching my husband and 2 kids eat delicious things that I can't even eat and it hurts me that I can't eat it too.  Idk how to get over that, or if I will ever get over that.  I would never, ever eat gluten, I'm way too scared to because when I was eating it I was super super sick, plus I know it causes damage to my small intestine so that's just not something I want to do.  I guess I'm just having a hard time coping.  Idk if I just need more time to get used to eating gluten-free or if it's something else I need help with.  Any advice on how to cope would be much appreciated.

Hi,

I had Celiac disease all my life(I am in my 30s now) as well and only last year November I found out.

I  start my Gluten-free diet about a month and few weeks now. Why? After being diagnosed with Celiac disease via GeneticTesting,  I wanted to have an endoscopy done and further blood work so I continue to suffer through all the symptoms until I could take it anymore and went gluten-free. 

I have had 2 Genetic Reports confirming that I had Celiac disease along with a  very long list of symptoms.

I don't like being gluten-free because the food isn't fun anymore and I can't eat out like I use to.

You have to be extremely careful about everything including your toothpaste!  It's a tough journey but I rather stick to this path than being constantly in pain and having devastating symptoms.

Most of my muscle and join pain has gone and my sense of smell is returning. I don't have any rashes and my skin stop itching. (It was crazy )

I read an article that was talking about some of the foods that say their are certify Gluten-free but have small amounts of gluten in them(20ppm)and I think that that could be your problem.

Also, you have to be careful of cross contamination and that can happen alot in the fields as well as in the facility! (Millet and  quinoa are high risk for cross contamination )

There is also the possibility that some of the foods that other gluten-free people eat and say it's safe because it doesn't affect them may not be good for you. Everyone'sbody is different! 

I can't eat corn, oates and basically no grains (rice included)

I  don't buy the gluten-free process foods that sell at the supermarket because they are a big risk.

I am also lactose intolerant so you see, food choices are very limited but you have to keep the faith.

Look in your area for gluten free bakeries and see if you can get delicious treats to buy.

I  found one a few days ago and I couldn't believe how good the cakes and muffins tasted.

I tried some of the flours but couldn't get my stuff to be tasty like theirs.

The lady that owns the bakery has celiac disease (diagnosed in 2008) and decided to start making her own products after she couldn't find tasty  gluten-free snacks.

Edited by gluten-free Survivor
Type-o

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9 minutes ago, gluten-free Survivor said:

Hi,

I had Celiac disease all my life(I am in my 30s now) as well and only last year November I found out.

I  start my Gluten-free diet about a month and few weeks now. Why? After being diagnosed with Celiac disease via GeneticTesting,  I wanted to have an endoscopy done and further blood work so I continue to suffer through all the symptoms until I could take it anymore and went gluten-free. 

I have had 2 Genetic Reports confirming that I had Celiac disease along with a  very long list of symptoms.

I don't like being gluten-free because the food isn't fun anymore and I can't eat out like I use to.

You have to be extremely careful about everything including your toothpaste!  It's a tough journey but I rather stick to this path than being constantly in pain and having devastating symptoms.

Most of my muscle and join pain has gone and my sense of smell is returning. I don't have any rashes and my skin stop itching. (It was crazy )

I read an article that was talking about some of the foods that say their are certify Gluten-free but have small amounts of gluten in them(20ppm)and I think that that could be your problem.

Also, you have to be careful of cross contamination and that can happen alot in the fields as well as in the facility! (Millet and  quinoa are high risk for cross contamination )

There is also the possibility that some of the foods that other gluten-free people eat and say it's safe because it doesn't affect them may not be good for you. Everyone'sbody is different! 

I can't eat corn, oates and basically no grains (rice included)

I  don't buy the gluten-free process foods that sell at the supermarket because they are a big risk.

I am also lactose intolerant so you see, food choices are very limited but you have to keep the faith.

Look in your also read for gluten free bakeries and see if you can get delicious treats to buy.

I  found one a few days ago and I couldn't believe how good the cakes and muffins tasted.

I tried some of the flours but couldn't get my stuff to be tasty like theirs.

The lady that owns the bakery has celiac disease (diagnosed in 2008) and decided to start making her own products after she couldn't find tasty  gluten-free snacks.

You can't be diagnosed with Celiac just through genetic tests.  About 30% of people have at least one gene that could lead them to develop Celiac.  But only about 1% of people actually develop Celiac.

https://www.cureceliacdisease.org/faq/if-i-have-a-gene-for-celiac-disease-does-that-i-mean-i-have-it/

 

"Genetics don’t diagnose celiac disease. They do, however, clarify whether an individual is “at-risk” for it. If this is the case, you should closely monitor your symptoms and submit to blood tests every 2-3 years or immediately upon the onset of symptoms. When the genetic predisposition for celiac disease was detected (on Chromosome 6) researchers noted that the genes were a necessary but not sufficient condition for the disease to develop. In fact, up to 1/3 of the U.S. population has the genes for celiac disease. Meaning, those who have the DQ2 or DQ8 gene can develop celiac disease at any time, but only about 5% of those people actually will. "

 

 

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21 minutes ago, kareng said:

You can't be diagnosed with Celiac just through genetic tests.  About 30% of people have at least one gene that could lead them to develop Celiac.  But only about 1% of people actually develop Celiac.

https://www.cureceliacdisease.org/faq/if-i-have-a-gene-for-celiac-disease-does-that-i-mean-i-have-it/

 

"Genetics don’t diagnose celiac disease. They do, however, clarify whether an individual is “at-risk” for it. If this is the case, you should closely monitor your symptoms and submit to blood tests every 2-3 years or immediately upon the onset of symptoms. When the genetic predisposition for celiac disease was detected (on Chromosome 6) researchers noted that the genes were a necessary but not sufficient condition for the disease to develop. In fact, up to 1/3 of the U.S. population has the genes for celiac disease. Meaning, those who have the DQ2 or DQ8 gene can develop celiac disease at any time, but only about 5% of those people actually will. "

 

 

Well I must be in thst 5% range group  because I have been having symptoms all of my life and even been misdiagnosed as having Sickle cell anemia!  Then when I  migrated here and did further testing,  no sickle cell. 

I did in depth research and listen various doctors on the matter.  It was said a genetic test can diagnose Celiac disease especially if you are symptomatic and there are 4 types of celiac disease  (No symptoms,  mild symptoms,  severe symptoms and I can't recall the other one)

I have spent alot of money behind doctors and I ain't doing that anymore. 

The only thing that I going to do is have a gastrointestinal doctor do an endoscopy a year from now to see how my small intestine villies are shaping up! 

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1 hour ago, gluten-free Survivor said:

Hi,

I had Celiac disease all my life(I am in my 30s now) as well and only last year November I found out.

I  start my Gluten-free diet about a month and few weeks now. Why? After being diagnosed with Celiac disease via GeneticTesting,  I wanted to have an endoscopy done and further blood work so I continue to suffer through all the symptoms until I could take it anymore and went gluten-free. 

I have had 2 Genetic Reports confirming that I had Celiac disease along with a  very long list of symptoms.

I don't like being gluten-free because the food isn't fun anymore and I can't eat out like I use to.

You have to be extremely careful about everything including your toothpaste!  It's a tough journey but I rather stick to this path than being constantly in pain and having devastating symptoms.

Most of my muscle and join pain has gone and my sense of smell is returning. I don't have any rashes and my skin stop itching. (It was crazy )

I read an article that was talking about some of the foods that say their are certify Gluten-free but have small amounts of gluten in them(20ppm)and I think that that could be your problem.

Also, you have to be careful of cross contamination and that can happen alot in the fields as well as in the facility! (Millet and  quinoa are high risk for cross contamination )

There is also the possibility that some of the foods that other gluten-free people eat and say it's safe because it doesn't affect them may not be good for you. Everyone'sbody is different! 

I can't eat corn, oates and basically no grains (rice included)

I  don't buy the gluten-free process foods that sell at the supermarket because they are a big risk.

I am also lactose intolerant so you see, food choices are very limited but you have to keep the faith.

Look in your area for gluten free bakeries and see if you can get delicious treats to buy.

I  found one a few days ago and I couldn't believe how good the cakes and muffins tasted.

I tried some of the flours but couldn't get my stuff to be tasty like theirs.

The lady that owns the bakery has celiac disease (diagnosed in 2008) and decided to start making her own products after she couldn't find tasty  gluten-free snacks.

....welcome to my world, celiac, lactose intolerant, whey allergy, corn allergy, most grains caused edema, ulcerative colitis flares to fructose/glucose and amusingly starches/complex also flare it to a lesser degree....so grain free, no starchy veggies, and no sugars or fruit.
Started my own gluten free bakery to make good tasting, moist baked goods....back then most were cardboard. I was inpsired by Julian Bakery grain free breads and now we offer grain free baked goods (THAT I CAN EAT) and paleo breads at my bakery, I still go to Mikeys grain free low carb english muffins, and Califlour foods pizza crust, and I eat Julian Bakery ProGranola (grain free sugar free granola) sometimes for treats.
Processed foods....I am adicted to vegan cheeses....and I snack on stuff like protes protein chips often...I also have pancreas issues, so no animal fats. And sometimes use a vegan meat sub.

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