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Feeling Discouraged

Marie1976

By Marie1976
in Coping with Celiac Disease

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Marie1976 Enthusiast
Marie1976
Posted

Hi I haven't posted in a while, I guess I just need to vent. I'm so depressed because I keep getting sick. It's been about a year that I've been gluten free. I'm really careful, and I was doing pretty good for a while, but lately I've been getting sick every couple weeks. Maybe I'm getting even more sensitive to cc? Or am I even getting glutened at all? Maybe it's something else? I'm so sick of always racking my brain to figure out if/how I've been glutened.

The rest of my family had food with gluten last night but I made myself a separate dinner. I did clean up afterwards, but I washed my hands when I was done. Normally I cook everyone a gluten free meal, but sometimes they have gluten. Am I supposed to just make my husband and kids be gluten free? That doesn't seem fair to them. (Hubby is careful when he eats something with gluten, but my kids are little so it's hard to get them to not be messy and remember to wash their hands or not kiss me after eating noodles.)

I always wonder if maybe I'm ill because of something else and not cc. Does everyone go through this craziness of trying to figure out why you're sick? I woke up at 4 a.m. nauseous and burping and then I started vomiting and also had D. My mom took a day off work to come help me with the kids so I could rest. I feel like a burden on everyone, and I hate it.

A couple weeks ago I woke up at 1 a.m. with the worst dizziness and nausea. It went on for hours. I ended up at urgent care and they said I had vertigo. Is it from gluten? Is it a migraine? Doc said no and no. What is happening to me?? I'm not eating any gluten! I have been exercising and trying to get healthy. I used to feel good after exercising and now I feel like crap. I am trying so hard to feel like a normal person, but every time I make any progress I get sick and have to start all over. So discouraged. :(

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Metoo Enthusiast
Metoo
Posted

Hi I haven't posted in a while, I guess I just need to vent. I'm so depressed because I keep getting sick. It's been about a year that I've been gluten free. I'm really careful, and I was doing pretty good for a while, but lately I've been getting sick every couple weeks. Maybe I'm getting even more sensitive to cc? Or am I even getting glutened at all? Maybe it's something else? I'm so sick of always racking my brain to figure out if/how I've been glutened.

The rest of my family had food with gluten last night but I made myself a separate dinner. I did clean up afterwards, but I washed my hands when I was done. Normally I cook everyone a gluten free meal, but sometimes they have gluten. Am I supposed to just make my husband and kids be gluten free? That doesn't seem fair to them. (Hubby is careful when he eats something with gluten, but my kids are little so it's hard to get them to not be messy and remember to wash their hands or not kiss me after eating noodles.)

I always wonder if maybe I'm ill because of something else and not cc. Does everyone go through this craziness of trying to figure out why you're sick? I woke up at 4 a.m. nauseous and burping and then I started vomiting and also had D. My mom took a day off work to come help me with the kids so I could rest. I feel like a burden on everyone, and I hate it.

A couple weeks ago I woke up at 1 a.m. with the worst dizziness and nausea. It went on for hours. I ended up at urgent care and they said I had vertigo. Is it from gluten? Is it a migraine? Doc said no and no. What is happening to me?? I'm not eating any gluten! I have been exercising and trying to get healthy. I used to feel good after exercising and now I feel like crap. I am trying so hard to feel like a normal person, but every time I make any progress I get sick and have to start all over. So discouraged. :(

first, how are your vitamin levels? Have you had them checked recently? Some of your symptoms could definitly be from a vitamin deficiency, including vertigo, nausea, lack of energy, not feeling normal during exercise (understanding that exersize does hurt, and doesn't feel great all the time =) ).

I had a severe vitamin D deficiency, and besides not being able to excersize like I used to (I could not improve and I felt like I was dragging myself)...I was extremely fatiqued, a friend of mine was nauseated and puking for 2 months before her doctors figured out she had a level of 12..the bottom of their testing range!

I asked some of these questions myself a couple of weeks ago, I am about 6 months gluten free, and I definitly think I am getting more sensative, my last glutening was from an extremely minor amount, and I believe I got CC after that. I am having to be much more careful.

I like you, do make some gluten meals for my family. The majority are gluten free, I feel its healthier for my kids since they could have celiac, and not know it. However some things I just don't feel like depriving them of, or its just so much cheaper, or we just happen to have it. My last CC I think was from making my kids cookies for their school treat...somehow I messed up but I did make 4 dozen cookies too, but I didn't eat at all or after making them! ugh. My symtpoms are primarily skin, so it just lingers and hurts for weeks after something so minor, its very frustrating.

Takala Enthusiast
Takala
Posted

You may be one of the more sensitive types that are prone to cross contamination. My husband volunteered to go gluten free at home after seeing me laid out one too many times from accidental glutenings. He also cooks, and it was just too complicated for him to keep the ingredients memorized and segregated. The only major change over was he switched to eating gluten free cereals, and if he wants a quick carb snack, like peanut butter & jelly or cream cheese, he now goes for a base of a corn tortilla, a rice cake, or something gluten free that was baked at home by me. We already subbed rice pasta for the wheat,, and use gluten-free pizza bases. If he needs "flour" breading he can chose from one of the several gluten-free flour mixes I have on hand (I don't expect him to custom mix.... that's too complicated ;) ).

We eat a lot of vegetables, salads, and fruits anyway, so this was not that much of a Major Big Deal. Using more rice, beans, and potatoes for starches is no big deal. There are rice cookers and crock pots for cooking in quantity, and a lot of acceptable gluten-free "breads" can now be purchased or frozen, or made in a bread machine.

I have watched him in the kitchen, and honest to God, most men (and probably most children) have No Earthly Clue as to what the heck they are doing re: potential cross contamination, and they will redip a spoon over and over again into the original container, after rubbing it on the bread, use the same spoon or spatula for different items, :blink: or they will explode something in the microwave, and then neglect to clean it up. My favorite OMG :ph34r: is the lack of wiping up the stove top area afterwards. I have this automatic reflex action in the morning, of just taking a paper towel and some cider vinegar water in a spray bottle, and doing it. And they cannot remember at all what you told them about "Brand X" now being made on shared lines, and they may come home with more of it, more than once.

The neurological form of the auto immune reaction actually attacks your brain, so dizziness and a migraine can be the first symptom for some of us. One of my main problems has been doing baking with one or more ingredients which was not safe, especially if the manufacturer changed how they run the packaging lines or is sloppy and not testing, if you've made a big batch of something, ferreting out the problem is exasperating.

You may have to keep a food diary of every thing that you are eating, to catch this culprit.

jrfosterjr Newbie
jrfosterjr
Posted

Hi I haven't posted in a while, I guess I just need to vent. I'm so depressed because I keep getting sick. It's been about a year that I've been gluten free. I'm really careful, and I was doing pretty good for a while, but lately I've been getting sick every couple weeks. Maybe I'm getting even more sensitive to cc? Or am I even getting glutened at all? Maybe it's something else? I'm so sick of always racking my brain to figure out if/how I've been glutened.

The rest of my family had food with gluten last night but I made myself a separate dinner. I did clean up afterwards, but I washed my hands when I was done. Normally I cook everyone a gluten free meal, but sometimes they have gluten. Am I supposed to just make my husband and kids be gluten free? That doesn't seem fair to them. (Hubby is careful when he eats something with gluten, but my kids are little so it's hard to get them to not be messy and remember to wash their hands or not kiss me after eating noodles.)

I always wonder if maybe I'm ill because of something else and not cc. Does everyone go through this craziness of trying to figure out why you're sick? I woke up at 4 a.m. nauseous and burping and then I started vomiting and also had D. My mom took a day off work to come help me with the kids so I could rest. I feel like a burden on everyone, and I hate it.

A couple weeks ago I woke up at 1 a.m. with the worst dizziness and nausea. It went on for hours. I ended up at urgent care and they said I had vertigo. Is it from gluten? Is it a migraine? Doc said no and no. What is happening to me?? I'm not eating any gluten! I have been exercising and trying to get healthy. I used to feel good after exercising and now I feel like crap. I am trying so hard to feel like a normal person, but every time I make any progress I get sick and have to start all over. So discouraged. :(

Hello Marie,

I am not gluten-free, but my family is due to Celiac's Disease. My wife almost died from it in 2006, but has been strictly gluten-free ever since. She went through a period of time just like you describe. It was bad enough for the next year or so, I had to come home, change clothes in the wash room, put my clothes in the wash, wash my face and hands, then go in the house. You have to be very aggressive about your food sources, and honestly, your food preparation devices need to be gluten-free too. I do not in anyway benefit from mentioning this, but I highly recommend a subscription to Open Original Shared Link We use it and it has helped us tremendously. I have a segregated area for non-gluten-free items in the kitchen, but I do not cook anything that is not gluten-free. Before I open anything, I spread out paper towels and clean thoroughly behind myself in one small dedicated area on a easy-to-clean flat surface. It only takes a molecule in most cases to cause those kinds of reactions, so if you are cooking a gluten meal in the oven, you will have CC issues without a doubt. We had to completely replace our stoneware, toaster oven, oven, pots with rivets and screws, cutting boards, you name it, just to eliminate the CC issue. Good rule of thumb, no gluten dishes that require cooking or anything other than glass dishes for storage.

I'm sure my wife could give you some beneficial ideas from her personal experience and would be glad to be of help. We know exactly how discouraging it can be, very much so.

Thanks,

Jeff

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I'm getting neurological responses to gluten now. On March 20 I cleaned the cupboard that we used to store the wheat flour in. I breathed in a bit of the dust and it got me. I'm still suffering the effects! If you get enough exposure, the neurological symptoms can become permanent. I find it SO scary I won't handle or be around anything with gluten.

There's no way I could bake gluten items in my house. :blink:

My son and hubby eat microwavable items with gluten. I had to get a separate microwave. Every time I'd open the old one and go to "nuke" something, I'd see crud in there from their foods. That's enough to cc me. I wear rubber gloves when handling their dishes too.

Don't take cc lightly!

Marie1976 Enthusiast
Marie1976
Posted
  • Author

Thanks everybody, it feels good to know I'm not alone. And I needed to hear all the reminders of what I should be doing. I'm so thankful for this forum and for the support I always find here. :)

gf4years Newbie
gf4years
Posted

I went through something similar. My stomach was in knots all the time no matter what. I did have to check things more closely and guess what. A protein bar that I was using, the sales rep said it was gluten-free and it wasn't, and also my vitamins weren't. I can say years later I am feeling much better. Hang in there.

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GFinDC Veteran
GFinDC
Posted

Hello Marie,

I am not gluten-free, but my family is due to Celiac's Disease. My wife almost died from it in 2006, but has been strictly gluten-free ever since. She went through a period of time just like you describe. It was bad enough for the next year or so, I had to come home, change clothes in the wash room, put my clothes in the wash, wash my face and hands, then go in the house. You have to be very aggressive about your food sources, and honestly, your food preparation devices need to be gluten-free too. I do not in anyway benefit from mentioning this, but I highly recommend a subscription to Open Original Shared Link We use it and it has helped us tremendously. I have a segregated area for non-gluten-free items in the kitchen, but I do not cook anything that is not gluten-free. Before I open anything, I spread out paper towels and clean thoroughly behind myself in one small dedicated area on a easy-to-clean flat surface. It only takes a molecule in most cases to cause those kinds of reactions, so if you are cooking a gluten meal in the oven, you will have CC issues without a doubt. We had to completely replace our stoneware, toaster oven, oven, pots with rivets and screws, cutting boards, you name it, just to eliminate the CC issue. Good rule of thumb, no gluten dishes that require cooking or anything other than glass dishes for storage.

I'm sure my wife could give you some beneficial ideas from her personal experience and would be glad to be of help. We know exactly how discouraging it can be, very much so.

Thanks,

Jeff

Welcome to the site Jeff! I am sorry your wife is so sensitive. Hopefully she will get better in time. For me I was very sensitive until I eliminated some additional food intolerances that I developed. I seemed to react to most anything. But things have settled down a lot since then. I think when our GI system is reacting to anything on an ongoing basis it is very sensitive to any irritants. For me eliminating grapes, alcohol, and herbal teas made a positive difference

@Marie, Hi, I hope you feel better soon. Keep looking for other intolerances and eliminating things. Adding back one at a time after a few weeks rest. Little changes can mean a lot. :)

MitziG Enthusiast
MitziG
Posted

I'm sorry. I feel for you. My 13 yo has the same issue at a year gluten free. We have a gluten-free house because 3 of us are celiac, but every couple weeks, she is sick and puking. I have been racking my brains trying to keep her well, and she is scared to even eat because so many "safe" thing, for her, just aren't. I wish I had answers for you!

dws Contributor
dws
Posted

Hi I haven't posted in a while, I guess I just need to vent. I'm so depressed because I keep getting sick. It's been about a year that I've been gluten free. I'm really careful, and I was doing pretty good for a while, but lately I've been getting sick every couple weeks. Maybe I'm getting even more sensitive to cc? Or am I even getting glutened at all? Maybe it's something else? I'm so sick of always racking my brain to figure out if/how I've been glutened.

The rest of my family had food with gluten last night but I made myself a separate dinner. I did clean up afterwards, but I washed my hands when I was done. Normally I cook everyone a gluten free meal, but sometimes they have gluten. Am I supposed to just make my husband and kids be gluten free? That doesn't seem fair to them. (Hubby is careful when he eats something with gluten, but my kids are little so it's hard to get them to not be messy and remember to wash their hands or not kiss me after eating noodles.)

I always wonder if maybe I'm ill because of something else and not cc. Does everyone go through this craziness of trying to figure out why you're sick? I woke up at 4 a.m. nauseous and burping and then I started vomiting and also had D. My mom took a day off work to come help me with the kids so I could rest. I feel like a burden on everyone, and I hate it.

A couple weeks ago I woke up at 1 a.m. with the worst dizziness and nausea. It went on for hours. I ended up at urgent care and they said I had vertigo. Is it from gluten? Is it a migraine? Doc said no and no. What is happening to me?? I'm not eating any gluten! I have been exercising and trying to get healthy. I used to feel good after exercising and now I feel like crap. I am trying so hard to feel like a normal person, but every time I make any progress I get sick and have to start all over. So discouraged. :(

It is very frustating sometimes trying to figure out what is getting you. And you can get a lot more sensitive over time. I'm not sure it happens to everyone, but it sure happened to me. Someone must be eating all those processed gluten free products out there, but I have to stick with whole foods. I'm going through what seems to be my third uptick in sensitivity and am pulling my hair out trying to figure out what's bothering me. I've made gains before so I have to believe I'll get it eventually. Good luck and I hope you feel better soon. Believe in yourself and your ability to get it figured out, but have patience with yourself also. This isn't easy.

leivasfamily Newbie
leivasfamily
Posted

My daughter and our entire household has gone gluten free, with a few exceptions, but have designated counter for gluten items. I finally had her checked for other allergies that cross react with gluten, and sure enough she was allergic to almost all of them. We recently cut those foods out and it's been 2 weeks, so we hope she starts getting better.

She has celiac and her she shows it in edema due to her low albumin that has landed her in the hospital 3 times already. Do you also get affected in similar way? I would imagine most of you get affected with lower/low albumin, no? She vitamin levels are all fine, but she gets iron infusions every 3 weeks or so and b12 shots.

It will be interesting to hear from any of you if you have similar symptoms. I'm scared to check for other allergies, because honestly I don't know what else is left for her to eat. We are trying to follow the gaps diet....grain free, dairy free, egg free, sugar free, and gluten free in her case.

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