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Still having problems after 4 years


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#1 Bell232

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Posted 17 April 2012 - 05:10 AM

Hi, My name is Dawn. I am a single mom with 4 kids and I have been gluten free for 4 years now and am still painfully sick. The sharp pains in my lower right abdomen have me doubled over from morning until night. I am bloated to the point where I look pregnant and have tried everything to feel better. I have had an MRI, CT, colonoscopy, numerous blood tests and have seen my Gastroenterologist more times than I would like to. They just tell me to go gluten free and I will feel better. I have done this for 4 years, and still feel way to much pain. When I lay on my back you can see my intestines moving like there is a baby kicking. It's the strangest thing I've ever seen. I am also a vegetarian and eat very little dairy. I make my own gluten free bread at home just to be sure. Can anyone help me to feel better? I have come to hate food and have also gained weight. Which is so strange since I don't eat very much. Any help out there? Thanks, Dawn
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#2 Bubba's Mom

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Posted 17 April 2012 - 06:51 AM

Hi, My name is Dawn. I am a single mom with 4 kids and I have been gluten free for 4 years now and am still painfully sick. The sharp pains in my lower right abdomen have me doubled over from morning until night. I am bloated to the point where I look pregnant and have tried everything to feel better. I have had an MRI, CT, colonoscopy, numerous blood tests and have seen my Gastroenterologist more times than I would like to. They just tell me to go gluten free and I will feel better. I have done this for 4 years, and still feel way to much pain. When I lay on my back you can see my intestines moving like there is a baby kicking. It's the strangest thing I've ever seen. I am also a vegetarian and eat very little dairy. I make my own gluten free bread at home just to be sure. Can anyone help me to feel better? I have come to hate food and have also gained weight. Which is so strange since I don't eat very much. Any help out there? Thanks, Dawn

You may have an additional food intolerance? It's something they can't really test you for. It's found by you keeping track of what you eat (a log) and any reactions you have. Many food reactions are a bit delayed so it will take some detective work.
By doing this you may see a pattern of symptoms start to emerge? Omit anything you're suspicious of for a bit, then try it again and see if you react.

I would suggest that you start by watching the main allergens? Many of us seem to react to soy and dairy especially..but it could be anything with you? MSG seems to give a lot of us trouble too. We are all different.

Good luck. I know it doesn't seem fair that we might have to give up another food..but if you can figutre out what's making you feel bad and eliminate it..it's worth it?
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#3 IrishHeart

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Posted 17 April 2012 - 07:09 AM

Sorry you still feel so bad. :(

You do not say, but is your HOME gluten free? Are you still serving gluten-filled foods to others?

Cross contamination and unsuspected/accidental gluten ingestion can cause lingering symptoms.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 Skylark

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Posted 17 April 2012 - 08:25 AM

Bad bloating is often a reaction to lactose or fructose. Since you're pretty low-dairy I'd suggest looking into a low-FODMAP diet. Fructose malabsorption can do what you're describing and it can be quite painful.

You also may want to start taking some Beanzyme when you eat legumes (it's a gluten-free vesrion of Beano available at http://www.beanzyme.com).
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#5 Austin GF Family

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Posted 17 April 2012 - 11:42 AM

My husband's experience was similar, in that after diagnosis and going gluten free to the extreme (we replaced all of our cookware, utensils and small appliances, the home and kitchen were rid of all glutens, any pre-packaged foods were prepared in a gluten free facility, he did not eat in any restaurants, all supplements and medications were clearly labeled gluten free, etc.) he felt better, but not completely well. After more than a year of him telling me that things like fresh corn that I was picking up at a local farm must be contaminated with gluten somehow, he had a comprehensive allergy panel, which included food and environmental allergens. It turned out that he had additional food allergies \ sensitivities that were preventing his gut from healing and also some environmental allergies (dogs, mold) and was reacting to them more severely because his immune and histamine systems were already aggravated and working overtime to combat the effects of all of this. Once he was able to eliminate the remaining food allergies from his diet and minimize his exposure to certain environmental allergens, he began to heal and feel much better.

Any allergist should be able to perform this test, which just requires one vial of blood and takes a couple of weeks for the results. If you aren't working with an allergist, places like Any Lab Test or RediClinic offer the test, as well. Your situation sounds pretty serious, so this may not solve the entire problem for you, but I would recommend having this test performed ASAP, if for no other reason than to rule out the possibility of other contaminants.

Also, look for possible sources of cross contamination in your own home or possible hidden gluten in what you are consuming. For example, some wineries use a flour-based "glue" to seal their barrels, as do some tea producers to seal their tea bags. Since this is packaging, it wouldn't be listed on the ingredient label. Your cosmetics and toiletries may also be a source of hidden gluten (lotions, lip balms, etc.), so don't forget to check them. And, you probably know that some meats (in particular poultry) are injected with broths, preserving agents and other things that may contain glutens or may be processed on a shared line with glutens, so check labels and contact producers for their allergen statements. If you are still handling glutens (I had a celiac friend who would sometimes make non-gluten-free cookies and other baked goods for her kids, but would get violently ill every time), you may be too sensitive to do so. And, the cookware, utensils, small appliances are another possible sources if you have not replaced them. This was probably the hardest part for us, as it's just so darn expensive to replace all of that stuff and you feel foolish getting rid of a perfectly good cutting board, pizza stone, wooden spoon, cast iron skillet, blender, cake pan, toaster and the like. But, this is a necessary step and can be done a little bit at a time.

I do hope you find some help and begin to feel better soon.
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#6 Bell232

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Posted 19 April 2012 - 03:17 PM

Sorry you still feel so bad. :(

You do not say, but is your HOME gluten free? Are you still serving gluten-filled foods to others?

Cross contamination and unsuspected/accidental gluten ingestion can cause lingering symptoms.

My home is not gluten free since there are 8 of us living here. I have my own toaster, make my own gluten free bread(which makes me sick), have my own utensils and pans, have my own peanut butter, etc...
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#7 IrishHeart

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Posted 19 April 2012 - 03:27 PM

While I know many celiacs live with WEs (wheat eaters) and manage to stay free of cross-contamination, I think it may be a large contributor to some people's inability to get well.

I am sure you do all you can to avoid it, and I am not saying it's why you still feel bad, but it may be a possibility.

I wish I could offer you more help. Since you have ruled out everything else through testing, it's hard to say what is going on.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 dilettantesteph

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Posted 20 April 2012 - 03:18 AM

make my own gluten free bread(which makes me sick)

If your gluten free bread makes you sick, stop eating it. That might help. Different celiacs have different levels of sensitivity. What one may be able to eat, another might not be able to eat. Grain products might not work for you.
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#9 IrishHeart

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Posted 20 April 2012 - 05:52 AM

If your gluten free bread makes you sick, stop eating it. That might help. Different celiacs have different levels of sensitivity. What one may be able to eat, another might not be able to eat. Grain products might not work for you.



Very true! Everybody is different.

After doing a plain diet, every form of elimination diet, no grains, some grains, failsafe diet, blah blah blah for 2 years, etc.....and still finding some things bother me ....I came up with this simple rule for myself:

If it makes me sick, I just don't eat it. I am not happy about it, because I really like some of those foods!! :(
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#10 Skylark

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Posted 20 April 2012 - 06:55 AM

My home is not gluten free since there are 8 of us living here. I have my own toaster, make my own gluten free bread(which makes me sick), have my own utensils and pans, have my own peanut butter, etc...

If you're fructose intolerant, brown rice flour may be making you sick.
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#11 tom

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Posted 20 April 2012 - 05:08 PM

I was unwell despite 3.5 yrs gluten-free, then found soy was causing most of it. But going soy-free for just a few days or a week didn't make it apparent. It took a 2 week trial. I was pretty pissed since I could've known years earlier, but those soy-free trials just weren't long enough.

Hope you find your answers.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#12 jizzzzie

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Posted 22 April 2012 - 08:15 AM

I can commiserate a bit. I don't' have it as bad as you, but doctors have still been pulling me from place to place, and I'm about to rip out my hair I think!
After going gluten free two years ago, I got a terrible sickness, which kind of sent me backward.s I lost 30 pounds, and had episodes of seemingly gluten reactions for the following months. I was sent to a dietician, and we learned I was intolerant to glucose, and fructose. I took this way to far, and when I was told I could have a small intolerance to soy, I basically consumed only water. But soon that faded away, and I gradually became better, but the following year, I would still have gi issues. Every day I would have to go to the bathroom way too much, and I would have stomach aches every day. Getting tugged halfway across the country to special doctors, they diagnosed me with small intestine bacterial overgrowth, which I was promptly put on antibiotics for. I was given another medicine for IBS, probiotics, and was taking a lot of loperamide as well. I was also lactose intolerant (and still am) which was our first go-to even before gluten. After stopping the antibiotics and probiotics because it seemed like too much, (and all the while on a difficult weight gain journey, 5000 calories a day and two gross protein drinks.. I'm a 14 year old girl, but at the time was 12 and 13, and I am VERY small. I'm still on this weight gain journey.) I was just taking IBS medicine for spastic colon, and loperamide. we stopped the IBS medicine though, because we ran out and I decided not to do it. So I was only doing loperamide. As the years go on, I seem to be getting slowly better than I was before, each year just a bit better. This has lead to tremendous anxiety though, (though I've always had some, as well as a terror of a phobia - emeteophobia) and food fears, which had lead to it's own type of eating disorder from which I'm trying to recover, since I eat a very limited selection and do not trust many things.
Doctors have told me this: If I can work on my anxiety, and other methods for controlling IBS, as well as take the IBS medicine, lower your loperamide intake, and expand your food then you will feel better. But for some reason this seems all to scary for me, and I have yet to do so.. I will. I tell myself that.
For you, I first think you should get an endoscopy done - after eating gluten for two weeks or so (this is what I did) to ultimately determine if you need to stay off gluten. It looks to seem if your villi have flattened down in your intestines, the tell-tale of celiac. If you truly have felt NO better, then this is a must.
IBS is also a contributor most times. http://www.helpforibs.com/ is a good site.
You may have other allergies or intolerances as well. Ask your doctor about allergy tests, and try going off things for a month or so - dairy, glucose, fructose, casein, etc.. I'm sure you can find a list somewhere. And perhaps get a dietician as well. They are *usually* very helpful.
Don't forget other more, for lack of a better word, severe problems such as leaky gut, and chron's, just to name a few. As I'm sure you already have, doing some research and bringing it up with a designated "GI" doctor could help tremendously. Though regular doctors can be really helpful in seeking things, my doctor through my whole life of having tummy aches and then through the years progressing into much worse things, never once thought of celiac and always lent it to anxiety. It was not until I went to a GI doctor that they brought it up. At first I was heartbroken, but learned it was the answer!

Such an annoyance all of this is so expensive.. All for a better quality life!
I know I'm only 14, so I may not be of much help, but I wish you luck!
Feel better, I know you will in time.
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~January 2010 diagnosed Celiac Disease
~IBS since.. forever!
~Anxiety, emeteophobia
~Lactose Intolerance
~ *in the past: fructose, glucose, soy intolerance.. Small intestinal bacterial overgrowth..*
~Recovery-major weight gain difficulty
~Food fears, previous eating disorder ^related to food fears, not body image^
Meow! :3

#13 Bell232

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Posted 25 May 2012 - 07:13 AM

If you're fructose intolerant, brown rice flour may be making you sick.

Not brown rice flour! I eat that daily. Maybe I will replace it with quinoa flour.
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#14 Bell232

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Posted 25 May 2012 - 07:15 AM

I was unwell despite 3.5 yrs gluten-free, then found soy was causing most of it. But going soy-free for just a few days or a week didn't make it apparent. It took a 2 week trial. I was pretty pissed since I could've known years earlier, but those soy-free trials just weren't long enough.

Hope you find your answers.

I haven't tried going off of soy. I will try that starting today. Thanks so much!
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#15 Bell232

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Posted 25 May 2012 - 07:18 AM

My husband's experience was similar, in that after diagnosis and going gluten free to the extreme (we replaced all of our cookware, utensils and small appliances, the home and kitchen were rid of all glutens, any pre-packaged foods were prepared in a gluten free facility, he did not eat in any restaurants, all supplements and medications were clearly labeled gluten free, etc.) he felt better, but not completely well. After more than a year of him telling me that things like fresh corn that I was picking up at a local farm must be contaminated with gluten somehow, he had a comprehensive allergy panel, which included food and environmental allergens. It turned out that he had additional food allergies \ sensitivities that were preventing his gut from healing and also some environmental allergies (dogs, mold) and was reacting to them more severely because his immune and histamine systems were already aggravated and working overtime to combat the effects of all of this. Once he was able to eliminate the remaining food allergies from his diet and minimize his exposure to certain environmental allergens, he began to heal and feel much better.

Any allergist should be able to perform this test, which just requires one vial of blood and takes a couple of weeks for the results. If you aren't working with an allergist, places like Any Lab Test or RediClinic offer the test, as well. Your situation sounds pretty serious, so this may not solve the entire problem for you, but I would recommend having this test performed ASAP, if for no other reason than to rule out the possibility of other contaminants.

Also, look for possible sources of cross contamination in your own home or possible hidden gluten in what you are consuming. For example, some wineries use a flour-based "glue" to seal their barrels, as do some tea producers to seal their tea bags. Since this is packaging, it wouldn't be listed on the ingredient label. Your cosmetics and toiletries may also be a source of hidden gluten (lotions, lip balms, etc.), so don't forget to check them. And, you probably know that some meats (in particular poultry) are injected with broths, preserving agents and other things that may contain glutens or may be processed on a shared line with glutens, so check labels and contact producers for their allergen statements. If you are still handling glutens (I had a celiac friend who would sometimes make non-gluten-free cookies and other baked goods for her kids, but would get violently ill every time), you may be too sensitive to do so. And, the cookware, utensils, small appliances are another possible sources if you have not replaced them. This was probably the hardest part for us, as it's just so darn expensive to replace all of that stuff and you feel foolish getting rid of a perfectly good cutting board, pizza stone, wooden spoon, cast iron skillet, blender, cake pan, toaster and the like. But, this is a necessary step and can be done a little bit at a time.

I do hope you find some help and begin to feel better soon.

I quit drinking any hard liquor and just stuck to wine or gluten free beer, but they still make me so sick too. Severe lower right gut pain. It's a bummer.
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