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Anxiety

sleer

By sleer
in Coping with Celiac Disease

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sleer Contributor
sleer
Posted

So, this all started in June of last year when I just wasn't feeling "right". I had this horrible lump in my throat that wouldn't go away (felt like mucus), I was having abdominal pain (which they DX as ovarian cysts and although there were cysts there the surgeries to remove never got rid of the pain), I would be constipated a lot (but I'd had that for as long as I can remember and had been diagnosed with IBS previously because it would alternate with D), I was getting lots of yeast infections, I was bloated, I gained weight for what seemed like no reason, I was tired more than usual, I craved bread and seriously felt like I could never get full. Then in January of this year I started really feeling bad. I still had a lump feeling in my throat, I was getting eye floaters, I had chills almost like I had a fever but didn't, my joints were aching, my abdominal pain came back and I was sleeping with a heating pad to help with that and the chills and I was so tired and I couldn't concentrate on anything (almost like I was in a cloud). I made an appointment with a Dr. but because I was a new patient I couldn't get in until March. So, I started trying my own remedies and researching. I tried prilosec in case I had silent acid reflux but that didn't seem to do anything. I tried all sorts of sinus medicine thinking it was an allergy or something. I tried "sleeping" it off. Nothing. Then my brother-in-law (who is a dietician) suggested maybe gluten. I was all for trying. I started feeling better. When I finally had my Dr. appointment she couldn't test because I had been on a gluten free diet and I just wasn't willing to go through all of the symptoms again for 3 months. But now I still get the symptoms time and again because of accidentally glutening (I mess up thinking something is gluten free that isn't or a restaurant gets a stray crouton in my salad that I don't notice) and it seems to take 3 weeks for my symptoms to leave me before I start to feel better again so even though I've had stretches of feeling great with the accidental glutening I keep hitting the lows again. Because of this I'm starting to wonder if it's gluten at all or if I have something else terribly wrong with me and I'm just able to blame the reoccurring symptoms on some accidental glutening since it's been happening about every other month....

I'm just frustrated and needed to vent I think.

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faithforlife Apprentice
faithforlife
Posted

So, this all started in June of last year when I just wasn't feeling "right". I had this horrible lump in my throat that wouldn't go away (felt like mucus), I was having abdominal pain (which they DX as ovarian cysts and although there were cysts there the surgeries to remove never got rid of the pain), I would be constipated a lot (but I'd had that for as long as I can remember and had been diagnosed with IBS previously because it would alternate with D), I was getting lots of yeast infections, I was bloated, I gained weight for what seemed like no reason, I was tired more than usual, I craved bread and seriously felt like I could never get full. Then in January of this year I started really feeling bad. I still had a lump feeling in my throat, I was getting eye floaters, I had chills almost like I had a fever but didn't, my joints were aching, my abdominal pain came back and I was sleeping with a heating pad to help with that and the chills and I was so tired and I couldn't concentrate on anything (almost like I was in a cloud). I made an appointment with a Dr. but because I was a new patient I couldn't get in until March. So, I started trying my own remedies and researching. I tried prilosec in case I had silent acid reflux but that didn't seem to do anything. I tried all sorts of sinus medicine thinking it was an allergy or something. I tried "sleeping" it off. Nothing. Then my brother-in-law (who is a dietician) suggested maybe gluten. I was all for trying. I started feeling better. When I finally had my Dr. appointment she couldn't test because I had been on a gluten free diet and I just wasn't willing to go through all of the symptoms again for 3 months. But now I still get the symptoms time and again because of accidentally glutening (I mess up thinking something is gluten free that isn't or a restaurant gets a stray crouton in my salad that I don't notice) and it seems to take 3 weeks for my symptoms to leave me before I start to feel better again so even though I've had stretches of feeling great with the accidental glutening I keep hitting the lows again. Because of this I'm starting to wonder if it's gluten at all or if I have something else terribly wrong with me and I'm just able to blame the reoccurring symptoms on some accidental glutening since it's been happening about every other month....

I'm just frustrated and needed to vent I think.

Maybe you need more time to heal. And maybe youll have to be even more rigid with what you eat.

MitziG Enthusiast
MitziG
Posted

I understand. This disease does so many weird things to us that at times it seems almost absurd to blame it all on gluten. It wouldnt HURT to get a blood test- depending on how high your levels initially were, and depending on how succesful you are at being gluten free, antibodies MAY still show up. Another option is to get a stool test done through Enterolabs. They claim to be able to detect antibodies even after being off gluten for some time, and they do genetic testing as well. Perhaps that would put your mind more at ease.

As someone who has suffered many similar health issues to yours for years, and was finally diagnosed via blood test and biopsy in April of this year, I can relate to what you are experiencing in regards to the on again, off again phenomenom of your symptoms. It is very difficult to avoid any potential source of conatmination, and I find myself getting accidentally glutened a few times a month. In my case, I know within an hour because my stomach will get rock hard, and my intestines react violently very soon after. There is no question anymore! But, the fatigue, the aches, the brain fog, the night sweats and chills, the foot pain, the ear aches, the sore throats, the canker sores, the hypo-tension...those symptoms will come and go for a week or two. And as soon as I seem to be feeling good again, I get glutened! And then it makes me question whether all those symptoms are actually from the gluten since they are always popping up again. BUT, like you- I can look back six months ago and know that BEFORE I was gluten free, they were a constant, everyday occurence. The fact that they occur several times a month by comparison is STILL an improvement. And if I could give up eating out completely (forced to do because of alot of traveling) I am pretty sure they would cease to occur at all.

Anyway, hope this helps to know that others are experiencing the same sort of ups and downs that you are!

Marilyn R Community Regular
Marilyn R
Posted

I have pretty much given up eating out. Oddly, when I had to travel for my dear mother's funeral, I had to eat out and didn't suffer. But I feel safer eating the food I've prepared (and packed). It may be a matter of trust in my situation. I've repetatively explained to my partner the concept of CC and gluten-free, but he still makes major mistakes, and he isn't stupid.

I used to be a waitress, and I've been a catering manager in a major hotel chain. It works as long as the people who work there don't make mistakes. People aren't perfect.

It does take longer than you expect to recover. Have you also looked into other food intolerances (soy, dairy, corn, nightshades, legumes, fructose)?

Good luck, wish you well.

AVR1962 Collaborator
AVR1962
Posted
But now I still get the symptoms time and again because of accidentally glutening (I mess up thinking something is gluten free that isn't or a restaurant gets a stray crouton in my salad that I don't notice) and it seems to take 3 weeks for my symptoms to leave me before I start to feel better again so even though I've had stretches of feeling great with the accidental glutening I keep hitting the lows again. Because of this I'm starting to wonder if it's gluten at all or if I have something else terribly wrong with me and I'm just able to blame the reoccurring symptoms on some accidental glutening since it's been happening about every other month....

I'm just frustrated and needed to vent I think.

I did the same. I finally had to start reading every label......surprisingly enough found wheat flour in my cooking spray. But in the process of experimenting I also learned that I am sensative to high fructose, dairy and salicylate. The last one was the hardest to figure out. So it could be that your diet isn't as tight as it needs to be or you could have another sensativity/intolerance.

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