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Symptoms And Cfs


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#1 bammers

 
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Posted 15 March 2013 - 05:29 AM

HI everyone,

I joined here some time ago as I was concerned about symptoms that I thought may have been related to celiac disease ...I had a blood test and endoscopy which both resulted in negative results so I resigned myself that it just the symptoms of CFS and fibromyalgia which I wa diagnosed with 8 years ago.

I never seem to get to the bottom of my stomach problems with one thing or another but it's starting to really get me down and I could do with some advice if you don't mind. I seem to struggle with certain food and what I think are reactions to them, but I get overwhelmed with how tired I am even tho I know indeed to start eliminating food,I started paleo last week and get the dreaded carb flu which knoecked me out so I felt like I couldn't carry on with it, my main problems are...

Tomatoes vinegar mayonnaise salad cream, and chocolate, I get excess saliva straight away and a bit wheezy and a racing heart. I get very tired too.

Bananas give me a bloated stomach straight away and bread burns my mouth and really bad gas, sorry tmi.

I also suffer from acid reflux and although I take omperprazoledaily I stil wake up choking on sick some nights and I have constant hoarse voice, nose sores that won't go away,mild psoriasis too.

The worst problem right now tho is constant itching which is driving me mad and a weak bladder, I just feel very inflamed if that makes sense, I have a double appt with my gp next week an will discuss this with him, but wanted to see. If anyone had any advice in the meantime, or what questions I should ask him, thanks so much for reading this long post I appreciate it very much.
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Diagnosed C.F.S. August 2005
Diagnosed Fibromyalgia August 2005

Blood test for Celiac Disease July 2010-Negative

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#2 IrishHeart

 
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Posted 17 March 2013 - 09:07 AM

You mention these foods (tomatoes, vinegar, mayo, chocolate) and they are high in histamine. I have had trouble with them myself, causing many symptoms as you describe.  Perhaps you should be tested for allergies?

 

Pre-diagnosis, gluten/Celiac gave me itching and bladder problems. Off gluten, I have none of those symptoms. 

 

Celiac is not an allergy, of course, but you could also be gluten intolerant.  I have met many people who have felt so much better off gluten and their "fibro" and CFS--has disappeared. I know you tested negative for celiac, but there is no harm in trying a gluten-free diet to see if you feel better. Give it a few months. It can't hurt and it may help. 

 

Just a suggestion :) .


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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


#3 bammers

 
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Posted 17 March 2013 - 10:05 AM

Thanks so much for your advice, I will mention the histamine allergy to the doc and will give the gluten free diet a try again, its very hard to Implement anything when I'm so tired all the time, I've bought a diary too to keep a log of what I'm eating and any problems

Thanks again for your help
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Diagnosed C.F.S. August 2005
Diagnosed Fibromyalgia August 2005

Blood test for Celiac Disease July 2010-Negative

#4 IrishHeart

 
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Posted 18 March 2013 - 03:40 AM

I had the same response. The paleo approach did not work for me at all.

The increase in certain veggies and fruits raised the histamine levels in my body so high

and created symptoms that feel like glutenings (shortness of breath, hair loss, fatigue, itching, skin burning and prickling, insomnia, racing heart, bowel issues). I have no thyroid disease or any other AI problems any more ( besides osteoarthritis) except wicked joint and muscle pain  and this, too can be related to the raised histamine levels . I was given a "fibro label" years ago--much like dozens of others on this site-- and that is often a misdiagnosis for celiac and gluten intolerance.

 

 I read up on histamine intolerance. I am not the only member on here with this problem and we have compared notes.  :) She also has a problem with heat intolerance. (anything is possible, it seems, when the body has been ravaged by long undiagnosed celiac) 

 

This is not going to show up on classic skin-prick IgE-mediated allergy testing. 

It is an intolerance to too much histamine circulating in the body because histamine is broken down in the gut by 2 enzymes--the key one

is diamine oxidase (DAO) and amino acids. If you are deficient in those because of malabsorption caused by celiac (or some other gut impairment).you may have a problem
with foods high in histamine. (alcohol (darn it!) tinned fish, shellfish, spinach, tomatoes, avocado, cheese,  strawberries, chocolate, mushrooms, vinegar, soy etc) 

 

No allergy doc will be aware of this (the ones in Europe are, but they are way ahead of the pack) but a savvy GI doc will be--mine is! :) . All I know is, I took those foods back out and I am starting to feel so much better again after mysteriously going downhill back in January. 

 

If you do an elimination diet, try taking out gluten and dairy first for 2 weeks, if you see a difference, good---keep going. 

I used the failsafe diet when I was first diagnosed and very ill from celiac and it helped immensely.

 

Just remember that FMS and CFS are "syndromes"--like IBS--and they are a collection of symptoms that

sound an awful lot like celiac/gluten intolerance. Many of us on here are skeptical of those diagnoses because we heard them too (before DX) and we know how those symptoms can resolve off gluten.  I was barely able to walk the length of my driveway or tie my own shoes  without gasping for breath 2 years ago. I was dying a slow death. 

 

Take probiotics, trial the gluten-free/DF diet for several months and with time, you may start to feel better.

 

This is not medical advice, okay. I am merely speaking from experience (and watching so many people, especially a close friend with CFS and FMS, etc. improve drastically off gluten) Good luck, hon!


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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





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