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Initial Success With Going Gluten Free Only For Symptoms To Return


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#1 GlutenFreeGeoride

 
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Posted 16 April 2013 - 11:01 AM

Ok so last year I was diagnosed with gluten intolerance by my doctor. Within a week my digestion was better than it had been my whole life. Within a month I felt amazing, no more stomach cramps, bloating, chronic fatigue, skin problems, tired muscles etc  etc. I felt like a whole new person.  

 

However 6 months down the line symptoms are starting to reappear. I get incredibly bloated and my stomach swells right up every time I eat. Some foods are worse than others (cheese, peanut butter, crisps, chocolate and other high fat things seem particularly bad) but most things seem to cause some trouble. I also often feel sick after eating and my energy levels are suffering (I’m a competitive long distance runner and my times have fallen through the floor). I’ve been extremely careful with what I eat so I’m sure cross contamination isn’t the issue. Does anyone have any ideas what the cause may be? The strange thing is I felt so good for that six month period that it seems odd that I should now regress. One thing that may be of note is that I’ve had a fair amount of life stress in the last couple of months so whether this may be a factor I don’t know?

 

Any help appreciated!


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#2 IrishHeart

 
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Posted 16 April 2013 - 11:34 AM

Could be a dairy intolerance?

 

or

 

and I am just throwing this out here for your consideration, because the same thing happened to me and to another member (I'll let her pipe in here if she wants to) and  I knew full well it could not possibly be a gluten reaction..

 

If you do not have a thyroid problem or some other health issue, perhaps it is a histamine intolerance.

 

In me, high histamine levels from certain foods cause Major BLOATING (like the michelin man) flushing (red skin on my face, neck), sores on my scalp, a very painful burning sensation in my skin, nerves, and muscles --and causes them to "lock up" like I am the tin man--especially in my back and neck. It can give me a migraine, make me feel "down" and sluggish and then, it causes watery, burny BMs and painful spasms in my colon from time to time. I can be okay for a few days, then Bam!

 

Instant fatigue and feeling sick after I eat, no matter what food it is.


Yet I have no clinical IgE-mediated "allergies" (I have been tested)

 

I researched my brains out and read that a build up of histamine in the body can occur in people with an impaired gut..Makes sense--- and the symptoms abate when I cut out these foods. This is not an allergy, okay? It is an intolerance, secondary in celiac and other gut-wall impairing diseases. We just do not hear about it because only doctors in the UK seem to be aware of it.

 

My GI doc acknowledges this is a histamine response in me, but he did not seem to know what to do for it except, take the foods out that are high in histamine ( for a few months) and add them back in --in small increments until you find your tolerance threshold. 

 

This gut impairment will create an intolerance to foods high in histamine because we lack the enzymes

 

  • Diamino oxidase enzyme (DAO)

 

  • Histamine-N-methyl transferase enzyme (HNMT)

 that regulate histamine..

 

 

Examples of foods/substances that may increase histamine levels resulting in symptoms including digestive problems, headaches, bloating, fatigue, skin rashes. mood swings, insomnia, etc.  are:

 

 

 

  • Alcohol, particularly red wine and champagne. Also white wine and beer.
  • Aged, smoked, canned fish and fish sauces. Tuna fish, mackerel, sardines, anchovy, herring, catfish, salmon.
  • eggs (baked in things seem okay)
  • Smoked and processed meats such as salami, ham, bratwurst and bacon
  • Sauerkraut
  • Certain vegetables: tomato, spinach, eggplant, avocado, mushrooms and canned vegetables as well as commercially prepared salads
  • Certain fruits: strawberries, bananas, papayas, kiwi, pineapple, mango, tangerines, grapefruits, red prunes, pea
  • Red wine vinegar, balsamic vinegar
  • Soy sauce
  • Cheese
  • Mustard
  • Ketchup
  • Sunflower seeds
  • Chocolate/cocoa
  • Black tea
  • Some fruits: esp. citrus, bananas, strawberries, red prunes, kiwi, raspberries, papaya
  • Bread and confectionery made with yeast
  • Peanuts, cashews, walnuts

Drugs/Substances that may block intestinal DAO

  • N-Acetyl Cysteine
  • Cimetidine
  • Amino guanidine
  • Isoniazid
  • Alcohol

 

Read this well-researched article here:

 

http://thatpaleoguy....ne-intolerance/

 

and more here:



http://www.foodsmatt.../histamine.html
http://ajcn.nutritio.../85/5/1185.full

 

also, the book:

What HIT me? Living with Histamine Intolerance by Genny Masterman

 

and the lowhistaminechef.com

 

See if these symptoms sound like you.

 

Just a suggestion.

 

Hope you figure out what's happening.. Believe me, I know how maddening it is to have symptoms occur that do not make sense.

Good luck and let me know if you need more info.


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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 GottaSki

 
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Posted 16 April 2013 - 11:57 AM

Here I am -- I, like IrishHeart have had several setbacks while remaining as gluten free as possible in this world.  

 

What she has typed contains loads of valuable information - I have nothing to add - just confirm that I agree that histamine containing and histamine inducing foods could be a piece of your puzzle.

 

Here is a link I like to use for a broad overview of Histamine Intolerance - commonly (not in the US) referred to as HIT.

 

http://www.allergyuk...Intolerance.pdf

 

Keep looking for answers -- when celiac or gluten intolerance does not completely resolve with careful removal of gluten it is time to look to other foods - in my opinion and personal experience.

 

Hang in there :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 alesusy

 
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Posted 26 April 2013 - 04:01 AM

Amazing. Thank you. IAlmost 5 months gluten-free and I'm still struggling with periodic digestive problems and with new skin symptoms I never had before. I'll have a go at eliminating or cutting down on those foods...


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#5 alesusy

 
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Posted 26 April 2013 - 04:42 AM

I mean, maybe I don't have to ELIMINATE THEM apart from an initial period of depuration but the fact is I've been having problems after consuming certain foods or rather, vaste quantities of certain foods and I couldn't find a connection but now it seems there might be one... especially coffee, cola, nuts, chocolate, strawberries and red wine! I had noticed that I had problems with them but could not find a common denominator.


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#6 IrishHeart

 
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Posted 26 April 2013 - 07:28 AM

I mean, maybe I don't have to ELIMINATE THEM apart from an initial period of depuration but the fact is I've been having problems after consuming certain foods or rather, vaste quantities of certain foods and I couldn't find a connection but now it seems there might be one... especially coffee, cola, nuts, chocolate, strawberries and red wine! I had noticed that I had problems with them but could not find a common denominator.

 

If you were to take out just those you have listed here for 2-4 weeks, you will notice a difference. (if this is, indeed causing the problem for you)

I do not have a problem with coffee, BTW. This is not a high histamine food..

 

If you're like me, you're willing to give anything a try to see if it helps. :) Good luck! 


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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


#7 cavernio

 
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Posted 29 April 2013 - 04:35 PM

As an alternative, I thought I was being gluten free enough too. It seems quite obvious now that I wasn't. You may be more sensitive to traces of gluten than 20ppm. The vast majority of chocolate I've eaten I react to, and the vast majority of it won't claim any sort of gluten freeness. The peanut butter I was eating was bad, but I switched to a peanut-only one and it seems to be fine. I can't eat chips (crisps), none of the even gluten-free labelled brands agree with me.

 

In any case, be it another sensitivity or issue or gluten, I doubt it's just stress, and I think you're on the right track to be looking for a dietary reason.


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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy




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