Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Initial Success With Going Gluten Free Only For Symptoms To Return


GlutenFreeGeoride

Recommended Posts

GlutenFreeGeoride Newbie

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

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:

 

Open Original Shared Link

 

and more here:



Open Original Shared Link
Open Original Shared Link

 

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.

GottaSki Mentor

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.

 

Open Original Shared Link

 

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 :)

  • 2 weeks later...
alesusy Explorer

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...

alesusy Explorer

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.

IrishHeart Veteran

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! 

cavernio Enthusiast

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

    2. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

    4. - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,543
    • Most Online (within 30 mins)
      7,748

    Jeanette K.
    Newest Member
    Jeanette K.
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.