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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.