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. - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

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

    2. - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    4. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

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

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748

    Donna Shields
    Newest Member
    Donna Shields
    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

    • Haugeabs
      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
×
×
  • 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.