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

Gluten Free Products Are Making Me Sick

Mack the Knife

Recommended Posts

Mack the Knife Explorer
Mack the Knife
Posted

I was diagnosed with Coeliac disease at the end of 2009. I have been on a strict gluten free diet ever since. I don't cheat and I am really careful about eating out and cc, etc. However, I have not gotten better on a gluten free diet. My symptoms persisted and when my gastroenterologist re-did the blood tests and biopsy they came back as still positive for Coeliac disease. He suspected I was still accidentally ingesting gluten from somewhere.

So I cut out everything and went back to unprocessed basics. Fruit, veg, meat, chicken, fish, nuts, seeds and lactose free dairy. And it worked! After two weeks or so, I felt better than I have felt for ages. My energy came back and my gastro-intestinal symptoms disappeared.

So I went to see a dietician and told her what I had been eating and the changes I had made. She thought I was probably getting sick from using contaminated gluten free flours (I love baking!) and she said I should be fine as long as I was more careful about where I sourced my gluten free stuff from.

So I ate some certified gluten free cereal and some certified gluten free buckwheat crispbread (made in a dedicated gluten free facility by a company that specialises in gluten free products). The next day all my symptoms came back and I have felt like crap for the last couple of days. So I have cut everything back out again and hopefully that will get me back to feeling better soon.

So am I so insanely sensitive to gluten that I can't tolerate certified gluten free food (that has to meet Australian food labelling requirements of testing under 5ppm)? Or am I intolerant to something in the gluten free food? I didn''t get sick instantly. There was a delay of about a day before it effected me.

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

Celiac.com Sponsor (A8-M):


WheatChef Apprentice
WheatChef
Posted

If this occurs from a wide array of gluten-free products (ie: not just soy/corn/etc containing ones) then you might be experiencing carbohydrate intolerance. Would certainly account for the GI symptoms.

Mack the Knife Explorer
Mack the Knife
Posted
  • Author

If this occurs from a wide array of gluten-free products (ie: not just soy/corn/etc containing ones) then you might be experiencing carbohydrate intolerance. Would certainly account for the GI symptoms.

You can be intolerant to carbohydrates???? Damn! I don't know if I could cope with that one.

I was eating potatoes and sweet potatoes when i was feeling good. Are grain carbs different from potato carbs?

In retrospect, I probably should have started by re-introducing just one thing - preferably with a single ingredient. The stuff I ate was regular gluten free products with several ingredients.

Skylark Collaborator
Skylark
Posted

By "carbohydrate intolerance" do you mean FOADMAP foods? There are some people who have gut issues when they eat FODMAPs (Fermentable Oligo-, Di-, and Mono-saccharides, And Polyols). Some are fructose intolerant too, meaning they don't absorb fructose properly. And yes, potatoes are lower FODMAP than grains.

Open Original Shared Link

Could also be lectins. Where's Mushroom? She finds foods with lectins very problematic though the diet you arrived on sounds more like low-FODMAP.

Open Original Shared Link

Maybe take a look at the specific carbohydrate diet? A lot of people around here really like that one.

Open Original Shared Link

dilettantesteph Collaborator
dilettantesteph
Posted

I have the same issue. I buy my gluten free grains whole and sort them. I find the odd grain that looks like wheat. I remove it. Then I wash, dry and grind for baking. I can eat the grains that way. I seem to be sensitive to the allowed levels. I can't even eat the certified stuff, though I do better with the stuff from Australia as your limits are lower than ours (USA). I am glad that you have managed to figure out how to feel better. Even if you are unable to eat grains, it is better than being sick all the time.

GFinDC Veteran
GFinDC
Posted

...

So I ate some certified gluten free cereal and some certified gluten free buckwheat crispbread (made in a dedicated gluten free facility by a company that specialises in gluten free products). The next day all my symptoms came back and I have felt like crap for the last couple of days. So I have cut everything back out again and hopefully that will get me back to feeling better soon.

So am I so insanely sensitive to gluten that I can't tolerate certified gluten free food (that has to meet Australian food labelling requirements of testing under 5ppm)? Or am I intolerant to something in the gluten free food? I didn''t get sick instantly. There was a delay of about a day before it effected me.

So what are the ingredients in the cereal and the crisp bread? Can you add those ingredients in isolation to your diet and see if you react to them?

Marz Enthusiast
Marz
Posted

Be careful of the "home industry" gluten-free stuff.

I was ecstatic to see a whole range of gluten-free biscuits being sold at the local grocery store. A few days later started getting reactions :( I noticed when I was at the store, the range being sold by the manufacturer included biscuits with wheat ingredients as well as gluten-free stuff.

I'm assuming she made the gluten free items with the same baking utensils and oven as the wheat items, there was no type of warning like "being processed in the same lines...", but it was definately "home industry" type goods so bleh. Also, flour gets everywhere :(

Proof was when I made my own biscuits using identical ingredients, obviously in a gluten-free kitchen. No reaction at all! Safe to say I'm not trusting home industry anymore...

What is your reaction to plain grains - like rice, corn, maize/corn porridge?

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

Celiac.com Sponsor (A8-M):


  • 4 weeks later...
Guest tamilynn38
Guest tamilynn38
Posted

I was diagnosed with Coeliac disease at the end of 2009. I have been on a strict gluten free diet ever since. I don't cheat and I am really careful about eating out and cc, etc. However, I have not gotten better on a gluten free diet. My symptoms persisted and when my gastroenterologist re-did the blood tests and biopsy they came back as still positive for Coeliac disease. He suspected I was still accidentally ingesting gluten from somewhere.

So I cut out everything and went back to unprocessed basics. Fruit, veg, meat, chicken, fish, nuts, seeds and lactose free dairy. And it worked! After two weeks or so, I felt better than I have felt for ages. My energy came back and my gastro-intestinal symptoms disappeared.

So I went to see a dietician and told her what I had been eating and the changes I had made. She thought I was probably getting sick from using contaminated gluten free flours (I love baking!) and she said I should be fine as long as I was more careful about where I sourced my gluten free stuff from.

So I ate some certified gluten free cereal and some certified gluten free buckwheat crispbread (made in a dedicated gluten free facility by a company that specialises in gluten free products). The next day all my symptoms came back and I have felt like crap for the last couple of days. So I have cut everything back out again and hopefully that will get me back to feeling better soon.

So am I so insanely sensitive to gluten that I can't tolerate certified gluten free food (that has to meet Australian food labelling requirements of testing under 5ppm)? Or am I intolerant to something in the gluten free food? I didn''t get sick instantly. There was a delay of about a day before it effected me.

You may have more than just celiacs disease- you also may have gluten intolerance or starch problems- you should be tested to see if you have problems with carbs-

Archived

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

Go to topic listing

  • 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. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have...
    2. par18
      - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free...
    3. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    4. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    5. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748
    Abbyyoung417
    Newest Member
    Abbyyoung417
    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

    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      IBS-D vs Celiac

      By par18 · Posted

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @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/
×
×
  • 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.