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

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

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

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

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

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

...

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

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

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.

  • 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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.