Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Spices


Mack the Knife

Recommended Posts

Mack the Knife Explorer

I've been on a strict gluten free diet for 18 months now and I'm still getting sick on a regular basis.

My latest blood test came back strongly positive for Coeliac disease so it seems like the problem is that I am getting exposed to gluten somehow rather than some other food intolerance.

I am very careful about what I eat. However I do eat out a lot. So for the last few weeks I haven't eaten out at all - and I've gotten sicker.

So now i think that there must be something at home that I am eating on a regular basis that is making me sick. SO I've been going through my kitchen trying to figure out the problem.

I live in Australia where we have extremely strict food labelling laws (products labelled gluten free must test < 3ppm and wheat/barely/rye/oats must be declared on labels). So it is unlikely that products that are labelled gluten free are making me ill. I figure it must be something that is gluten free by ingredient but is contaminated during processing.

I don't eat much processed foods. But I do like to cook and I use a lot of single ingredient spices. So I went through all my spices and turned up a few packets that say in very fine print, "May contain gluten due to shared equipment".

So I rang all the major spice companies and they all process their single ingredient spices on the same equipment they use to make their seasonings (which contain wheat starch and wheaten cornflour). They all say they wash the equipment between different products but who knows how controlled that process is.

So my question is... would that be enough to make me sick or am I being paranoid? Could I be eating enough minute amounts of gluten for it to have a cumulative effect? I don't get very sick but I do feel low level crap a lot of the time and something is definitely keeping my antibodies active


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Depends on how sensative you are. If you think it is affecting you, remove it and go for ones that aren't on shared lines.

T.H. Community Regular

So my question is... would that be enough to make me sick or am I being paranoid? Could I be eating enough minute amounts of gluten for it to have a cumulative effect?

If you are sensitive enough, or the gluten cc is high enough, it certainly could be an issue.

Currently, some members of my family can use spices, but I haven't found any so far that I can have without having a reaction. :(

Although I'm now growing a huge herb garden to make up for it. Works out okay, although I really miss cinnamon! :)

Mack the Knife Explorer

If you are sensitive enough, or the gluten cc is high enough, it certainly could be an issue.

Currently, some members of my family can use spices, but I haven't found any so far that I can have without having a reaction. :(

Although I'm now growing a huge herb garden to make up for it. Works out okay, although I really miss cinnamon! :)

Damn! Even salt and pepper?

I never though I was super sensitive because I've never had a major reaction. But I just keep feeling bad a lot and I'm starting to think that it shouldn't take this long for my antibodies to return to normal levels.

dilettantesteph Collaborator

I do have a problem with spices. I even had to be careful about my salt and pepper. I have a salt which seems to be safe and for spices I grow my own. I do O.K. with carefully sourced garlic and onion. For awhile I tried getting my spices whole and washing them, then grinding, but I wasn't very successful at that, and I am so sensitive that washing often isn't enough. That might be something which you would like to try though.

I don't think that you are paranoid to consider this possibility. It is easy to test. Just leave them out for a few days. Then it may be time to search for safe spices or grow your own.

I hope you feel better soon.

Marilyn R Community Regular

No, I don't think you're being paranoid.

I grow my own spices (a few basils, flat leaf parsley, chives, sage and thyme, rosemary on my front porch in a big pot). It gets eastern exposure.

The sum total of my efforts is filling whatever is left in the bottom of my coffee pot in the morning with water, and dumping it in the potted herbs, being careful to avoid watering the rosemary because rosemary likes to be dry.

Sometimes I toss more water on the basil in the summer, in the afternoon. When I get tired of having to baby the basil I make pesto without cheese. It's delicious on fish or poultry.

Can you get McCormick's seasonings? They report that they're gluten-free. I hope you feel better soon. I would have thought you were getting gluttened from eating out, never would have suspected herbs and spices. I don't know if you have any Indian grocery stores around you, but I've never felt bad from Indian spices.

T.H. Community Regular

Damn! Even salt and pepper?

Yeah. Pepper always seemed to be a problem now. Although a lovely gal who lives in CA had access to a pepper tree, which isn't real pepper but makes berries that are used as red pepper corns. She let me have a bag of the berries. Those, totally unprocessed and untouched, I have no trouble with.

I had to drop two different salts. One was when I couldn't seem to get well and my dietician mentioned that iodized salts contain corn and could be contaminated. Changing to sea salt helped with that.

And then the salt I used, that seemed really gluten free, I had to drop after the company made a change and I suddenly started getting sick. Once I dropped the salt, my health improved again. The next day.

I couldn't say for sure what it was, but my symptoms were the same I get when I get gluten (not gut, for me) so I think it was the salt. I have a different salt now that seems to work, so I'm going with 'gluten issue' for the moment. :-)


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



Celiac.com Sponsor (A8-M):



weluvgators Explorer

I live in Australia where we have extremely strict food labelling laws (products labelled gluten free must test < 3ppm and wheat/barely/rye/oats must be declared on labels). So it is unlikely that products that are labelled gluten free are making me ill. I figure it must be something that is gluten free by ingredient but is contaminated during processing.

When we travelled to Australia earlier this year, I was a bit shocked to find gluten free labels on some of the imported food. I noticed one manufacturer had a "wheat free" label on their product instead of the "gluten free" label that they carry on their American package, and I wondered if that was a way to avoid the "gluten free" Australia regulations. But I saw American "gluten free" label imports that are only tested to 10 PPM according to my previous calls to their facility. I recently came across this page for Coeliac Australia: Open Original Shared Link , and they claim endorsement requires, "1.Tested to have gluten levels <20ppm (considered suitable as per the Codex standard for gluten)" and some other things. That testing statement seems more aligned with the imported products that I was finding when I looked in our shopping there. I was also pretty shocked at the lack of awareness in many of the restaurants that we went to. I often found the "gluten free" stuff in the same food case as gluten (and sometimes even on the same plate - thus turning a "gluten free" item into a "low gluten" one). I was shocked to find that most (maybe even all) times, there would be gluten foods on shelves OVER the "gluten free" foods. And we have also found that eating significant quantities of even really low level contamination adds up quick for us, so we have found eliminating all the processed foods to really have a positive impact on our health and wellness.

And we had to get rid of all of our spices. I have found a salt that seems safe for us using recommendations from other super sensitives. I use a pepper that I buy whole in bulk and test to as high a degree of sensitivity as possible (using the whole peppercorns, and they are coming from a GFCO certified supplier as well). We do use some other spices on occassion that we buy whole, wash extensively, dry and grind ourselves. I managed to relieve many of my lingering issues when we took the no spice/seasoning route. We do use whole herbs, garlic and ginger that we wash and process ourselves.

I hope you can get it figured out quickly!

Mack the Knife Explorer

Yeah. The Australian Coeliac Society has decided to endorse products that test under 20ppm because they think our food labelling laws are too strict and dramatically limit the choice available to Coeliacs in Australia. A lot of the major gluten free brands can't be sold in Australia because they can't meet the less than 3ppm requirement.

And I agree that while Australia has a very high general awareness of gluten free and there are lots of options when you eat out.... the finer points of the diet elude most people.

Mack the Knife Explorer
.

I hope you feel better soon. I would have thought you were getting gluttened from eating out, never would have suspected herbs and spices. I don't know if you have any Indian grocery stores around you, but I've never felt bad from Indian spices.

That's what I thought too. But I haven't eaten out at all for three weeks now and I've been feeling worse. So that's made me think that there must be something at home that's getting me.

I live in a completely gluten free household and I've thrown away everything (food, kitchen equipment, storage containers, etc) that were used prior to my diagnosis.

So I think whatever is getting me must be something processed that is gluten free by ingredient but made on the same equipment as gluten stuff.

GlutenFreeManna Rising Star

That's what I thought too. But I haven't eaten out at all for three weeks now and I've been feeling worse. So that's made me think that there must be something at home that's getting me.

I live in a completely gluten free household and I've thrown away everything (food, kitchen equipment, storage containers, etc) that were used prior to my diagnosis.

So I think whatever is getting me must be something processed that is gluten free by ingredient but made on the same equipment as gluten stuff.

Is your significant other gluten-free? Are they careful about kissing, hand washing, etc if they eat gluten outside of the house? for example: I have gotten sick from the car steering wheel after my husband ate fast food and then drove without washing his hands.

Any pets?

Any hobbies that could use gluten containing materials?

Mack the Knife Explorer

Is your significant other gluten-free? Are they careful about kissing, hand washing, etc if they eat gluten outside of the house? for example: I have gotten sick from the car steering wheel after my husband ate fast food and then drove without washing his hands.

Any pets?

Any hobbies that could use gluten containing materials?

My girlfriend eats a bit of gluten outside the house not much because she's wheat intolerant. We are very careful about kissing if she's eaten gluten.

I've checked the cat food and kitty litter.

I do ballroom dancing so I probably occasionally dance with people who may have just eaten gluten but not on a regular basis.

Marilyn R Community Regular

I had to drop two different salts. One was when I couldn't seem to get well and my dietician mentioned that iodized salts contain corn and could be contaminated. Changing to sea salt helped with that.

Wow, I never knew that. Hope you are doing better!

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748

    Nick H.
    Newest Member
    Nick H.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...