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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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13 posts in this topic

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

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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.

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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! :)

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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.

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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.

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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.

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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. :-)

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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: http://www.coeliac.org.au/professionals/index.html , 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!

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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.

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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.

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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?

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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.

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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!

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