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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.

What Were The Hardest Things To Find And Elminate?
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13 posts in this topic

what are the thing's I'm missing, I am sensitive to damn near everything, so it must mean that I am still taking in gluten somewhere, I don't know if it's improperly cleaned surfaces, or the wrong type of pots (all the right kind of metal, I think)

or maybe it's the soap the dishes are washed with? is that possible? what should I look for..

or can handsoap do the trick?

I'd have to be pretty sensitive cause I am so paranoid I hardly ever touch my food =/

tips, idea's or personal stories.. anything would help at this point, although I worry I'm just to lazy to see something obvious.

what were the CC's that when you found out made you go "wooooow, that of all thing's... never even thought about it"

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what were the CC's that when you found out made you go "wooooow, that of all thing's... never even thought about it"

my dog and cats food,, they are now almost grain free.

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Did you scrub out the silverware drawer/tray, and the drawer with spatulas, measuring cups, etc?

New sugar-- most people don't use fresh measuring cups between flour and sugar?

Lipstick/chapstick?

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I made a post about how to make the house gluten-free. Maybe some of the things I listed in there will be a shift. You should also search for Shauna's post on the subject - I can't remember which one, but she had stuff I hadn't thought of.

As for pots and pans, we got rid of anything that wasn't in good shape and stainless steel. We stripped and reseasoned our cast iron. Baking sheets have got to go or be lined every time you use them.

Check all your medications and supplements. Actually call the pharmacy you get them from.

It could also be that you have trouble with cross contamination on "naturally gluten-free" foods. We had this problem with lentils. I called the company we bought them from and sure enough they were packaged in a building that they package wheat products in. We also had trouble with arrowroot powder. That one was hard to figure out.

We aren't having legumes right now, but when we reintroduce lentils we'll try to get a clean source, and we'll definitely rinse them, soak them and rinse them again thoroughly before using them. Same deal with nuts. (We dehydrate them after rinsing them and soaking in salt water).

Ditto on the animal feed - I should add that to my post!!! We did find wheat in our shampoo, but not every bottle we had. We ended up switching to using baking soda for shampoo and apple cider vinegar as a rinse. Our hair is nicer than ever!

If you are fairly sure you have eliminated cross contamination and products with gluten and are still having problems, you might look into whether you have additional issues. We have a problem with corn and it's even harder to eliminate because it is everywhere, but it's not labeled! Sigh.

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Oh, and I found being single to be helpful. Maybe make everyone wash their hands when they come in the house and brush teeth etc.

laundry detergent?

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Write down everything that you eat and use and then when you are trying to figure things out you can go back and check. I'm way too lazy to follow my own advice, but I try to write down the important things. We went down to a very simple diet of just a few things to get a base level healthy place to start and then added things one at a time, one per week. It took a long time and eating was pretty boring for awhile. After a year I still haven't been able to retest everything, but I am much healthier.

Just about anything can do it, salt, spices, going into a bakery (airborne flour), shampoo, soap, dish soap, rinse aid. Get rid of anything that isn't essential while you are figuring things out. I used plain water for washing for a while to figure out if my cleaning supplies were a problem. Another good way to see if something might be bothering you is to eat more of it than usual. 3 or 4 times seems to work well. If it got me noticeably at 3 or 4 times the usual amount, I figured it was probably getting me before too. I brushed my teeth 10 times one day to make sure that my toothpaste was O.K.

The hardest thing for us was finding out that we had to peel our peaches when my son starting eating more of them. When he was eating one or two a day it wasn't a problem so I assumed they were safe and it took a long time to figure out that they were the problem.

Good Luck!

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The hardest thing for us was finding out that we had to peel our peaches when my son starting eating more of them. When he was eating one or two a day it wasn't a problem so I assumed they were safe and it took a long time to figure out that they were the problem.

Good Luck!

it is things like this that make me crazy :ph34r: ,,for me I can eat pears as long as they are canned,,fresh pears even if peeled are an issue((maybe I am not peeling deep enough )) :blink:

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My husband kissing me after he had eaten gluten at work, but didn't tell me he had eaten anything with gluten. My husband driving my car and stoppong at a fast food place and eating in the drivers seat before driving home (since we have a gluten-free house). Then I drove after him and got glutened from the steering wheel. Now he has to brush his teeth before kissing me and wipe down the steering wheel/shifter if he eats in my car. Sometimes I even make him wash his hands as soon as he comes home just in case there is gluten residue on them.

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Okay, stuff that seemed absolutely crazy when I considered it, but turned out to be an actual issue.

- salt, like Steph. A lot of salt had anti-caking agents that didn't work for me, or were processed in facilities that had wheat containing spice mixtures processed in the same place. Ugh.

- ALL my oils, sigh. I had all this great organic oil from spectrum, but always had this low level gluten issue until I figured out that every oil from them is run on the same line, and that line has wheat germ oil run on it, too. Stopped the oil and things improved some more. I use bariani olive oil now.

- definitely our dishsoap made a small difference. we use 7th generation now and it seems okay.

- ground meat of any kind. I found some once that was ground on a dedicated grinder, and then was getting sick off of it. Called up the company and found out they had started making sausages with wheat and sharing the grinder now. I'm still looking for safe ground meat, but haven't found any.

- unwashed produce has zapped me a number of times. Produce that is hard to wash and is grown covered with contaminated straw (like strawberries and mushrooms) has been an issue. Wax coatings (which can be on organic or inorganic produce) can have contaminants that get me. Especially citrus, apples, and pears. The top ten list of pesticide loads tends to correlate pretty heavily with my reactions, although I only found that out after I had noted the reactions, and then went and looked up the pesticides.

- I have done all right on new, stainless steel pans. My non-stick pans we bought new, and only used with gluten-free food for my kids, STILL gets me. :( I once thought I was reacting to a food, and happened to cook two batches of the same thing, one in my pan and one in the non-stick, and that's when I got the first clue that I reacted to the pan rather than the food! Tested it out and it was pretty darn clear. Pan=bad.

- spices are a no-go for me. Lots of preservatives involved in these. There are also a lot of exotic spices that are grown in places like India, and if they are grown by small farmers, it's pretty common to have wheat grown nearby for the farmer's own food.

- pesticides have turned out to be a big issue - a way to test this out is to try some of the same produce but from different farms. Get inorganic and organic, and maybe one or two from a local farmer who uses fewer fertilizers. There were a few fruits/veggies that are commonly given a particular gas/pesticide/coating that we tested this way and were able to narrow it down to the contamination rather than the food itself.

Sympathy on the paranoia! You react often enough, I think it's hard to avoid that feeling until you KNOW what's safe! Especially if your reaction is nasty enough.

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Food for Life gluten-free bread. I hadn't eaten any bread in quite a while anad decioded to try a couple loaves. First one was fine, but the next time a I got one I got glutened right away. So, I guess that wasn't hard to find really, just the variability of it being ok and then not ok bugs me. I'll never buy their products again.

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I found I reacted to all gluten free processed foods, the ones on shared product lines even worse. Wheat in my shampoo, SO eating and and glutening the steering wheel, refirgerator door, cabinet handles. My cat's cat food. The toilet handle! Not cleaning the siverware drawer, the toaster sat right above it. Plastic containers, the collander. That's all I can think of at the moment.

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I started drinking rice milk when going gluten free. Then I stopped, and started again. I was going downhill each day. I found out that Rice Dream processes their rice milk with barley! They don't say that on the label of course, but it is on their website. I got better after I switched to almond milk.

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Domesticactivist, how do you shampoo with baking soda? Do you mix it with water first or what? I'm thinking I'd like to try that. Thanks.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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