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tennisman

Refractory Celiac Disease

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Soy pops up in about 50% (or so it seems) of processed gluten free foods, and in fact foods that are processed in general. Cookies, breads, mayonnaise, pasta, salad dressings, marinades, oh STOP ME before I fill lthe page!!:lol:

I checked all the gluten free processed foods and found soya in some biscuits but can't find it in any of the other foods I eat . I'm from england maybe they don't use it in gluten free processed foods as much here.

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I thought for quite awhile when I went gluten free that I was being glutened by gluten free foods even stuff that was made in a dedicated facility. It turned out that the issue was soy. As was mentioned it is in a lot of gluten free foods. It will be clearly labeled in the ingredients as it is one of the 8 major allergens. Some of the soy free, gluten free stuff I eat regularly are Udi and Bakery on Main breads, Glutino makes some good crackers, Snyders and Wylde pretzels, and Starkist Tuna in the gold can is a staple as it is the only one I have found without soy. It is packed in just water. Soy may not turn out to be an issue for you but it is worth eliminating it for a while to see.

I checked everything I eat and found soya flour in biscuits but I don't really eat them much , I will double check the products I eat but can't find any other soy. If I find it in any other products I will eliminate them. I just found soya in some gluten free bread but I very rarely it that bread.

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I think that I react to very low levels of gluten. I think that I would be diagnosed with refractory celiac if I didn't eat super carefully. I don't eat processed foods. I don't eat gluten free foods. I eat naturally gluten free foods only. I don't eat coated produce. I even squeeze my own juice. I wash things like crazy. If I don't do this I get symptoms.

You could try a diet of produce and meat for a couple of weeks and see what happens.

I will try that idea thanks. I also eat very carefully but than I eat processed foods which could be where i'm going wrong .

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Do any of the products use Codex Wheat Starch? In some places that is considered to be gluten free but may be still too high of a level for you. Just throwing another posibiiity out there.

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Do any of the products use Codex Wheat Starch? In some places that is considered to be gluten free but may be still too high of a level for you. Just throwing another posibiiity out there.

Yes, I have read that on a few products I eat . I have always wondered is it really safe . I understand it's wheat with all the gluten taken out ? Today I eat a gluten free pizza base that had the wheat starch since than my stomach has hurt but usually my stomach hurts after any food . But since having the pizza I have felt exhausted, I had to go sleep as I couldn't stay awake . I'm not sure if what I eat caused my tiredness or not though.

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What are soy foods ? I tried searching on google but can't find a list of foods soy is in .

Soy is in just about everything processed. From tuna to potato chips. It's in chocolate, tea, ice cream, canned broth, soups, seasoning mixes, salad dressings, protein bars and shakes...many other things...I've even seen soy in goat cheese before.

Many gluten free products use soy flour and other soy products. Look out for soy flour, soy protein, soy protein isolate, soy lectin, soybean oil. Some people find they can tolerate soybean oil better than the other forms but it's best to just remove all soy at first if you are going to avoid it. In the US (and I think Cananda is this way too) they have to label soy so check the ingredient label.

ETA: Sorry, I missed an entire page of responses when reading. It seems I repeated info others already gave you.

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Yes, I have read that on a few products I eat . I have always wondered is it really safe . I understand it's wheat with all the gluten taken out ? Today I eat a gluten free pizza base that had the wheat starch since than my stomach has hurt but usually my stomach hurts after any food . But since having the pizza I have felt exhausted, I had to go sleep as I couldn't stay awake . I'm not sure if what I eat caused my tiredness or not though.

It's not safe for everyone. Some people can't tolerate Codex. You're not refractory yet!

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Yes, I have read that on a few products I eat . I have always wondered is it really safe . I understand it's wheat with all the gluten taken out ? Today I eat a gluten free pizza base that had the wheat starch since than my stomach has hurt but usually my stomach hurts after any food . But since having the pizza I have felt exhausted, I had to go sleep as I couldn't stay awake . I'm not sure if what I eat caused my tiredness or not though.

I could be wrong but I think you now have a very good chance of finally healing fully. Do drop those products for a month or two. I would not be surprised at all if you are feeling much better when the Codex is out of the picture.

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Soy is in just about everything processed. From tuna to potato chips. It's in chocolate, tea, ice cream, canned broth, soups, seasoning mixes, salad dressings, protein bars and shakes...many other things...I've even seen soy in goat cheese before.

Many gluten free products use soy flour and other soy products. Look out for soy flour, soy protein, soy protein isolate, soy lectin, soybean oil. Some people find they can tolerate soybean oil better than the other forms but it's best to just remove all soy at first if you are going to avoid it. In the US (and I think Cananda is this way too) they have to label soy so check the ingredient label.

ETA: Sorry, I missed an entire page of responses when reading. It seems I repeated info others already gave you.

Thanks for the information :)

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I could be wrong but I think you now have a very good chance of finally healing fully. Do drop those products for a month or two. I would not be surprised at all if you are feeling much better when the Codex is out of the picture.

The only products that have the wheat starch are biscuits and pizza bases . I get these products on prescription Is it really possible for 1-2 packets of biscuits and 1 pizza base every 2 months to stop my villi healing fully ? I will drop the products , but i'm not too sure if it will help as I only started getting these products in late 2009 and my stomach problems started up in 2008. The biscuits and pizza bases I used to get have stopped being made so I can't check the ingredients on them.

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I have had a blood test a few times that can see if I have eaten any gluten and the doctors have always told me I haven't had eaten any gluten, the test always comes back fine . Shouldn't the test say I have been eating gluten if it is the wheat starch codex if that I have a problem with ? My new doctor only suggested Refractory because of endoscopy results ( villi not fully healed ) . I still don't think i'm eating gluten anywhere and the fact the blood test comes back fine all the time saying i'm not accidentally eating gluten makes no sense why my villi isn't fully healed, Maybe the blood test isn't accurate enough , and can't pick up the wheat codex as it's a very small amount ?

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I have had a blood test a few times that can see if I have eaten any gluten and the doctors have always told me I haven't had eaten any gluten, the test always comes back fine . Shouldn't the test say I have been eating gluten if it is the wheat starch codex if that I have a problem with ? My new doctor only suggested Refractory because of endoscopy results ( villi not fully healed ) . I still don't think i'm eating gluten anywhere and the fact the blood test comes back fine all the time saying i'm not accidentally eating gluten makes no sense why my villi isn't fully healed, Maybe the blood test isn't accurate enough , and can't pick up the wheat codex as it's a very small amount ?

Yes, the blood test are not sensitive enoguh to pick up that small amount. Your body is more sensintive than the blood tests. Considering that for testign purposes it is reccomeneded people who have been gluten free for a while eat 3-4 slices of bread everyday for 3 months just to have a chance at a positive test, it seems like it takes a very large amount of gluten dammage to make it show up in the blood.

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Yes, the blood test are not sensitive enoguh to pick up that small amount. Your body is more sensintive than the blood tests. Considering that for testign purposes it is reccomeneded people who have been gluten free for a while eat 3-4 slices of bread everyday for 3 months just to have a chance at a positive test, it seems like it takes a very large amount of gluten dammage to make it show up in the blood.

This is a different blood test i'm talking about , I had the blood test in 2003 that came back saying I had celiac disease. But I'm talking about a different test to see weather or not people have been not sticking to there diet or if they have accidentally been eating gluten. My old doctor said they do the test when anyone with celiac comes back with stomach pain . He said some people say they are sticking to the gluten free diet. But when they do this test it comes back and they can see if someone has been eating gluten or not.

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I have had a blood test a few times that can see if I have eaten any gluten and the doctors have always told me I haven't had eaten any gluten, the test always comes back fine. My new doctor only suggested Refractory because of endoscopy results ( villi not fully healed ) .

There is a chance of a false negative with the blood test, but if it's looking good now, and the villi are still not healing, then I think you're correct that it's less likely that it's gluten, and more likely that it's something else.

I was eating gluten free and not healing as well on the diet, and here's what my GI told me - he's the nearest celiac expert to me -

1. Many of his celiac patients don't heal if they have food allergies or intolerances that haven't been diagnosed, because eating these foods causes inflammation in the gut and the gut can't heal well with that.

2. Many of his celiac patients are more sensitive to artificial dyes, preservatives, pesticides, and chemicals, and don't heal until they drop all of these in their food (go very whole-foods and organic).

3. Many of his celiac patients are sensitive to genetically modified foods, and won't heal while eating them - although I think that's not an issue in Britain at the moment, yes?

Soy, dairy, and night shades are the three most common food issues I've seen other Celiacs have, with corn and other grains following close behind. Some others have included: sensitivity to histamines, to sulfites, to annatto. Fructose intolerance.

When I was diagnosed, I had no idea I had other food issues. I don't get hives, or rashes, or anything that would suggest it, I thought. But I did a food journal, where I recorded what I ate(at what time), and how I felt, how I slept, etc.... And once I dropped the processed food (because frankly, it's MUCH easier to keep track of ingredients when there are less of them!) I started to notice patterns.

Turns out, I'm allergic to some of the major ingredients that are added to processed foods, especially gluten-free ones: milk, eggs, sugarcane, soy, potato. These were later confirmed with allergy tests. I dropped them, and it made a huge difference. Admittedly, I'm a super-sensitive celiac like DilettanteSteph is, so I had to go crazy-gluten free just to avoid all the gluten that hurt me, too. But I just had another endoscopy a couple weeks back, and avoiding all the allergens and all the gluten finally worked, and I'm completely healed now.

I would really recommend keeping a food journal for a while, see if there are any connections (reactions can be 24-48 hours later, sometimes, even), maybe gearing down on the food so it's not such a pain to do.

Oh, a few other things?

- in Britain, the new gluten free standard is now going to be 20ppm (for 2012, I mean). It used to be 200ppm. Scientists are working on new tests, but currently, the best test can only detect 2-4 ppm of gluten (neogen test), but I've heard rumors that even if it's more sensitive, it's not as accurate as the ELISA test.

- How do you check your gluten free products? I noticed that you mentioned reading all the labels. Do you look for ingredients only, or do you ask the companies about cross-contamination? CC might be enough to keep the blood test low but the villi still unhealed.

- aaaand, speaking of cc, with allergens, if you end up having any, one of the sad realities of this is that you can't just look at ingredients. You have to start exploring the food industry and what they add, what they have to report on the label, and what they don't have to report.

As an example? In America, soy can be an additive in waxes used on apples, pears, and citrus. Cornmeal is often used on the ground to prevent weeds on organic farms, and touches the veggies that touch the ground. Ripening sprays on tomatoes can contain corn. Yeast has added grain-based starch to help it hold together, and then is used in vinegar, but doesn't have to be listed because it's 'part of the processing.' Crushed nut shells are sometimes used in compost fertilizer and contaminate root vegetables.

It's truly amazing how many times our food is contaminated by other food on the journey from the field to our kitchen table. And how many of these don't have to be on the label, but still affect us, is frustrating at times, I have to admit.

Hopefully, if you keep a food journal, you'll find a connection quickly and it can help you get better!

Oh, just remembered! I have been trying to track down this study again, and seem to have lost it, but there WAS a study done on refractory celiac disease patients. When they tested them for allergies and intolerances, about a third (I believe, it's been over a year since I first read it) of the refractory celiacs had some sensitivities, intolerances, or allergies, and completely improved once they eliminated it. So you definitely wouldn't be the first to have this issue. :-)

Good luck!

Shauna

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This is a different blood test i'm talking about , I had the blood test in 2003 that came back saying I had celiac disease. But I'm talking about a different test to see weather or not people have been not sticking to there diet or if they have accidentally been eating gluten. My old doctor said they do the test when anyone with celiac comes back with stomach pain . He said some people say they are sticking to the gluten free diet. But when they do this test it comes back and they can see if someone has been eating gluten or not.

I'm not sure which different test your dr is using then. There may be some newer tests available today that were not available back then, but it is usually the same antibody tests that would be used to diagnose. See the information about testing and follow-up testing from the University of Chicago Celiac center: http://www.celiacdisease.net/assets/documents/2011CDCFactSheets_AnitbodyBloodTests.pdf

http://www.celiacdisease.net/assets/pdf/CDCFactSheetsFollowUpTests7.pdf

Perhaps there are other test I'm not aware of, but I thought these same tests were used everywhere.

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tennisman, here is an abbreviated list of some places to look for soy. I accept that soy is more ubiquitous in the U.S. than in U.K., by the way.

Soy protein may be present in an ingredient such as vegetable protein or natural flavoring.

Benadryl ® Fastmelts contain soy protein, and many other medications can also include soy. Check with your pharmacist before giving any medication to your soy allergic child.

Other names and products containing soy protein include:

Edamame

miso

natto

shoyu sauce

soy(soy albumin, soy fiber, soy flour, soy grits, soy milk, soy nuts, soy sprouts)

soya

soybean (curd, granules)

soybean butter

soy protein (concentrate, isolate)

soy sauce, tamari

tempeh

textured vegetable protein (TVP)

tofu

The following food additives may contain soy protein:

hydrolyzed vegetable protein (HVP)

flavoring (including natural and artificial)

canned chicken broth

vegetable broth, gum, and starch

bouillon cubes (beef, chicken, vegetable, etc.)

Since soy is one of the top 8 food allergens in the USA the good news is that there is a labeling law requiring that if soy is an ingredient in a product, it must be listed on the label. Read labels carefully!

Your allergist should be able to provide you with a complete listing of ingredients that may indicate soy protein. There are always new products being created with newly processed ingredient names. If you don't know the exact nature of the ingredient, don't eat it!

http://www.allergicc...y_allergies.htm

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There is a chance of a false negative with the blood test, but if it's looking good now, and the villi are still not healing, then I think you're correct that it's less likely that it's gluten, and more likely that it's something else.

I was eating gluten free and not healing as well on the diet, and here's what my GI told me - he's the nearest celiac expert to me -

1. Many of his celiac patients don't heal if they have food allergies or intolerances that haven't been diagnosed, because eating these foods causes inflammation in the gut and the gut can't heal well with that.

2. Many of his celiac patients are more sensitive to artificial dyes, preservatives, pesticides, and chemicals, and don't heal until they drop all of these in their food (go very whole-foods and organic).

3. Many of his celiac patients are sensitive to genetically modified foods, and won't heal while eating them - although I think that's not an issue in Britain at the moment, yes?

Soy, dairy, and night shades are the three most common food issues I've seen other Celiacs have, with corn and other grains following close behind. Some others have included: sensitivity to histamines, to sulfites, to annatto. Fructose intolerance.

When I was diagnosed, I had no idea I had other food issues. I don't get hives, or rashes, or anything that would suggest it, I thought. But I did a food journal, where I recorded what I ate(at what time), and how I felt, how I slept, etc.... And once I dropped the processed food (because frankly, it's MUCH easier to keep track of ingredients when there are less of them!) I started to notice patterns.

Turns out, I'm allergic to some of the major ingredients that are added to processed foods, especially gluten-free ones: milk, eggs, sugarcane, soy, potato. These were later confirmed with allergy tests. I dropped them, and it made a huge difference. Admittedly, I'm a super-sensitive celiac like DilettanteSteph is, so I had to go crazy-gluten free just to avoid all the gluten that hurt me, too. But I just had another endoscopy a couple weeks back, and avoiding all the allergens and all the gluten finally worked, and I'm completely healed now.

I would really recommend keeping a food journal for a while, see if there are any connections (reactions can be 24-48 hours later, sometimes, even), maybe gearing down on the food so it's not such a pain to do.

Oh, a few other things?

- in Britain, the new gluten free standard is now going to be 20ppm (for 2012, I mean). It used to be 200ppm. Scientists are working on new tests, but currently, the best test can only detect 2-4 ppm of gluten (neogen test), but I've heard rumors that even if it's more sensitive, it's not as accurate as the ELISA test.

- How do you check your gluten free products? I noticed that you mentioned reading all the labels. Do you look for ingredients only, or do you ask the companies about cross-contamination? CC might be enough to keep the blood test low but the villi still unhealed.

- aaaand, speaking of cc, with allergens, if you end up having any, one of the sad realities of this is that you can't just look at ingredients. You have to start exploring the food industry and what they add, what they have to report on the label, and what they don't have to report.

As an example? In America, soy can be an additive in waxes used on apples, pears, and citrus. Cornmeal is often used on the ground to prevent weeds on organic farms, and touches the veggies that touch the ground. Ripening sprays on tomatoes can contain corn. Yeast has added grain-based starch to help it hold together, and then is used in vinegar, but doesn't have to be listed because it's 'part of the processing.' Crushed nut shells are sometimes used in compost fertilizer and contaminate root vegetables.

It's truly amazing how many times our food is contaminated by other food on the journey from the field to our kitchen table. And how many of these don't have to be on the label, but still affect us, is frustrating at times, I have to admit.

Hopefully, if you keep a food journal, you'll find a connection quickly and it can help you get better!

Oh, just remembered! I have been trying to track down this study again, and seem to have lost it, but there WAS a study done on refractory celiac disease patients. When they tested them for allergies and intolerances, about a third (I believe, it's been over a year since I first read it) of the refractory celiacs had some sensitivities, intolerances, or allergies, and completely improved once they eliminated it. So you definitely wouldn't be the first to have this issue. :-)

Good luck!

Shauna

Thanks for all the information :)

I have always thought I had a few food intolerances. But I have been working with a dietcian for 10 months and recently he said he thinks we can rule out food intolerance. I did 3 food journals as you mentioned . I wrote down what I was eating , what time I ate and when the pain started. I couldn't notice any patterns , my dietcian couldn't notice any patterns and he also asked some of his colleagues who are food intolerance experts apparently lol and they couldn't notice any patterns. My dietcian did have me eliminate some foods and I still had pain. At first I thought it was nightshades but I was off them for a long time and there was no improvement. I still think there could be a ? over dairy foods though.

I have never heard about genetically modified foods what are they ?

How did you do the allergy testing is it blood tests ? I have always asked doctors about allergy testing but I don't think any of the doctors I see understand it properly , my sister did some allergy testing a few years ago and it turned out to be a big waste of time . I wanted to do a food intolerance test but it's ridiculously expensive and my dietcian said they are not very accurate , but I would still like to see what the test would say. I am glad you are completely healed now.

I don't really know much about ppm , all I know is changes are starting in 2012 , I thought I read it was suppose to be 0 ppm.

I only look for ingredients , I just don't think any of the foods could have cc as they are from companies who only make gluten free foods , I get all the processed foods on prescription. I don't really buy much from supermarkets these days they would have more chance of cc . I will contact some of the companies about cc and see what they say.

It must be very difficult having to research everything so much :(

Thanks again for the info :)

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I'm not sure which different test your dr is using then. There may be some newer tests available today that were not available back then, but it is usually the same antibody tests that would be used to diagnose. See the information about testing and follow-up testing from the University of Chicago Celiac center: http://www.celiacdisease.net/assets/documents/2011CDCFactSheets_AnitbodyBloodTests.pdf

http://www.celiacdisease.net/assets/pdf/CDCFactSheetsFollowUpTests7.pdf

Perhaps there are other test I'm not aware of, but I thought these same tests were used everywhere.

My doctor always said it was a different test , I will have to ask for the name of the test. I'm from england so maybe different tests are used ?

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tennisman, here is an abbreviated list of some places to look for soy. I accept that soy is more ubiquitous in the U.S. than in U.K., by the way.

Soy protein may be present in an ingredient such as vegetable protein or natural flavoring.

Benadryl

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I have always thought I had a few food intolerances. But I have been working with a dietcian for 10 months and recently he said he thinks we can rule out food intolerance. I did 3 food journals as you mentioned . I wrote down what I was eating , what time I ate and when the pain started.

A question re: this.

You mentioned you recorded the foods. Did you record down the farms/companies for the foods you ate? If not, and if your dietician or the intolerance expert didn't recommend them....they should have. :-( This was part of the pattern for us, quite a few times.

For example, we had a number of different oils, but they were all from the same company. That company processed one of our problem foods on the same equipment line and it contaminated every oil we tried from them. Couldn't figure that out for FOREVER. We had issues with corn, and that turned out to be in every iodized salt (a corn derived product is used to stabilize the iodine). So anything we added salt to was an issue. There are also a number of anti-caking agents in salt that can be issues. Farms will use the same pesticide, so if you have a problem with it, all the produce from them will make you sick. Companies process things in the same lines or in the same facility, so anything from the same company can be an issue with the same contaminants.

I've never had a dietician or an allergist ask me to keep track of companies, but we ended up slowly discovering this and finding it out. I actually was looking so much better after we figured it out that my allergist took notes on what I'd found out about some of the companies so he could use the information with his other patients. :D

Did you ever just fast for a day or so? That might at least let you know if food is really the issue.

Did they ever look at sensitivities as opposed to intolerances? Like to sulfites, histamines, fructose (malabsorption, rather than sensitivity, which can be a problem with legumes, fruits, veggies, grains, lots of things)? These are such a broad range of foods that it's hard to find a pattern, and they are not well studied as yet, so many docs don't have a clue about them.

Were you ever tested for parasites or bacterial gut infections like H. pylori? These can cause a lot of gut issues, and can also be affected by diet, so a change in diet might make the pain, nausea less, but not go away.

I have never heard about genetically modified foods what are they ?

These are foods that companies have modified the genes for. They are modified to have genes that resist pests, genes that have actual pesticides in the genes, genes to grow certain ways or be drought resistant. America has not banned these crops, despite growing evidence that they are not good for human consumption, but I believe they have been banned in the food supply in Europe, currently.

How did you do the allergy testing is it blood tests ? I have always asked doctors about allergy testing but I don't think any of the doctors I see understand it properly , my sister did some allergy testing a few years ago and it turned out to be a big waste of time.

I had a blood allergy test, where they take vials of blood and then test the blood for certain components that indicate a reaction to certain foods, but even my doctor said that it's pretty inaccurate. If you have bad allergies, like the type that are life threatening, it does pretty well. But for low grade allergies, there are a lot of false negatives and false positives. Some of mine seem to be fine, some not so much, but many of the ones that tested positive for me also were making me feel awful, so I'm pretty comfortable avoiding those.

I wanted to do a food intolerance test but it's ridiculously expensive and my dietcian said they are not very accurate

What food intolerance test did your dietician mention? I'm curious because there are only two I know of: for lactose intolerance and for fructose intolerance. There are a lot of factors that can make them inaccurate, I understand, yeah. However, any OTHER kind of intolerance, to my knowledge, there are no tests for whatsoever, like issues with annatto. None for chemical sensitivities, either, usually. :-(

I just don't think any of the foods could have cc as they are from companies who only make gluten free foods

That pretty much what I thought too at first, you know? Then I found out...gluten is everywhere. Mulch and compost often has gluten in it in the fields. Wheat is often a rotation crop with many of the gluten free grains and can cc it from the ground up. They share harvesters, shipping trucks, and often mills with gluten grains that are rarely cleaned enough to avoid all contamination. So that alone is enough to contaminate gluten free ingredients before they even get to the gluten free factory that process them. There is also some gluten in many soaps, including sometimes the ones that are cleaning the machines that process the gluten free foods. It's usually a gluten derived ingredient rather than wheat itself, but all those little touches of gluten sometimes add up to enough contamination for it to be problematic, sadly.

Gluten derived ingredients that have low enough levels of gluten that they are below 20ppm can be used, but sometimes, there are so many of them that it can become an issue, too.

If you're contacting companies, some questions that may be of use are if they test their gluten free products for gluten levels, and if they do, what is the gluten detection level for the test they are using. Often, they will say 'no detectable gluten' left after processing. That's not the same as none, and how much it is depends on what the detection level of the test is.

And yeah - all the research becomes a bit of a pain in the butt at times, I'll be honest. But one gets used to it, I think, and after a while, you've called all the companies so it's not so hard to call one every once in a while.

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I had the Cyrex Labs Gluten Cross Reactivity Test Done. I thought it was expensive especially considering it tests for so many gluten grains and dairy items both of which I am intolerant to, so I did not care. When my doctor recommended it, I did it in the hopes it would answer some questions about what foods I should avoid since it is so difficult to determine what foods cause what problems. My doctor explained that it means my body reacts to the foods as if they are gluten. Not sure how they know that looking at IgG and IgA. I think my doctor liked the lab though since I think he ordered another test through them. I wish Cyrex offered different packages where you did not have to pay for irrelevant parts of the gluten cross reactivity test pannel.

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A question re: this.

You mentioned you recorded the foods. Did you record down the farms/companies for the foods you ate? If not, and if your dietician or the intolerance expert didn't recommend them....they should have. :-( This was part of the pattern for us, quite a few times.

For example, we had a number of different oils, but they were all from the same company. That company processed one of our problem foods on the same equipment line and it contaminated every oil we tried from them. Couldn't figure that out for FOREVER. We had issues with corn, and that turned out to be in every iodized salt (a corn derived product is used to stabilize the iodine). So anything we added salt to was an issue. There are also a number of anti-caking agents in salt that can be issues. Farms will use the same pesticide, so if you have a problem with it, all the produce from them will make you sick. Companies process things in the same lines or in the same facility, so anything from the same company can be an issue with the same contaminants.

I've never had a dietician or an allergist ask me to keep track of companies, but we ended up slowly discovering this and finding it out. I actually was looking so much better after we figured it out that my allergist took notes on what I'd found out about some of the companies so he could use the information with his other patients. :D

Did you ever just fast for a day or so? That might at least let you know if food is really the issue.

Did they ever look at sensitivities as opposed to intolerances? Like to sulfites, histamines, fructose (malabsorption, rather than sensitivity, which can be a problem with legumes, fruits, veggies, grains, lots of things)? These are such a broad range of foods that it's hard to find a pattern, and they are not well studied as yet, so many docs don't have a clue about them.

Were you ever tested for parasites or bacterial gut infections like H. pylori? These can cause a lot of gut issues, and can also be affected by diet, so a change in diet might make the pain, nausea less, but not go away.

These are foods that companies have modified the genes for. They are modified to have genes that resist pests, genes that have actual pesticides in the genes, genes to grow certain ways or be drought resistant. America has not banned these crops, despite growing evidence that they are not good for human consumption, but I believe they have been banned in the food supply in Europe, currently.

I had a blood allergy test, where they take vials of blood and then test the blood for certain components that indicate a reaction to certain foods, but even my doctor said that it's pretty inaccurate. If you have bad allergies, like the type that are life threatening, it does pretty well. But for low grade allergies, there are a lot of false negatives and false positives. Some of mine seem to be fine, some not so much, but many of the ones that tested positive for me also were making me feel awful, so I'm pretty comfortable avoiding those.

What food intolerance test did your dietician mention? I'm curious because there are only two I know of: for lactose intolerance and for fructose intolerance. There are a lot of factors that can make them inaccurate, I understand, yeah. However, any OTHER kind of intolerance, to my knowledge, there are no tests for whatsoever, like issues with annatto. None for chemical sensitivities, either, usually. :-(

That pretty much what I thought too at first, you know? Then I found out...gluten is everywhere. Mulch and compost often has gluten in it in the fields. Wheat is often a rotation crop with many of the gluten free grains and can cc it from the ground up. They share harvesters, shipping trucks, and often mills with gluten grains that are rarely cleaned enough to avoid all contamination. So that alone is enough to contaminate gluten free ingredients before they even get to the gluten free factory that process them. There is also some gluten in many soaps, including sometimes the ones that are cleaning the machines that process the gluten free foods. It's usually a gluten derived ingredient rather than wheat itself, but all those little touches of gluten sometimes add up to enough contamination for it to be problematic, sadly.

Gluten derived ingredients that have low enough levels of gluten that they are below 20ppm can be used, but sometimes, there are so many of them that it can become an issue, too.

If you're contacting companies, some questions that may be of use are if they test their gluten free products for gluten levels, and if they do, what is the gluten detection level for the test they are using. Often, they will say 'no detectable gluten' left after processing. That's not the same as none, and how much it is depends on what the detection level of the test is.

And yeah - all the research becomes a bit of a pain in the butt at times, I'll be honest. But one gets used to it, I think, and after a while, you've called all the companies so it's not so hard to call one every once in a while.

Hi again,

I didn't write down where the products came from etc , my dietician said I didn't need too. But I always eat the same foods from the same companies so could easily get the list of ingriedents from every item in the food diary. I really don't think my dietician will find anything though lol.

I haven't really fasted for long only a few hours or overnight before some tests.

My Gp doctor said I could maybe see someone who did sensitivities the doctor is a private doctor though , and I can't really afford to see that doctor especially as my sister sae him and he wasn't very helpful .

My doctor tested for bacterial gut infections H. pylori a few times and said that wasn't the problem.

This is the food intolorence site http://www.yorktest.com/ . I found them at an allergy show last year . But apparently the tests are not accurate , bu t the website seems to have positive reviews.

I will have to ask the companies about CC.

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What you could do is eat a diet of produce and meat. Keep track of what you eat and how you feel. Don't even use any spices at first. Drink only water. Keep it simple with just a few foods to start. After you are feeling good, add only one new food per week. That should result in a safe diet and you will know what you can and can't eat. When you are ready to add processed foods, do it one new thing per week and keep tract of the company.

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