tennisman

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

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: Open Original Shared Link

Open Original Shared Link

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 ?

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

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.

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 ?

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

That's good

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.

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

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.

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 .

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.

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!!

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.

Hi Tennisman,

Soy is in a ton of processed foods, including many gluten-free food products. It is also used in frying chips and things and in vegetable oil blends, margarines, etc etc etc. Just about anything processed is a likely source of soy, soy oil, soy lectithin, or soy protein.

If you do some searching on soy, intestine, rat you will find some reasearch on it. There was also an article not too long ago about infants with casein intolerance being switched to soy milk formula. Many of them then developed additional food allergies.

There is so much negative information about soy available it is not hard to find at all. Especially negative is that soy seems to affect intestinal cell development in infant rats. No proof that happens in humans that I know of, but it sure seems possible.

Another well known bad thing about soy is it's affect on the thyroid gland function. It is a big no - no there.

Of course the fact that it contains chemicals that mimmick estrogen is not good either. Who needs their internal hormone balance thrown out of whack every day by eating foods containing soy? They sell soy pills to women to relieve menopause symptoms in vitamin shops.

It's just plain bad stuff for you.

Thanks for the information on soy I have checked gluten free processed food and the other foods you mentioned and I can't find any soy in any of them . I did find soya flour in some biscuits , on yahoo it says soya and soy are the same is that right ?

Also is soy ever a hidden ingredient or does it have to be named ?

I remember one celiac doctor saying that the vast majority of "refractory" cases she saw were either bacterial overgrowth or failure to eliminate all gluten.

richard

I have read that a lot not eliminating all gluten, but I have also read your stomach can respond well to a gluten free diet and than Refractory can start up a few years after.

I feel the word "refractory" is thrown out too easily by doctors who are willing to give up long before their patients are

It's the complete opposite for me lol.I have seen many stomach doctor's as my proper stomach doctor left so I have had stand in doctor for the last few years and this is the 1st time I have heard a doctor mention Refractory.

Does anyone have more info on this? I know about the possible CC in grains, but I'm wondering how legit Cyrex labs and the idea of cross-reactivity is? Does anyone know anything about the research? I'm also aware of Dr. Osborne that advocated grain free (Open Original Shared Link), but I'm not finding more conclusive evidence. At this point I'm willing to try just about anything, but I hate that his site is too sales-pitchy.

If in fact this is true - that some (many?) people with Celiac cross-react to other foods, it needs to be shouted from the rooftops. But I want more info! Anyone??

For the OP, the word refractory is being thrown around by my doctor, too... but I'm not done looking for other answers. There are people in this community that were sick for years, figured out what else they needed to do (often eliminate foods) and got better. So, if this is indeed a possibility, I for one would like to know!

This is the 1st I have ever had a doctor mention Refractory and this is also the 1st doctor I have seen who seems interested in helping me . My villi still hasn't healed and I have had celiac disease for 8 years and have followed my diet 100 % . I could have a problem with cc processed foods as mentioned above . But otherwise I'm 99.9 % sure i'm not eating gluten. I have been working with a dietcian since last september and I have done many foods diary's and tried eliminating different foods and had no luck . My dietcian doesn't think food a certain food is causing the problem.

You might want to try eliminating soy also. Soy causes bad reactions for some of us.

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

Going back and reading what we said, I realized I left something out. Gads how I hate this brain fog...

The idea with refractory is that you might be ultra-sensitive. Brands like Udi's and Bob's do their best to get gluten-free grains but there is so much wheat in fields, silos, and trucks, that getting completely gluten-free grains is nearly impossible. Instead the gluten-free brands test and sell you food that is below 10 or 20 ppm. That 20 ppm may be enough to make you stay celiac on a diet that you think is gluten-free. There is the same problem with all processed and packaged food. There are usually gluten products in the facilities and trace cross-contamination is rather common. You get away from this by eating only whole foods. A banana, a hunk of broccoli, or a potato is guaranteed to be 100% gluten-free.

Cross reactions with milk, oats, coffee, or other foods can also make you stay celiac on a gluten-free diet. The article I linked explains that pretty well. So you want to rule those out by eliminating them from your diet.

That's interesting as my doctor's have always said my stomach is very sensitive . My Mum has celiac disease and she isn't as sensitive. With some cereal there is a little bit of gluten in but it's suppose to be safe amounts . If I eat it I get stomach pain but if my Mum eats it she is ok. In 2012 in england the 20 ppm is going to end and all products have to be 0 ppm I think. Most probably the processed foods are not good for me . I don't think I eat a lot but I bet if I wrote down all the processed foods I eat there will be more than I expect.

I'm going to read the article . How long would I need to be off milk , oats etc to ser if they helped me ? As I haven't had milk since end the start of march.

I second dropping any processed/packaged food even if it says gluten free. I had to do this after nearly 8 months trying to figure out why I developed new symptoms last year. My doc wanted to put me on steroids and I refused. I discovered I react terrible to any Bob's Red Mill gluten free products. Do you tolerate gluten free oats? I ask because I think this is part of the problem with the BRM for me. I don't tolerate gluten free oats(knew 7 mo. after went gluten free) but I never gave cc from them a thought until I started looking at things more closely. I don't even eat a lot of mainstream products anymore because of cc. I am getting over a glutening right now from having a weak moment and eating some cool ranch doritos. They bothered both my son and myself. I would first go the route and eat very clean and make everything from scratch first to see if there is any improvement. For me it took about three months with the help of creon to get back to normal.

It sounds like a good idea dropping processed foods . I'm not too keen on steroids either . I'm not sure about gluten free oats as I only really tried them last year I remember getting stomach pain after eating them but I was getting stomach pain after eating anything so it's difficult to tell. I'm sorry you were glutened hopefully you feel better soon . I am also confused about when i'm glutened I have always thought upset stomach told me I accidentally eat gluten. Maybe my stomach pain is a sign I have accidentally eaten gluten . It frustrates me as i'm always very good making sure I don't accidentally eat gluten and the whole time it could be the processed gluten-free products doing the damage . I will try cutting processed foods out.

Are you eating "gluten free" breads, crackers, and other grain products or only things like rice and potatoes? Processed foods that could be CC? Are you eating other foods that can cross-react like dairy? I also just recently learned that coffee can cross-react with celiac antibodies from this blog post.

Open Original Shared Link

The first thing I would try if my doctor said refractory would be to drop all processed foods, including the gluten free breads, pastas, and so forth. If you're reading labels it's a problem. The foods you need to eat don't have labels at all. Try switching to a diet of fresh fruits and vegetables, potatoes, rice you sift through for wheat grains, plain nuts, beans you sort and cook yourself, and raw meats you cook yourself. If it comes in a package or has a label, don't eat it. I know how much of a pain it is because I am sick right now and trying to do that myself but it beats drugs!

I would also drop dairy and (gasp) coffee. I don't know anything about the Cyrex labs mentioned in the blog, but perhaps you should look into their cross-reactivity testing before you go onto immunosuppressants.

I sometimes eat gluten free bread but not that much as it usually gives me stomach pain. I made my own bread the other day and my stomach was ok after that. Is gluten free flour ok ? I have been seeing a dietican and I have stopped drinking milk in march and stopped eating dairy for 2 weeks no real improvements in my stomach. I used to have a problem with dandruff in my hair but since I stopped drinking milk that has improved. Thanks for the link , I don't like coffee I never drink it, so it shouldn't be that.

My doctor said I could have Refractory but he is going to do some more tests etc .I already eat a lot of rice potatoes , meat , veg , fruit etc . The processed foods I eat is pasta and biscuits and bread I could cut them out. Also I eat processed microwave rice I guess it's better to cook my own . What about foods like canned tuna , sweetcorn etc ? Sounds like I will most probably have to cut a lot out. What about alcohol is that ok ? I drink cider I feel it helps my stomach

I will look at the link , and continue dairy free.

I had a situation once, like temporay IBS, Irritable Bowel Syndrome, I think hat is how you say it.

The doctors at the emergency room gave me some little antibioltic blue capsules. I was suppose to take them for 10 days. After the 5 th day, I got really sick and went back to the emergency room in an ambulance. After that, I produced a large amont of clear dark yellow liquid every time, I had a bowel movenment for a week or two. Then, that was followed by allot of blood in the stool. You could see all the blood in the bowl. It was scary. So, I went to the doctor's office. She told me it was a temporary bout of IBS. Two months later it was all gone, as soon as I stopped eating anything with gluten in it. I have had no bowel problems since, that time many years ago.

Your story sounds really scary I'm glad you are better now

Hi Tennisman,

I don't have refractory, but there have been people on the board with it. I think the treatment is similar to treatment for Crohn's disease, immuno-suppresant drugs. And a strictly 100% gluten-free diet of course.

Thanks for the reply GFinDC

I will research the immuno-suppresant drugs. I stick to my gluten free diet 100 % , but I guess I must be missing something somewhere i'm not sure how as I check ingredients about 10 times .

Does anyone have Refractory Celiac Disease ? My doctor thinks I may have it. Is it possible to fix it ?

I know this may sound a little out there to some people and i was hugely skeptical but i tried Hypnotherapy to help with my panic attacks, severe anxiety and that feeling of complete hopelessness. I was so suprised, i had a few sessions and i was fine, and when im feeling a bit low again i have one session or two as a pick me up.

Hypnotherapy seems like a great idea. I have tried a few Hypnotherapy mp3's they seem to help a little. I will look into it more , Thanks for the advice

I deal with anxiety and OCD (and celiac, blech!)

Exercise, a good counselor, medication (lots of gluten free ones) and relaxation therapy. I find that when I deal with the anxiety, etc. the celiac doesn't seem bad to have at all!

Thanks for the advice What is relaxation therapy ? It sounds great good