Refractory Celiac Disease

[tennisman]

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

[GFinDC]

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.

[tennisman]

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 .

[Karl Otto]

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.

[Skylark]

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.

[Roda]

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.

[Skylark]

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.

[tennisman]

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

[tennisman]

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.

[tennisman]

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.

[tennisman]

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.

[GFinDC]

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

[thleensd]

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.

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!

[mushroom]

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

[tennisman]

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 .

[tennisman]

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.

[tennisman]

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.

[lovegrov]

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

[tennisman]

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.

[GFinDC]

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

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.

[mushroom]

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

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!!

[ravenwoodglass]

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.

[dilettantesteph]

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.

[Skylark]

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!

For the OP, Tricia Thompson did the recent study on CC and grains. She found CC in 7 of 22 samples, and a downright frightening amount of gluten in one batch of soy flour.

Open Original Shared Link

You can talk to any of the gluten-free manufacturers. They are happy to tell you that they use a 10 or 20 ppm cutoff, and sometimes they sell foods that have some gluten below the cutoff. So you can easily be eating 3-5 ppm in your gluten-free bread or flour, which many celiacs can tolerate. 3 ppm might even show as zero on a test because it's at the low threshold. The trouble comes in if you're unfortunate enough to be one of the people who is ultra-sensitive. Then you get labeled refractory and given steroids instead of your doctor saying "Hey, why don't you get rid of that last 3ppm of gluten in processed gluten-free foods and stop eating anything that might be CC and see what happens?"

We do have people on this board who have to grind their own flour. They sift through the grains and remove the wheat berries and they DO get wheat berries in other

For thleensd: As far as cross-reactivity, here's what I've read and it's light. Thing is, doctors notice enough celiacs with casein sensitivity that they are designing studies to try to figure it out. The existence of the studies alone says something. i.e. nobody is trying to study cross-reactions of bananas and gluten (or any of thousands of other foods).

Many people with autoimmunity, including celiac, have antibodies to beta-casein.

Open Original Shared Link

Demonstration of mucosal reactivity from cow's milk in celiacs, where 50% of the celiacs tested reacted.

Open Original Shared Link

This one has very strong science but the abstract doesn't say much. They did western blots of serum pooled from 14 celiac people and found milk cross-reactivity. Sadly, because the serum was pooled they can't determine what % of people reacted.

Open Original Shared Link

I don't have anything on the coffee. The cross-reactivity studies Cyrex is doing are standard IgG and IgA antibody tests. They've chosen foods that they've identified as potential problems for celiacs. Your point is good that having IgG or IgA to a food doesn't necessarily mean it's a celiac cross-reaction. Those kinds of tests are most useful to guide an elimination diet. You remove the foods that come up positive and see how you feel.

[tennisman]

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 ?