Refractory Celiac Disease

[T.H.]

I'm sitting here wondering if it's just me or if anyone else is questioning the way doctors are dealing with refractory celiac disease.

For example, take a look at this article, on a 'study suggest[ing] that more patients with celiac disease may stop responding to their gluten-free diets'

Open Original Shared Link

The doctor quoted in the article mentions that patients with refractory celiac disease can "have inapparent gluten ingestion."

And then he says this:

"...the standard response for refractory disease is to revisit the patient's gluten-free diet and advocate for stricter adherence. If dietary adherence to the diet is clearly not the issue, "then move on to looking for other causes on nonresponsiveness...." (they ended up using thiopurine to help with this problem in patients.)

I look at this and wonder if there is a problem between what doctors think and what reality is that is affecting our health.

After all, for most of us, the gluten free diets that we are supposed to have stricter adherence to are NOT, in actual fact, gluten free. Every last one of us has 'gluten ingestion,' apparent or not, on the recommended gluten-free diet. Heck, gluten free isn't even used as a medical term for those of us buying gluten-free food. It's a political or legal one. And personally, I don't believe that businesses won't be doing their best to persuade committees in charge of such things that the more-expensive-to-test-for levels of gluten, a.k.a the lowest possible levels, are bad for business.

Finding 100% gluten free food in our society feels next to impossible, at times.

So I have to ponder over how many doctors are aware of just how much gluten their patients are likely to consume on a typical gluten-free diet. Do some of them actually think there is NO gluten in their patients' food?

I think about this a lot recently based on my own family's experience. My father went gluten free years ago after a celiac diagnosis, but the past while he has been feeling worse, the way he used to feel on gluten. My daughter and I, since diagnosis, react to gluten like we never did before. We've experimented and discovered that unless I stay on a <5ppm gluten diet and she stays on a <10ppm gluten diet, then we're both still sick all the time.

You wouldn't believe how hard that is.

But the point to all this, I suppose, is that I wonder very seriously about the tests and studies that are being done for those of us with refractory celiac disease. The few I've spoken to who were diagnosed with this were told to adhere strictly to their diet (but not urged to try and eat even less gluten) and then eventually put on steroids when that didn't work. And I can't help but think: what if it's simply that they are more sensitive to gluten than the average celiac? What if that's all it is for a lot of us?

Does this sound in any way like it might be a reasonable possibility to anyone else, or am I grasping at straws here? I just can't help think that the possibility exists that refractory celiac might, for some of us, be nothing more than celiac disease that is reactive to lower levels of gluten than the food industry and the government have decided to call 'gluten free.' It's nothing more than my own observation of a few select individuals, although I saw one study on this, but as I can't find it at this point I can't add anything from that.

Has anyone else had experience with refractory celiac disease? What has your experience been? Have your doctors tried to help you get on the least gluten diet possible, or did they go for the drugs instead? Has either approach helped you? Both?

I am curious for a number of reasons, but honestly, with my father coming up for his check-up soon and his looking like his celiac disease may fall into this category, I'm trying to find out all the information I can to help him out!

[plumbago]

I'm sitting here wondering if it's just me or if anyone else is questioning the way doctors are dealing with refractory celiac disease.

For example, take a look at this article, on a 'study suggest[ing] that more patients with celiac disease may stop responding to their gluten-free diets'

Open Original Shared Link

The doctor quoted in the article mentions that patients with refractory celiac disease can "have inapparent gluten ingestion."

And then he says this:

"...the standard response for refractory disease is to revisit the patient's gluten-free diet and advocate for stricter adherence. If dietary adherence to the diet is clearly not the issue, "then move on to looking for other causes on nonresponsiveness...." (they ended up using thiopurine to help with this problem in patients.)

I look at this and wonder if there is a problem between what doctors think and what reality is that is affecting our health.

After all, for most of us, the gluten free diets that we are supposed to have stricter adherence to are NOT, in actual fact, gluten free. Every last one of us has 'gluten ingestion,' apparent or not, on the recommended gluten-free diet. Heck, gluten free isn't even used as a medical term for those of us buying gluten-free food. It's a political or legal one. And personally, I don't believe that businesses won't be doing their best to persuade committees in charge of such things that the more-expensive-to-test-for levels of gluten, a.k.a the lowest possible levels, are bad for business.

Finding 100% gluten free food in our society feels next to impossible, at times.

So I have to ponder over how many doctors are aware of just how much gluten their patients are likely to consume on a typical gluten-free diet. Do some of them actually think there is NO gluten in their patients' food?

I think about this a lot recently based on my own family's experience. My father went gluten free years ago after a celiac diagnosis, but the past while he has been feeling worse, the way he used to feel on gluten. My daughter and I, since diagnosis, react to gluten like we never did before. We've experimented and discovered that unless I stay on a <5ppm gluten diet and she stays on a <10ppm gluten diet, then we're both still sick all the time.

You wouldn't believe how hard that is.

But the point to all this, I suppose, is that I wonder very seriously about the tests and studies that are being done for those of us with refractory celiac disease. The few I've spoken to who were diagnosed with this were told to adhere strictly to their diet (but not urged to try and eat even less gluten) and then eventually put on steroids when that didn't work. And I can't help but think: what if it's simply that they are more sensitive to gluten than the average celiac? What if that's all it is for a lot of us?

Does this sound in any way like it might be a reasonable possibility to anyone else, or am I grasping at straws here? I just can't help think that the possibility exists that refractory celiac might, for some of us, be nothing more than celiac disease that is reactive to lower levels of gluten than the food industry and the government have decided to call 'gluten free.' It's nothing more than my own observation of a few select individuals, although I saw one study on this, but as I can't find it at this point I can't add anything from that.

Has anyone else had experience with refractory celiac disease? What has your experience been? Have your doctors tried to help you get on the least gluten diet possible, or did they go for the drugs instead? Has either approach helped you? Both?

I am curious for a number of reasons, but honestly, with my father coming up for his check-up soon and his looking like his celiac disease may fall into this category, I'm trying to find out all the information I can to help him out!

You're so nice to be advocating and working for your dad like you are, Shauna.

My own opinion dealing with two primary care physicians and a gastroenterologist is that no, doctors are hardly thorough in either their evaluation of a patient's diet or an examination of just how much gluten is in our food. It is extremely discouraging. I have posted on another topic about whether I myself should go to the clinic in NYC.

I tried as hard as I could (I think) to be gluten free, but I think I've gotten cross contaminated. Beyond that, I agree - there is gluten in our food. So I am starting to conclude that the only way to avoid it is to seriously consider not eating anything other than meat, vegetables, and maybe rice. These packaged foods, I just don't know about them.

As for refractory Celiac disease, like many I'm sure, I live in dread of this! I was just diagnosed celiac disease in May, so I'm still learning about it, but ugh, I feel sorry for anyone with this diagnosis. And no, I don't think doctors know enough about either celiac disease or RCD to consider it. Most drs' reactions to and knowledge of simple celiac disease are pretty darn general. It's frustrating.

I wish I could converse intelligently on whether or not those with RCD are more sensitive to gluten, but I cannot.

Good luck.

[cassP]

T.H.- you make an EXCELLENT point.. i was just thinking about this 2 days ago. because i was eating Diamond Pecan/rice crackers... i had never had a reaction to them before.. but my right forearm was itchy for a good 24 hours. my right forearm is where i had an itch and some bumps that COULD have been DH.. but i was never really sure.. it wasnt as pronounced and identifiable as on my stomach..

but it sure did itch for a good day- and i thought "WOW.. maybe i AM sensitive to cc"... i looked at the box- and it's measured at <20ppm.

i also have had a lot of corn byproducts & dairy lately- and the past few days, ive had a bit more cramping, and heaviness in my LOWER abdomen... (even if they dont act exactly like gluten- ive read A LOT about people saying that corn and dairy has delayed healing from gluten or even exsacerbated DH. there's also a possibility that gluten can be found in grain fed dairy.

so ya- i think you raise a very good point- and if we eat too many "gluten free" breads & cookies- all those <20ppm start adding up.

i think i need to get back to more natural foods...

[dilettantesteph]

The celiac specialist in my GI group has stated that he believes that refractory celiac disease comes from gluten in the diet and that some celiacs are sensitive to lower levels of gluten than others, just as you stated. Some doctors are not dropping the ball. The celiac community may be somewhat behind. We should be requesting more care in the preparation of gluten free foods.

[rdunbar]

When I was researching dermatitas herpetiformis, I recall seeing some statistic about how a small percentage of people with DH get no relief from a gluten free diet.

Of course, I was horrified. then I thought that this percentage of ppl could be accounted for as the ppl who didn't completely adhere to the diet, or that thier food was slightly tainted w gluten.

Technically, if you are eating packaged "gluten free" products, you are ingesting gluten, albeit, tiny tiny amounts, yet still enough to trigger the immune response.

I've been eating just veggies, meat, and fruit.

I just hope no gluten can find it's way through the skin of a sweet potato!

[Marz]

I'm sure that's exactly the case - why else would a celiac's intestine continue to not heal after being completely gluten-free?

I think some people react to other grains/substances in a inflammatory manner (soy and casein most definitely), but very little research is being done on this. Could refractory disease also be caused by this?

I find it extremely frustrating that we can't trust a gluten-free label. And that our "gluten-free" flours are contaminated because wheat/rye/barley crops are so ubiquitous. How difficult is it really to keep the gluten grains separate? I guess they can't justify the expense of having separate machinary, storage, transport etc, and that cleaning everything between harvesting is "good enough" for most?

[mushroom]

I noticed a different color in my rice last night as I was pouring into my measuring cup; extracted that piece and looked at it - WHEAT!! So yes, the contamination is real. That being said, I do believe (with the number of things that create problems for me - and corn gives the same response as gluten) that people may react to other things besides gluten in a way that is harmful to their guts. Whether it would rise to the level of refractory sprue I do not know, and I do not even know if anyone is researching it.

[cassP]

I noticed a different color in my rice last night as I was pouring into my measuring cup; extracted that piece and looked at it - WHEAT!! So yes, the contamination is real.

EWWWW that is nasty.. this is all like a horror movie for us.. gross

PS- also someone posted on here the other day- that some farms rotate the crops on the same field- and usually do this with Wheat, Soy, and Corn... ewww

[YoloGx]

EWWWW that is nasty.. this is all like a horror movie for us.. gross

PS- also someone posted on here the other day- that some farms rotate the crops on the same field- and usually do this with Wheat, Soy, and Corn... ewww

I agree--its a mess. If I eat brown rice I wash and rinse it about four or five time. It seems to help but not really enough. I don't get glutened strictly speaking but I do get itchy and flaky skin in my ears and nethers. I also however seem to be allergic to fruit and sugars and vitamin C, but that is another story.

I have found doctors to be of very limited value in these matters. They just don't seem to get it at all really. Its kind of scary. My brother for instance is in the hospital after a bad fall. I'll have to talk to them about his gluten-free diet once he starts eating. For now he's on drip. Fortunately he's not as sensitive as I am, however hospital food is really one of the worst I hear concerning CC.

There is no way I would accept taking drugs to deal with so called refractory gluten sensitivity. Who knows what else the drugs would do to one's system. Have the docs even bothered to try and figure that out? Not likely. To me it seems much better to just eat simply and avoid grains entirely despite how at times limiting that seems...

The problem with celiac as far as I can figure it is that our AMA system is based on treating symptoms rather than figuring out causes--and celiac and related sensitivities are all about dealing with causes.

Bea

[Mari]

By the time I was diagnosed at age 70 I had obvious sprue and in the last 5 years gluten-free the sprue has at times gotten better but it always returns. This may be due to inadvertant glutening but sometimes I cannot figure out the source of the contamination. The general health of my digestive system seems to be partly responsible, for when I get bacterial and yeast overgrowths the sprue increases. When my liver is not producing sufficient bile or when a bacterial overgrowth is metablolizing my bile the sprue increases. A sufficient supply of bile is necessary to emulsify fats and oils so they can be digested and prepared for adsorbtion. In fact, it takes good chewing ability, sufficient stomach acids bile, and the secretion of adequate pancreatic enzymes to prepare fats/oils to be adsorbed. It is also important to not eat poly-saturated oils and fats because our bodies cannot use them. Tropical Sprue is caused by people in warm climates eating oils which have become saturated in the heat and these oils cling to the intestinal wall, hindering adsorbtion of fats and nutrients. I've seen no studies it may be best to protect ourselves from this build up of undaturated fats on an already damaged small intestion. Refrigerating food oils and not cooking olive oil at high temperatures are 2 ways to help preserve the unsaturated oils.

I think that genetics is important, not only the HLA-DQ gene with it's 2 alleles (one from each parent) but all of the 14 genes associated with gluten sensitivity. Most of us have different combinations of all these 14 genes. Now that the scientists have been able to describe the gene products of the DQ gene they are studying the closely associated HLA-DR and HLA-B genes which may deepen the understanding of gluten sensitivity. The various combinations of DQ alleles leads to different level of gluten fragment binding that affects the severity of the problem and the risk of getting the problem.

[Kim27]

How do you found out how many PPM of gluten are in a gluten-free product???

[Marilyn R]

By the time I was diagnosed at age 70 I had obvious sprue and in the last 5 years gluten-free the sprue has at times gotten better but it always returns. This may be due to inadvertant glutening but sometimes I cannot figure out the source of the contamination. The general health of my digestive system seems to be partly responsible, for when I get bacterial and yeast overgrowths the sprue increases. When my liver is not producing sufficient bile or when a bacterial overgrowth is metablolizing my bile the sprue increases. A sufficient supply of bile is necessary to emulsify fats and oils so they can be digested and prepared for adsorbtion. In fact, it takes good chewing ability, sufficient stomach acids bile, and the secretion of adequate pancreatic enzymes to prepare fats/oils to be adsorbed. It is also important to not eat poly-saturated oils and fats because our bodies cannot use them. Tropical Sprue is caused by people in warm climates eating oils which have become saturated in the heat and these oils cling to the intestinal wall, hindering adsorbtion of fats and nutrients. I've seen no studies it may be best to protect ourselves from this build up of undaturated fats on an already damaged small intestion. Refrigerating food oils and not cooking olive oil at high temperatures are 2 ways to help preserve the unsaturated oils.

I think that genetics is important, not only the HLA-DQ gene with it's 2 alleles (one from each parent) but all of the 14 genes associated with gluten sensitivity. Most of us have different combinations of all these 14 genes. Now that the scientists have been able to describe the gene products of the DQ gene they are studying the closely associated HLA-DR and HLA-B genes which may deepen the understanding of gluten sensitivity. The various combinations of DQ alleles leads to different level of gluten fragment binding that affects the severity of the problem and the risk of getting the problem.

Thank you for your post. How do I get my physician (I'm seeing several ... gastro, rheumy, allergist, endo, PCP to order the genetic testing?

The rheumy prescribed a nasty med that was originally produced to stop seizures. I'm not going down that road...(read about the side effects.)

[Coolclimates]

I've heard of refractory and non responsive Celiac Disease. Are they the same thing or different things? I don't know what the difference is between them.

[Roda]

This was where I was last August. My doc wanted to put me on steroids. He didn't call it nonresponsive or refractory, just that it can "flare up" at times. If it isn't nonresponsive or refractory then why recommend steroids? Anyway, I refused and eliminated more things and got better. I'm having issues again, not near as bad as last year, so I've got to eliminate more things that I didn't before. I won't go on steriods unless I have no other option!! I'm not even going to go back to the gi at this point because I know that he will want to put me on the steroids. NOPE! I'll try it my way and if I don't see any improvement by Feb. (have a f/u with PCP for an elevated RF and will check and see if my iron and ferritin are going back up since they have gone down since June) then I will revisit the GI. I have already started to pinpoint some things to eliminate to start with.

[lovegrov]

plumago, there is absolutely no reason whatsoever to live in dread of developing refractory sprue. The hard truth is that most people diagnosed with celiac improve and then live perfectly normal lives. Living your life in paranoia is no way to live.

richard

[Coolclimates]

I'm beginning to worry that I might have this. I was diagnosed with celiac disease in May 2010. Since then, I've been on the gluten-free diet. However, the last few blood tests I've gotten have shown that my antibodies are still very high. In fact, this latest blood test indicated that my antibodies were even higher than they were 6 months ago! I almost never eat out and I'm very careful with the issue of cross contamination. I just don't know why I'm not responding. One of the challenges with me is that if I get glutened, I have no obvious symptoms. So it's possible that I might be continuing to ingest small amounts of gluten by accident. I will be getting a second endoscopy in a few weeks.

[T.H.]

How do you found out how many PPM of gluten are in a gluten-free product???

Either it will be listed on the package, or you have to contact the company and ask if they test their gluten-free food, and if they do, what their maximum allowed gluten is for their product during testing.

ppm or parts per million is what you're looking for, obviously. If they say 'our product doesn't have a maximum allowed gluten, it's gluten free...then you're talking to someone who doesn't know anything about their product, sadly.

[dilettantesteph]

I'm beginning to worry that I might have this. I was diagnosed with celiac disease in May 2010. Since then, I've been on the gluten-free diet. However, the last few blood tests I've gotten have shown that my antibodies are still very high. In fact, this latest blood test indicated that my antibodies were even higher than they were 6 months ago! I almost never eat out and I'm very careful with the issue of cross contamination. I just don't know why I'm not responding. One of the challenges with me is that if I get glutened, I have no obvious symptoms. So it's possible that I might be continuing to ingest small amounts of gluten by accident. I will be getting a second endoscopy in a few weeks.

According to Dr. Peter Green of the Celiac Disease Center of Columbia University, if you have the antibodies, you are still eating gluten. This does not mean that you have refractory sprue, it means that you need to clean up your diet.

Dr. Peter Green video:

You need to look at the things that super sensitive celiacs have to do to not get sick.

We are like your canaries in the coal mine.

[GlutenDude]

Naturally, if the doctors can't find a cause, it must be the patient's fault. This kind of thinking infuriates me. I'm five years in, and still have more bad days than good. And while it's possible I've gotten cross contaminated here and there, I can't tell you how ridiculously careful I am. My own silverware, counter top, etc. To insinuate that it must be my fault is lazy and insulting.

[psawyer]

How do you found out how many PPM of gluten are in a gluten-free product???

You can't. It won't be listed on the package. At best, you will find the number of ppm they test for. The amount actually present is less, usually much less.

[Gemini]

I'm beginning to worry that I might have this. I was diagnosed with celiac disease in May 2010. Since then, I've been on the gluten-free diet. However, the last few blood tests I've gotten have shown that my antibodies are still very high. In fact, this latest blood test indicated that my antibodies were even higher than they were 6 months ago! I almost never eat out and I'm very careful with the issue of cross contamination. I just don't know why I'm not responding. One of the challenges with me is that if I get glutened, I have no obvious symptoms. So it's possible that I might be continuing to ingest small amounts of gluten by accident. I will be getting a second endoscopy in a few weeks.

Coolclimates.....are the doctors testing your tTg or the AGA IgA/IgG numbers? I think the updated test to this is the DGP. I ask because using the tTg as a check of dietary compliance is incorrect and they need to repeat the AGA or DGP tests for that. tTg can be elevated from other autoimmune conditions besides Celiac so if they are using the tTg test, you could have another autoimmune condition going on. Doctors make this mistake all the time.

If you are being that careful with your diet, then I highly doubt you are being cc'd. Sounds like you know what you are doing. I agree with Richard in that the vast majority of Celiacs who learn the diet well, will go on to lead normal lives without any more complications/problems than those without Celiac. If the gluten-free food supplies were that contaminated, none of us would recover. I think where doctors drop the ball is checking for other food intolerances/issues that often plague Celiacs. They also miss the fact that the pancreas can be be partly atrophied from long term, undiagnosed Celiac and that may not improve, making total recovery difficult. I still have to use pancreatic enzymes with a meal that is rich in protein or fats but have healed well as far as Celiac goes. It did, however, take me 3 years, total time, to completely get rid of all symptoms.

[plumbago]

I'm beginning to worry that I might have this. I was diagnosed with celiac disease in May 2010. Since then, I've been on the gluten-free diet. However, the last few blood tests I've gotten have shown that my antibodies are still very high. In fact, this latest blood test indicated that my antibodies were even higher than they were 6 months ago! I almost never eat out and I'm very careful with the issue of cross contamination. I just don't know why I'm not responding. One of the challenges with me is that if I get glutened, I have no obvious symptoms. So it's possible that I might be continuing to ingest small amounts of gluten by accident. I will be getting a second endoscopy in a few weeks.

Please let us know how it turns out! I was diagnosed at the same time you were. I'm putting off the second endoscopy, though it's been recommended.

Plumbago

[Coolclimates]

these were my results:

TgG IgA 53 (20 or less is normal)

Deam gliadin IgA Ab 83 (20 or less is normal)

these numbers are actually slightly higher than they were in April 2011, when I got my last blood tests.

I'm also wondering if it could be something different than celiac disease all together. But all 4 of my blood tests have showed elevated antibodies and the only endoscopy I've had showed a lot of blunting.

I am extremely careful in what I eat. I almost never eat out anymore and I check everything very carefully. I even try to avoid products that claim that they are gluten-free but produced in facilities that manufacture gluten.

this is just SO frustrating

[Gemini]

these were my results:

TgG IgA 53 (20 or less is normal)

Deam gliadin IgA Ab 83 (20 or less is normal)

these numbers are actually slightly higher than they were in April 2011, when I got my last blood tests.

I'm also wondering if it could be something different than celiac disease all together. But all 4 of my blood tests have showed elevated antibodies and the only endoscopy I've had showed a lot of blunting.

I am extremely careful in what I eat. I almost never eat out anymore and I check everything very carefully. I even try to avoid products that claim that they are gluten-free but produced in facilities that manufacture gluten.

this is just SO frustrating

I am so sorry that you are having these issues still. Yes, it can all be very frustrating and depressing. Maybe there is something else going on or you just are one of those who will take a very long time to heal. Many Celiacs also have a problem with microscopic colitis. Are you still having gastro symptoms as the hallmark of colitis is recurring diarrhea.

I work with someone who has has multiple autoimmune/ GI diseases and the docs had to put him on strong medication to suppress his immune system to let him heal. A tough thing to have to do but it's working and he's healing and gaining weight. They will wean him off over time.

Your tTg is elevated still so that could be a symptom of another AI disease brewing, which may complicate healing. You have not been gluten free all that long..certainly within the time frame of still healing. I hope you can get to the bottom of this and feel better. Keep in touch on the forum because we're the only ones who understand your pain. I am interested to hear what your doctors have to say about this.

[weluvgators]

I am extremely careful in what I eat. I almost never eat out anymore and I check everything very carefully. I even try to avoid products that claim that they are gluten-free but produced in facilities that manufacture gluten.

this is just SO frustrating

Have you checked all of your medicines? Do you have a shared kitchen? And have you reviewed toiletries? Those are a few things that come to mind as possible next steps in looking for potential gluten contamination issues beyond what you mentioned. I hope that you find answers soon! I would review medicines, kitchen status and toiletries with a more critical eye to any changes that have occurred in the last 6 months too.