Question About Refractory Celiac Sprue

[solisspirit]

Someone on the celiac support group I'm a part of told me that her dad suffers from refractory celiac sprue (where villi refuses to grow back), and he had the same symptoms I had with the same worries. I asked her what they treat people with this with and she said steroids, the same thing they treat microscopic colitis with. Does anyone here know more about this refractory celiac sprue and if it can be healed with treatment? Also, what relation does it have to microscopic colitis?

[Gabes-Apg]

A quick google search brought up a medscape article,

It states "steroids are often used in RCD, (albeit with little objective evidence of benefit) "

Any person with villi damage, whether it be ibs, mc, celiac, crohns, will only get healing of the villi if ALL triggers/irritants are removed...
As many know here, the removal of gluten is not the only way to heal.

While ever there is hesitance by medical professionals to acknowledge ingredients like soy, yeast, dairy etc etc to be a major trigger ( in some cases as bad as gluten) and the existence of mastcell/ histamine reactions, the villi will not heal.

Rather than investigate the root cause, steroids will mask/minimise the symptoms and allow people to soldier on!!! (And beef up the profits for big pharma)

[tex]

Research shows that most cases of refractory sprue are caused by gluten in the diet — either poor diet compliance, cross-contamination in the diet, cheating on the diet, etc. Most celiacs don't actually understand how careful they must be with their diet, and they ingest trace amounts of gluten, either intentionally, or unknowingly. If they eat processed foods, they are eating at least trace amounts of gluten.

One other possibility is old age. The older we get, the slower our gut heals. Kids heal completely in 1 to 3 years. Young adults take 3 to 5 years to heal. Older adults take longer to heal, and many never heal completely. It's possible that in some cases of older adults, where their intestines have been accruing damage for decades, healing might be so slow as to be insignificant.

Gabes is quite correct. Treating celiac disease with corticosteroids might suppress the clinical symptoms of the patient, but it will not encourage healing of the intestines. Corticosteroids actually delay healing.

Poor healing is very common among celiacs. Consider the article describing a study at the link below:

Histology was normal in only 21%. The remainder had villous atrophy (69% partial, 10% total).

Duodenal histology in patients with celiac disease after treatment with a gluten-free diet.

As I mentioned above, if her father is eating processed foods, he is still ingesting gluten. She should encourage her father to adopt the paleo diet, if she wants to see his gut heal.

A study that measured contamination by gluten tested 22 single-ingredient inherently gluten-free grains, seeds and flours, and found 32% of these products contained >20 ppm gluten and one product contained 2,925 ppm of gluten. The products tested that were positive for gluten included soy, millet, buckwheat, rice and sorghum flour. This is sufficient gluten to cause on-going symptoms in many celiac disease individuals.[1]

Non Responsive and Refractory Celiac Disease Study: A paleo type diet gives 100% remission for most

Also, what relation does it have to microscopic colitis?

You really need to read either my book, or at least the chapter that I sent you as an email attachment several months ago. I sent you that chapter so that we wouldn't have to spend so much time trying to explain all that to you here on the board. This is the second time I've reminded you to read it. Why on earth won't you simply read it, instead of wandering in circles on the internet? Try it — it's not so bad. Trust me, that chapter won't bite you. And if you still have any questions after reading it, we'll be more than happy to try to answer them.

Tex

[solisspirit]

I want to read it, trust me, and I will get around to it. I'm just coming closer to seeing my doctor again and getting my test that I need so bad, and I'm just trying to prepare myself mentally for possible outcomes. The reason I like this site so much is that you guys are knowledgeable on different "outcomes", whereas if I go to a celiac forum they only really know about that.

What really bothered me is when I started thinking to myself, "okay. so, what if villi doesn't want to heal back? then what?". I need to be mentally prepared for these possible outcomes so I know there's answers, and what they are. Sometimes I feel like I'm alone in this, and it helps to know more about everything so I can understand my options.

Needless to say, this person I talked to said her dad had pale stools. Again, I don't. And since I started going GF and SF, my stool has remained solid and consistent. I don't know what this means, but it seems fair to say that progress is a factor.

I really wish you guys knew just how much pressure I'm under. I have two kids, a fiancee, I'm in college getting my degree in physics, and I'm having to have this dark cloud over my head constantly going "will I be okay?", "will I heal?"..and it's beyond frustrating. The more I know, the more I feel like I can be prepared. Moreover, it helps to know even if something is a possibility that there is a way to heal. When I hear that healing isn't possible, I get scared.

[Gabes-Apg]

We don't get it????

Excuse me, there are hundreds of people on this forum that have had to 'live life' with MC. with way way more than that happening.
Life is 10% what happens to you and 90% how you react....




Long story short, YOUR ability to heal is reliant on what YOU DO....
Not the doctor, not the meds, not the various medical articles, not postponing looking after yourself until timing suits your diary....

You want to heal? Wake up to reality, reading that chapter will take all of 6 minutes.....
(About the same time as you probably spend sitting on the toilet each day)

You need to get mentally prepared to looking after yourself.... Take 10 mins every day to start figuring out your mc management plan based on what is happening now. Instead of worrying about things that may or may not happen, Otherwise you won't be well enough to study, and/orlook after your kids.

[solisspirit]

Gabes, you misunderstood what I was saying. And, no, no one really understands anyone's particular situation. We can all agree and have common ground, but the specifics make us different. That is what's great about us as people; we're equally different just as much as we are the same. I understand reading that aforementioned chapter will help, but I was under the impression it was a much larger book and would take me weeks to read (medical books normally are very large). I've done, and continue study the possible causes of my problem, and I've done this for some time. I've been the victim of insurance rejection, poverty, and disregard. I have two kids that I take care of, I work, and go to school. And it's all of these that keep me from being deeply depressed about it all. My circumstances, though maybe not as severe medically as some I've heard, are just as hard in other ways. This is what I meant by my statement. Also, the statement that I need to get mentally prepared to take care of myself is the same I've heard from doctors that had completely no idea of my circumstances and reiterates exactly what I mean. You have no idea how much I've done to try and get better, in addition to the rejection and despair I've endured after being told twice already that my insurance would not pay for my procedures and that I'd have to magically come up with $800 dollars to cover my test. I've, on my own account and choice, been on diets, Ensure's, vitamins, and alternative supplements for digestive enzymes because the ones my original GI told me to take were about $900 dollars a month without insurance. So, I'm supposed to be on those because my doctor, at the time, didn't know what my problem was and ordered every test in the book. My new GI only ordered the upper and lower scopes and wrote on the paperwork to the nurses that he did not think it was Crohn's or Ulcerative Colitis. I tested negative for Celiac a year and a half ago from blood test, and I pretty much can do nothing else until my insurance from my wife becomes active. I've sought every way possible to do the best I can, and this forum and the many others I am on help me in that process. I'm sorry if I annoy anyone.

[Gabes-Apg]

You don't need insurance to change your diet, and follow the eating plan suggested if you want the symptoms to reduce.

As per the post at the top of this section, attn newbies or anyone struggling.
That is a 5 minute summary of the key things you need to know and can start doing.

Most IBD's respond well to gluten free, low sugar, minimal dairy eating plan
It's not just a mc thing..

Additional to gluten, Based on the learnings of this group, an estimated 65% can not handle eggs, 65% can not handle soy. Most can not handle fibre.

I am sorry that you got lead down the path of expensive supplements etc,
And that there are insurance issues for the procedures. And doctors who don't understand. More reason to take control, it is time to get up, dust yourself off, forget the past, follow the clear path of 1000 or so people that have done the hard work, and can provide valuable, inexpensive methods of getting your mc managed.

[solisspirit]

That's one of the problems. I don't know if I have mc. I don't know what I have because I have not had my tests yet. However, based on my symptoms many here have suggested I very well may have mc. As for eggs, I don't have any problem, but everything else you mentioned was right on. Soy is the worst for me, and I don't always remember this being the case up until the last year or so. I was just talking to someone on the celiac forum and they told be though it sounds counter-intuitive to take a fiber supplement, they suggested it does help (though I objected mentally). Gluten exposure, usually pizza, causes me to have a metallic taste, but only when I consume gluten. Someone told me this was because of it was a allergy reaction most likely to the gluten. I have no bleeding, no pale stools, and my stools sinks like it should. However, I do have fat malabsorption, which is a test I did get, and all my other blood levels looked fine. Last I took this test was about 9 months ago. Since I've started the GF and SF diet my stool has remained solid, though still small like the size of nuggets, and I have no liquid "D" anymore. I've been on the diet now for about a month, maybe a little longer. I have no pain either.

[JFR]

I don't have a diagnosis of MC either but my symptoms were both severe and matched up with what I read on this forum so I decided to treat myself as if I had MC. That's what's great about dietary changes as a treatment. You can implement them on your own without needing a doctor.. Our circumstances are certainly not the same and I am not saying that you shouldn't try for a definitive diagnosis when you can afford to do so, but even without a diagnosis and without doctor to give advice you can continue to implement dietary changes, making sure you are diligent about avoiding the foods you know you are sensitive to and the foods you think you might be sensitive to 100%. It sounds like you have seen progress with the dietary changes you have made. Try to be patient. I am not 100% either but I stick with a restricted diet, hope that things continue to improve, but realize that learning to deal with the hand I am dealt is part of the process of healing. Things may never be "normal" for me, but I can't control that. I can only do all I can to live with things as they are. Keeping my diet restricted (gf, df, sf, ef, low fiber among others) is the difference between being stuck in my house not far from a bathroom and being able to go out. We all have stuff to deal with and stuff to learn. The high levels of anxiety you experience cannot be helping you. If you can learn to lessen your anxiety that might help even more than any doctor or diagnosis.

Jean

[solisspirit]

JFR, thank you.

But, please elaborate on what all the abbreviations mean. I know what "gf" is, but the others I'm not so sure of.

[JFR]

JFR, thank you.

But, please elaborate on what all the abbreviations mean. I know what "gf" is, but the others I'm not so sure of.

Gluten free, dairy free, soy free and egg free, the top 4 sensitivities that people are likely to have.

Jean

[tex]

Needless to say, this person I talked to said her dad had pale stools.

Pale stools from a celiac are a classic sign of gluten in the diet. Her dad is eating a diet contaminated with gluten, and he will never heal as long as he continues to eat gluten.

The high levels of anxiety you experience cannot be helping you. If you can learn to lessen your anxiety that might help even more than any doctor or diagnosis.

I agree with that 100 %. Stress alone is enough to keep an MC reaction going indefinitely.

Incidentally, while the book is about 315 pages, that chapter that I emailed you is only 14 pages, and they are not long pages.

Tex

[sunny]

Soil spirit... The first thing I did when I came here with questions was to read over & over all the free material for newbies, then I got Tex's book & read it every chance I got. If you have a chapter sent to you, you can print it out, put it on your bathroom counter & read a page while you brush your teeth or while you are on the throne. You can put the copy by your stove & read while you cook, or boil water for tea or do dishes. You can read it at stop signs when you drive. I've read the book twice by employing these tactics.
It's very doable. But to prepare for the worst seems premature. Plus it will increase your stress.
Changing your diet is relatively easy and can be instructive.
Sunny