Can Someone Give Me Information Regarding Rcd?

[CNV2855]

I'm sort of sinking into the possibility that I have refractory sprue. Not only have I not gotten better with over 3 1/2 years on the diet, but I had an experience a few weeks ago...

I was on 25mg/d of prednisone and it seemed to get rid of all of the inflammation, but something weird I started noticing a few weeks after I began taking the medication is that when I'd eat food I'd get a burst of energy. It is a feeling that is completely foreign to me, because food almost ALWAYS makes me feel more tired/ rundown/worse. But I was actually getting an energy boost after eating. I don't know if it's normal, I'd expect that it may be... but it's almost like getting a little energy boost a couple hours after a meal. It felt great. I thought it was the digestive enzymes that I was taking at the time... nope, definitely the prednisone.

I have not experienced this as far as I can remember as I've been sick for over 9 years. Literally, I have NEVER felt more energetic after eating, not once, not since I got sick.

Is this something you guys can relate to? Is it normal?

I have NEVER felt that off of the prednisone. No matter how faithful I am to the gluten-free diet, food has always made me feel worse. However, following a gluten my reaction to all foods becomes exceptionally worse...

I'm having an endoscopy done tomorrow and I really am anxious over the results, I don't think I've healed. I'm just way too reactive to non-gluten foods, my stools are usually loosely formed, I still have abdominal pain. And with my level of sensitivity, it's just too easy for me to get glutened. I literally can't touch Wendy's or processed foods, they get me sick every time.

If my endoscopy results still show flattening, is it a good sign that I responded to prednisone? Can being glutened once every 2-3 months really set me back that much to keep me from being healed at all? Can my intestines heal on the drug and then stay healed after I taper off as long as I continue to stay gluten-free?

The GI symptoms do disappear very slowly if I'm extremely safe, and that's why I never considered the possibility that I have refractory, so much so that I never had a repeat endoscopy. But my symptoms have never disappeared entirely except with immunosuppressives. I do get GI symptoms after eating fruit, would that prevent healing as well?

[CNV2855]

So noone knows whether or not you can discontinue prednisone for refractory sprue after you've healed? Or if it's a medication "to take for life"?

Where are the people with RCD on this site? Are there really none on Celiac.com? Is there another site/forum dedicated for people with refractory disease because I want to hear their experiences.

Seems like most people here are a lot better off, less sensitive, and easier to heal than I am.

[CNV2855]

The only time I've ever felt close to normal has been when on immunosuppressives and I don't think I've healed after over four years gluten free, so I think RCD is a possibility for me. Unfortunately, I can't find anyone with it.

I've noticed there are several treatments for the disease, first being prednisone. I was on it just a few months ago and I responded tremendously well.

If you go on prednisone for RCD, do you taper off after you've healed and does your GI tract stay healed as long as you avoid gluten? Or are these medications to be taken for life?

All of the intolerances and other disabilities like fructose malabsorption, do they actually cause damage or keep you from healing? I have no doubt that not being able to digest fructose will cause diarrhea other GI symptoms but I have never seen one shred of evidence of fructose malabsorption or other "sensitivies" or "intolerances" causing enteropathy. Ever. Never seen anything that points to this.

So if I'm not healed after 4 years gluten free, do I have RCD?

I'm pretty sure my GI tract was healing while I was on the prednisone. Didn't have any "intolerances" to almost any foods, felt good eating almost anything including foods that normally gave me problems. Didn't have GI problems or diarrhea and generally felt great, especially after eating. I did end up glutening myself right as I was weaning off though.

[psawyer]

  On 9/26/2011 at 11:13 PM, CNV2855 said:

So noone knows whether or not you can discontinue prednisone for refractory sprue after you've healed? Or if it's a medication "to take for life"?

Um, I'm really confused. As I understand it, the definition of refractory celiac disease is celiac disease that does NOT heal on the gluten-free diet. So, as I get it, if you've healed you do not have refractory celiac disease. If you truly have refractory celiac disease, then, yes, you will need the meds for life.

I am only aware of one member here with diagnosed refractory celiac disease, and she has not been active in quite a while. You might want to send a PM to Canadian Karen. Or, send me a message with your contact info and I can pass it along to Karen. I have her email address and we are friends on Facebook.

[CNV2855]

  On 9/27/2011 at 1:26 AM, psawyer said:

Um, I'm really confused. As I understand it, the definition of refractory celiac disease is celiac disease that does NOT heal on the gluten-free diet. So, as I get it, if you've healed you do not have refractory celiac disease. If you truly have refractory celiac disease, then, yes, you will need the meds for life.

I am only aware of one member here with diagnosed refractory celiac disease, and she has not been active in quite a while. You might want to send a PM to Canadian Karen. Or, send me a message with your contact info and I can pass it along to Karen. I have her email address and we are friends on Facebook.

Sorry for the multiple posts, I didn't think my first one was displayed because it was greyed out.

Refractory Celiac Disease DOES heal on thiopurines and sometimes prednisone. I was wondering if those medications could be discontinued after the intestinal tract was fully healed?

I'm at the stage where my symptoms DO slowly subside (especially when I fast), but I am SO sensitive and have so many other allergies/intolerances/reactions to other foods that I literally can't go a few weeks without screwing up and it seems every mess up puts me back at square 1. Is it possible this could be considered refractory or that I could use prednisone to help me heal?

Or should I really just eat a diet of beef and vegetables indefinitely? I can't eat fish, chicken, corn, rice, fruit, soy, nuts, and eggs without having a reaction. I'm just like this lady:

  Quote

A 44-year-old woman with diarrhea, weight loss, and a small-bowel biopsy consistent with adult celiac disease failed to improve on a gluten-free diet. Despite in-hospital supervision at two university medical centers and addition of corticosteroid therapy, diarrhea and wegith loss continued, resulting in life-threatening nutritional depletion. She was transferred to the University of Chicago and made full nutritional recovery with total parenteral nutrition. Exploratory laparotomy showed no abnormality except the flat intestinal mucosal lesion. Diarrhea recurred when a gluten-free diet was resumed. When the patient ate egg, chicken, or tuna alone, severe diarrhea, hypotension, cyanosis, and shock occurred. When these foods--along with gluten--were eliminated from the diet, the patient returned to oral nutrition and made a full clinical recovery. In patients with refractory sprue deletion of other dietary proteins in addition to gluten, as in the present patient, may be lifesaving.

[T.H.]

One thing: have they ever tested you for Crohn's disease? I believe that prednisone is one of the drugs that can help control it, in some cases, and it sometimes goes hand in hand with celiac disease.

And it's also very sensitive to diet, although different people react to different food 'triggers' for it.

  Quote

I'm at the stage where my symptoms DO slowly subside (especially when I fast), but I am SO sensitive and have so many other allergies/intolerances/reactions to other foods that I literally can't go a few weeks without screwing up and it seems every mess up puts me back at square 1.

That pretty much described me for a long time. But I believe that if you are healing, then it's not considered refractory celiac disease, even if it's slow healing. Although if you can't remain healed, no matter how safely you eat, if you aren't on predisone, then I think you might have a case for Refractory.

I'm massively sensitive, with other allergies as well, and seriously - you have my sympathy. It sucks, there's just no other word for it.

  Quote

Or should I really just eat a diet of beef and vegetables indefinitely? I can't eat fish, chicken, corn, rice, fruit, soy, nuts, and eggs without having a reaction.

That's almost me exactly. Now reactions fish, corn, fruit, and nuts seem to be due to cc from gluten OR one of my other allergies, but I'm pretty much eating beef and veggies right now, and if I stray, I get sick and it's weeks to recover again.

Do you have a dietician? Mine has been invaluable, especially trying to stay healthy with such a limited diet. There are some things that are just truly difficult to get without dairy, grains, eggs, etc... Calcium is a challenge, as are carbs and omega fatty acids, and a few others.

So sorry it's been such a huge, frustrating trial for you. I hope that your doc has some ideas after checking you out!

[CNV2855]

  On 9/28/2011 at 4:31 AM, T.H. said:

One thing: have they ever tested you for Crohn's disease? I believe that prednisone is one of the drugs that can help control it, in some cases, and it sometimes goes hand in hand with celiac disease.

And it's also very sensitive to diet, although different people react to different food 'triggers' for it.

That pretty much described me for a long time. But I believe that if you are healing, then it's not considered refractory celiac disease, even if it's slow healing. Although if you can't remain healed, no matter how safely you eat, if you aren't on predisone, then I think you might have a case for Refractory.

I'm massively sensitive, with other allergies as well, and seriously - you have my sympathy. It sucks, there's just no other word for it.

That's almost me exactly. Now reactions fish, corn, fruit, and nuts seem to be due to cc from gluten OR one of my other allergies, but I'm pretty much eating beef and veggies right now, and if I stray, I get sick and it's weeks to recover again.

Do you have a dietician? Mine has been invaluable, especially trying to stay healthy with such a limited diet. There are some things that are just truly difficult to get without dairy, grains, eggs, etc... Calcium is a challenge, as are carbs and omega fatty acids, and a few others.

So sorry it's been such a huge, frustrating trial for you. I hope that your doc has some ideas after checking you out!

I'm really starting to believe that I have a really big problem with corn. I haven't really gotten that much better and seem to have many setbacks, but after having a full blown glutened reaction, albeit slightly more minor, after eating cornbread made from BRM's gluten free factory then I don't know how else to explain it. Today is like day four of my beef+veggies+water shindig and so far I feel great. Too soon to really tell but im hoping it's just a matter of me avoiding the right foods.

[GlutenFreeManna]

  On 9/28/2011 at 7:17 AM, CNV2855 said:

I'm really starting to believe that I have a really big problem with corn. I haven't really gotten that much better and seem to have many setbacks, but after having a full blown glutened reaction, albeit slightly more minor, after eating cornbread made from BRM's gluten free factory then I don't know how else to explain it. Today is like day four of my beef+veggies+water shindig and so far I feel great. Too soon to really tell but im hoping it's just a matter of me avoiding the right foods.

Do you know if you can eat gluten-free oats without symptoms? BRM processes all their gluten-free flours in a dedicated gluten-free facility, however they do have gluten-free oats in that facility. For the small percentage of people that have adverse reactiosn to even gluten-free oats, BRM products can also be problematic. There are at least 3 of us on the board that can't eat BRM due to the gluten-free oat cc of their flours. You may also have trouble with corn of course but I just thought I would let you know about the possibily of gluten-free oats being the culprit. Hope you can figure it out!

[Roda]

  On 9/29/2011 at 1:41 AM, GlutenFreeManna said:

Do you know if you can eat gluten-free oats without symptoms? BRM processes all their gluten-free flours in a dedicated gluten-free facility, however they do have gluten-free oats in that facility. For the small percentage of people that have adverse reactiosn to even gluten-free oats, BRM products can also be problematic. There are at least 3 of us on the board that can't eat BRM due to the gluten-free oat cc of their flours. You may also have trouble with corn of course but I just thought I would let you know about the possibily of gluten-free oats being the culprit. Hope you can figure it out!

I was thinking the same thing. I'm one of those who can not tolerate BRM anything! Try eliminating BRM products and see if it helps.

[CNV2855]

  On 9/29/2011 at 3:10 AM, Roda said:

I was thinking the same thing. I'm one of those who can not tolerate BRM anything! Try eliminating BRM products and see if it helps.

I did. There are two things I have NEVER eliminated in my diet ever, HFCS and fruit. Fructose malabsorption can cause brain fog, prevention of healing, fatigue and whatever else, and I was definitely suffering GI symptoms after having too much fruit. I also believe there's a chance that HFCS has some serious cross contamination due to the inherent contamination in the raw grain.

These producers buy in massive bulk and some of that corn is contaminated. I think it's naive to think that corn syrup is completely without it.

[mushroom]

I believe that until one has eliminated all other possible intolerances, that it is too soon to say that one has refractory celiac disease. I am not a supersensitive (although much more sensitive than my husband) but I do have a multitude of other sensitivities which I discovered over a period of 2-3 years: corn (I knew about this one before gluten free), soy - in fact all legumes including peanuts, green beans, green peas and all the other members of legume and pulse families; nighshades; citrus. I do tolerate dairy without problems , also eggs. But no quinoa or millet. Sorghum and buckwheat are okay. But it has taken a long while to get to this point. I was formerly lactose intolerant - no longer; can now tolerate a little potato starch (Udi's bread) and corn starch (again in baked goods). Often eliminating the offending food for a couple of years will allow your body to tolerate it once more if you do not overdo it. For example, I would NOT eat a baked potato right now!!!

If you carefully cull the offending foods, avoid them for a couple of years (some say one, but I play it safe) then they can sometimes be added back into the diet.

Prednisone is a drug that doctors love to prescribe but which plays havoc with a lot of people. I tolerated it well at first when given it for poison oak (which I also tolerated on first exposures) but the more I was given it the worse I suffered. I have listed in my medical records NEVER to give me prednisone unless failure to do so will mean I will die, my reactions to it are that dire. Of course I tend to react to medications as badly as I do to some foods, with continued exposure - limit what drugs I take because of this) so I suppose you would put me on the super sensitive medication thread (if there were one).

You really just have to get in tune with your body and keep a food and symptom diary and figure it all out. Not to say that refractory sprue is impossible, but I believe in many, many instances that it is other food intolerances that are to blame.