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Refractory Sprue
I saw my GI this week. He's very open to questions and very up front with me concerning my "condition." However, at the appt., it didn't occur to me to ask the questions as I wasn't really informed as to what "refractory sprue" was/is.
I was diagnosed w/Celiac disease in July so I'm now 5 months Gluten Free. However, I still have days of abdominal pain, diarrhea, etc. I'm very diligent about being GF - don't cheat - even at Thanksgiving when tempted I stuck to the GF diet. My energy level is zilch. In his words I am his "number one patient" meaning my blood work numbers were the worst of any patient he has ever had and my pathology was the worst of any patient he has had. (If I'm gonna be good at something, I guess this might as well be it! lol) I've been on one steroid or another since the end of July due to the seriousness of symptoms - I am to this day still slightly dehydrated. (No details required I'm sure.)
This week when I saw him he used the term "refractory sprue." I didn't think much of it - but of course, being the hound that I am, I came home and Google'd the heck out of it. 8 or 10 pages into it I had to stop myself - what I was finding was not good. Terms like lymphoma, precancerous, etc. shocked me. I know having celiac increased my risk of certain cancers. However, according to some resources, having refractory sprue "is" a precancerous condition - others state refractory sprue as increasing a patient's risk of non-Hodgkin's lymphoma by 50%, and on and on.
Refractory Sprue - celiac that does not respond to a gluten free diet. Effects only a very small percentage of patients. Over 30 years old. I'm falling into this lottery of the unlucky few and I just don't "get it." Am I reading too much into it? I do know not to read too much into what I read on the internet. But my doc ordered a CT of the abdomen/pelvis w/contrast for a reason. I had that done last night - I will get my full results on Monday - preliminary is normal - there are some perk to working for my PCP!
Sorry to ramble - just wondering and venting.
Thanks for any input!
Manda
I was diagnosed w/Celiac disease in July so I'm now 5 months Gluten Free. However, I still have days of abdominal pain, diarrhea, etc. I'm very diligent about being GF - don't cheat - even at Thanksgiving when tempted I stuck to the GF diet. My energy level is zilch. In his words I am his "number one patient" meaning my blood work numbers were the worst of any patient he has ever had and my pathology was the worst of any patient he has had. (If I'm gonna be good at something, I guess this might as well be it! lol) I've been on one steroid or another since the end of July due to the seriousness of symptoms - I am to this day still slightly dehydrated. (No details required I'm sure.)
This week when I saw him he used the term "refractory sprue." I didn't think much of it - but of course, being the hound that I am, I came home and Google'd the heck out of it. 8 or 10 pages into it I had to stop myself - what I was finding was not good. Terms like lymphoma, precancerous, etc. shocked me. I know having celiac increased my risk of certain cancers. However, according to some resources, having refractory sprue "is" a precancerous condition - others state refractory sprue as increasing a patient's risk of non-Hodgkin's lymphoma by 50%, and on and on.
Refractory Sprue - celiac that does not respond to a gluten free diet. Effects only a very small percentage of patients. Over 30 years old. I'm falling into this lottery of the unlucky few and I just don't "get it." Am I reading too much into it? I do know not to read too much into what I read on the internet. But my doc ordered a CT of the abdomen/pelvis w/contrast for a reason. I had that done last night - I will get my full results on Monday - preliminary is normal - there are some perk to working for my PCP!
Sorry to ramble - just wondering and venting.
Thanks for any input!
Manda
Replies to This Discussion
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Permalink Reply by Betty Harris on -
I too have read up on refractory sprue and still am a bit confused by the whole thing. Like how do they know if you have it? All I can tell you is can take a very long time before the healing REALLY begins, I'm sure your body can begin to repair itself as soon as you stop eating gluten, however after so many years, okay decades, of malabsorption there can be tons of damage.
I personally did not see a real change until nearly 18 months into this lifestyle. And I do not mean GF, I mean GF, sugar, yeast, dairy, corn, rice, vinegar, etc, etc free. I have a discussion on the forum about what I did. I still have issues once in a while, but nothing like it used to be.
I NEVER have cheated on the gluten free, EVER and I still had pain, bloating, diarrhea, brain fog, etc.
Last week I used some chapstick that I thought was Burts Bees, in the morning I woke up with swollen lips and sores in my mouth. Yesterday the stomach pain and diarrhea started, now my lovely prego belly is back. I look and feel about 6-7 months along. Not a happy camper!
Sorry, I'm rambling now. I just don't want you to read too much into this refractory sprue, I think for most of us the road to healing can literally take years. I am going on year two and just now started to feel like I am on the right track (well, other than the chapstick deal. ARGHH).
Merry Christmas
B
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Permalink Reply by Amanda Conley on -
Thanks for the insight! As far as can be determined I'm not being "cross contaminated." I did get my blood work results back and I am now back in the "normal" range which indicates no gluten is getting into my system. I no longer lick envelopes at work - I have a sponge tipped bottle for this - my children have their own bread, toaster, butter, etc. to eliminate my getting sick from contamination with their food. (They are 16 and 19 and do not have celiac so I was not forcing a GF diet on my entire family.) When I cook for the family I do so totally GF - when they pack their own lunches or make a sandwich they are on their own! :-)
Over Christmas I was off work for 5 days. My stomach symptoms improved significantly. On my first day back to work the symptoms "reappeared" by mid afternoon. My GI states that stress plays a definite role in this disease. This is something I'm going to have to work on as there is no hope that my job will become less stressful. I just have to learn how to deal with it in a way that is less detrimental to myself and my gut.
Thanks so much for all the input. I do appreciate it! I hope you have a wonderful New Year.
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Permalink Reply by luce on -
Hey Amanda, I hope you are feeling better and don't end up having Refractory Celiac! As for other insight, I would really look into what Betty said, you could be getting your glutinated problems from other food sources. After I read her post on Candida and have stuck to that with the Celiac diet, I am already feeling better. I'm not well yet, because I am still in early stages of healing for both, but better feeling is without a doubt worth trying an elimination diet to see if there are other culprits. If you research Candida and it doesn't seem to fit you, then maybe try an elimination diet where you eliminate one "allergy/intolerance" source for a week and alternate if you haven't found it. However, if you are being prescribed steroids at length, and have the other symptoms and signifiers (worse when stressed) I would look into Candida more, because a lengthy steroid run or likewise of anitbiotics can give this to you, espcially if you are already a prone person. I hope this helps. Good luck :)
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Permalink Reply by Marian Franklin on -
I have refractory sprue and have read up on it. You probably know this but sprue is a condition when the fats and oils you eat just pass right through you without being adsorbed. When you have lots of fat in your feces they will float in the tiolet water, not sink to the bottom like normal. Also there are lab tests to determine the level of fats in feces. I have been following the food list described in the Specific Carbohydrate Diet. I bought the book 'Ending the Vicious Cycle" by Elaine Gottshall and the way the problems are described and the diet has helped me quite a lot . Maybe it is ''Stopping the Viscous Cycle, am foggy tonight, but there is a website where you can read about it. After about a year on this GF diet I have been able to add back some foods to my very limited diet. I read all that stuff online about refractory sprue and I was frightened and discouraged. But I have a mantra I use when things get hard - I think to myself - 'I will go forward with courage' and do this until I calm down and start looking for what I can do and reading about what other people have done that helped.
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Permalink Reply by Amanda Conley on
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Thanks for the additional thoughts. It's been a particularly trying week-stressful week at work, sick again with pain, vomiting, the whole nine yards. No gluten so I'm at a loss if it's truly a celiac flare or not. My PCP - who admittedly has very few celiac patients - told me today that he has never had a celiac patient with this many problems/flare-ups before. I look like death warmed over - feel like it too. My gut feels like it's been run through a hay baler. (There's the country girl coming out!) :-)
As of this morning, I'm being treated for my 4th sinus infection since September and my PCP also added phenergan to my list O' meds. I called my GI - per my PCP's insistence - and left a message updating him on all this wonderful "stuff." Honestly, I have no idea or hope for what his reply will be.
I don't doubt that I have celiac disease. My blood work was absolutely conclusive about that - the biopsy from the EGD was absolutely conclusive about that. But what I am beginning to doubt is that Celiac - or even Refractory Sprue - is my "only issue." I have thrown up all food for 3 days - nothing is staying down with the exception of very small amounts of liquids. I'm exhausted but not sleeping well - I have mucus and trace amounts of blood w/BMs now- I'm whining so much I'm aggravating myself. Sorry about that! I'm just extremely frustrated and I'm ready to pitch every Rx, vitamin, mineral, supplement in the garbage and say to hell with it all. If I'm gonna be sick anyway, why bother? (Not really, just thought it might make me feel better to say it.)
I'm gonna research the Candida issue now....who knows....maybe I'll find some answers.
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Permalink Reply by Amanda Conley on
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Just at update to the Sprue issue - I've had a second EGD. My GI has ordered "lymphocyte rearrangement studies" on the biopsies that were taken during the procedure. The type of treatment to follow will depend on the results of these studies. My TTG is normal, the upper intestine "looked" markedly improved from last summer when I had the first EGD, but there is still inflammation despite the months of steriod treatment.
One treatment option involves a drug that is used for patients who have received organ transplants. The drug suppresses the immune systems so that the body does not reject the organ. (The name of the drug escapes me at the moment.)
Three weeks of abdominal pain, vomiting and being hospitalized multiple times for dehydration and still being totally gluten free - no cross contamination - has led to the Dx of refractory sprue. Now we're just looking for the best way to treat it.
Hope all is well with everyone. I will update again in the next few weeks when the gene study results come back. Take care!
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Permalink Reply by Marian Franklin on
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Amanda, hope you are doing better by now. I have learned the once the gut is damaged we are very succeptable to intestinal infections - bacteria, viruses, yeasts, parasites - and learning how to deal with them is as important as keeping gluten free. You can reduce the risk of becoming infected by learning how to keep these disturbing infective agents out of yourself. This involves eating only thoroughly cooked meat, sterilizing all milk products, sterilizing all counter areas, sterilizing your hands after visiting the bathroom. I wear gloves when handling all meats and usually open the packages outside and put them in the pan there, being careful not to touch the handles with my gloves. There are solutions you can buy to kill the bacteria on fresh produce but I still don't eat anything fresh except sometimes fruit. It is hard to learn to do these things but well worth the effort.
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Permalink Reply by Betty Harris on
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Amanda, I pray you will be on the road to healing to soon.
It does seem, at least for me, that I can have a week of feeling like wow I'm finally getting better. Then, WHAM, something happens and I'm back to square one and thinking this will NEVER end, I will NEVER be well again.
Keep us up to date and let us know if you find something that does work for you.
Amanda Conley said:Just at update to the Sprue issue - I've had a second EGD. My GI has ordered "lymphocyte rearrangement studies" on the biopsies that were taken during the procedure. The type of treatment to follow will depend on the results of these studies. My TTG is normal, the upper intestine "looked" markedly improved from last summer when I had the first EGD, but there is still inflammation despite the months of steriod treatment.
One treatment option involves a drug that is used for patients who have received organ transplants. The drug suppresses the immune systems so that the body does not reject the organ. (The name of the drug escapes me at the moment.)
Three weeks of abdominal pain, vomiting and being hospitalized multiple times for dehydration and still being totally gluten free - no cross contamination - has led to the Dx of refractory sprue. Now we're just looking for the best way to treat it.
Hope all is well with everyone. I will update again in the next few weeks when the gene study results come back. Take care!
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Permalink Reply by Galwayfan on -
I'm sorry you're not feeling well. Hang in there. It does take time to get better. I was diagnosed at the age of 33 and it took a good 3 years before I felt solid. It took about 14 months befor I even started to gain any weight. I was like you, really messed up inside. I was treated in the hospital for about 2 weeks. No steroids though. They know more now than they did back in the 80's.
I'm surprised they would diagnose you as refractory after only 5 mos gf. I'm sure the biopsies will tell your drs. everything they need to know to help you. Thinking good thoughts and saying a prayer for you.
I hope they figure it out and find a way to make you feel better soon.
Oh..just a thought. You might do better with just simple foods without the processed gf replacement junk. That's all I had back then anyhow.
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Permalink Reply by Pamela on -
Amanda,
Have you eliminated any other foods? Specifically, do you still eat soy? Because your description sounds exactly like the presentation of my soy allergy. It actually makes me significantly more miserable than my gluten allergy.
Just because gluten is the problem, and maybe even the main problem, doesn't mean there aren't other problems.
Pamela
Amanda Conley said:Thanks for the additional thoughts. It's been a particularly trying week-stressful week at work, sick again with pain, vomiting, the whole nine yards. No gluten so I'm at a loss if it's truly a celiac flare or not. My PCP - who admittedly has very few celiac patients - told me today that he has never had a celiac patient with this many problems/flare-ups before. I look like death warmed over - feel like it too. My gut feels like it's been run through a hay baler. (There's the country girl coming out!) :-)
As of this morning, I'm being treated for my 4th sinus infection since September and my PCP also added phenergan to my list O' meds. I called my GI - per my PCP's insistence - and left a message updating him on all this wonderful "stuff." Honestly, I have no idea or hope for what his reply will be.
I don't doubt that I have celiac disease. My blood work was absolutely conclusive about that - the biopsy from the EGD was absolutely conclusive about that. But what I am beginning to doubt is that Celiac - or even Refractory Sprue - is my "only issue." I have thrown up all food for 3 days - nothing is staying down with the exception of very small amounts of liquids. I'm exhausted but not sleeping well - I have mucus and trace amounts of blood w/BMs now- I'm whining so much I'm aggravating myself. Sorry about that! I'm just extremely frustrated and I'm ready to pitch every Rx, vitamin, mineral, supplement in the garbage and say to hell with it all. If I'm gonna be sick anyway, why bother? (Not really, just thought it might make me feel better to say it.)
I'm gonna research the Candida issue now....who knows....maybe I'll find some answers.
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