Refractory Sprue?

[michiamojersey]

I am at the end of my rope. I have been gluten-free for over two years and now, (all of a sudden) I'm back to square one. I know that I wasn't accidentally glutened because my symptoms have lasted over three weeks. Normally if I encounter CC, (I never, ever, EVER cheat!) I'm out for about 4 days with GI problems, skin issues, etc. and then it's over. My husband is an absolute angel and forbids gluten to ever enter our home...food or beauty products. It has to be something else. After about a week and a half of diarrhea about 6-10x/day, I was so dehydrated that I went to the emergency room. The doctor impatiently let me talk for approximately 1.5 minutes and told me that I have the flu. I thought my husband was going to blow a gasket! The guy didn't even care to listen to me. I had/have severe abdominal pain, so he ordered an x-ray. X-RAY????? Why? Because my bones might have the flu, too?! Seriously... He proceeded to give me morphine through my IV and then sent me home with Immodium five minutes later with "stomach flu" as my diagnosis. I'm not quite sure when they started treated a stomach bug with morphine...mmmmm. What a jacka**! (Pardon my language) I don't know where he got his degree, clown school? Anyway...I have been doing my own research over the last two months or so, (I have been so drained...I figured it was worth looking into) and the only thing that makes any sense is Refractory Sprue. I know that it's uncommon, but they also told this 120 lb., 25 yr. old that I wasn't the "typical" candidate for gall bladder problems yet they didn't have a issue with taking it out! So after all that kvetching....here's my list of symptoms: constant abdominal pain, frequent diarrhea, passing undigested food (sorry! I'm past the embarrassment stage...I just need answers), bloody stools, extreme fatigue, lightheadedness, constantly hungry, colorless skin, skin that tears easily (I took a band-aid off the other day and it ripped two squares of my skin off where the adhesive was), arms and legs both losing mass/weight with an extremely bloated stomach, etc., etc. I apologize for being blunt, but I cannot go on like this. I just got married and I feel SO guilty to burden my new husband with this. He has been nothing but understanding, but I'm supposed to be fun, young and still in that "honeymoon" phase. I feel so bad for affecting anyone in my life....husband, parents, employer. It's hard to explain it to my boss because I don't "look" sick. I jokingly told my husband that I was going to start wearing a sling on my arm so I could have "something wrong with me" that people could understand. My husband is in the military so that makes my hospital/doctor experience interesting. (It possibly explains the aforementioned diagnosis) I just need an answer. I can't take this anymore. I thought life was hard enough with trying to go gluten free 2 years ago...what's the point now? So many people say that they "just have to" cheat...I wish! I'm trying to stay optimistic about it, but I can't anymore. Could this be RS? If not, what's wrong with me?

[Ridgewalker]

Have you tried eliminating dairy? In my reading, I've discovered that something like 50% of all Celiacs (at a minimum) are also intolerant to casein, a protein in milk. In fact, it's so common in Celiacs that I've started referring to it in my head as "milk gluten." If you haven't tried completely eliminating that, I would do so immediately.

Like allergies, intolerances can become symptomatic at any time during a person's life.

-Sarah

[Fiddle-Faddle]

I'm so sorry you have been going through such h3ll.

You might try PM-ing Canadian Karen here--I think she might have refractory sprue and also Ursa Major, who has several other major food intolerances--they are both extremely knowledgeable and far better educated than most MD's on this kind of thing.

Other possibilities might include Lyme disease and mercury toxicity, especially if you have had recent dental work and/or vaccines (the flu shot contains mercury).

Good people to PM about that include rachel_24 and CarlaB (see the "OMG, I think I might be on to something..." thread, but skip to the end, it's something like 22,000 posts long!).

This is definitely a good place for you to be--lots of knowledgeable people who have been through what you are going through and who have found a whole range of causes that the doctors never bothered to consider.

Good luck--keep us posted, okay?

[mftnchn]

Just lost my post...urgh. Anyway, so sorry for the problems you are having. Hopefully RS folk here will respond.

Meanwhile, just checking. Sounds like you are very careful. Have you been eating anything that might have changed their formula recently that you didn't check the label?

Or with the new laws, some companies are labeling gluten-free when there are still trace amounts. Like Rice Dream, used to list barley, now says it is gluten-free and doesn't list barley but hasn't changed their formula. Lots of people here have gotten sick.

Does fasting improve things? I hesitate to say that because you definately need fluids and electrolytes to replace all that you are losing.

I wonder where you are located and if you could get to one of the more major celiac clinics or doctors for a one time consult. This sounds so very serious to me.

Please let us know how you are doing.

[jmd3]

I feel so bad that you are having a terrible time. I know exactly what you mean when you say how sick you are, but others say that you look good. Take one step at a time.

I can not wear bandaids as I have a permanet scar where the last one was. It was as if my skin melted under the bandaid.

Does your skin appear to be more wrinklely looking, almost like old people skin? (sorry)

If you bring it up to a dr sometimes they blame it on dry skin, or compare theirs to yours...it's patronizing!

I am not sure about your religion....but how about communion wafers, they are made of wheat, and I was taking them, and it was making me so sick, it felt as if my skin was burning.

What about any new make-up - like lip gloss, or lip stick, I was using a Bare Minerals lip gloss, and found out it wasn't really gluten free like they said.

Emergency room doctors have one thought on their minds, try to fix the immedate problem and then send them on their way. When I was having similar symptoms as you...I had one ER doc tell me not to come back unless I was having a heart attack, or stroke, otherwise they could not help me. Unelieveable! Now if I go in to the er, I make mention of that everytime....and I get someone else.

Have you changed anything to what you are eating? Try and recheck any ingredients... Sometimes when I am ill, I can't concentrate and I don't read the ingre. very well. My daughter sometimes has to recheck my ingre. for me because of the concentration thing....or lack of it. Keep a food diary for a bit, they may help with an elimination diet if you need to try that later.

Sometimes if the item is made in a factory that uses gluten, you can get cc in the product. My doctor tells me that it is almost impossible to not get gluten into non gluten things if it is made in a factory that has both products. Try eating just fruits, vegs, meats, brown rice.... nothing processed for a bit. Whole grain rice, bananas, and applesauce may help with the D a bit.

What about your water, is it city or well water? Try some filtered or bottle water for a week, give your good bacteria a chance to come back if it was clorinated and you did get glutened a while back.

Do drink some propel...I know that it is processed, but it can give you some needed vit b vitamins, and help with your dehydration, I used to get dehydrate alot, but I now know that it was from inflamation of my intestines - so much water was going there to make D that I was dehydrating.

Does anyone remember the rule with gatorade> if you taste it and it is really sweet, you don't need it...in other words you are not dehydrated. You are actually suppose to sip it every few minutes too, a little bit at a time...then when it turns sweet flavor your electrolytes are back to normal.

Have you made a regular appt to see a doctor? It might be wise to schedule an appt with your reg doc, and even a GI doc if you can. Bloody stools need to be checked. Perhaps you can ask for a CT scan to check for anything underlying.

It sounds like you still need to rest! Don't worry what others think, clear your mind and take it easy... Please keep us posted how you are doing. I hope that you feel better soon.

Think about making an appt with your reg doc.

[nikki-uk]

All good advice has been given - but it really sounds as if you need to see a GI doc to find out what's going on in there (endoscopy/colonoscopy). Blood in stools should really be investigated.

Good Luck

[gfpaperdoll]

Yes, you really need to see a good Gastro doc, not the run of the mill too busy military doc.

In the meantime, I would stop eating ALL grains, and dairy and no sodas & no soy or artificial sugar.

Just cooked meats, cooked veggies, applesauce - whatever your system can handle in the whole food category of meats, seafood, veggies, fruits, nuts - try almond butter instead of peanut butter.

Peanuts are a legume & contribute to a leaky gut.

I do not think that you should eat any manufactured food...

& if you can buy your apples organic - or peel them, or get organic applesauce...

I hope you ge some expert care soon.

[bobu83402]

i went yhrough 2 years of hell myself with most of what you describe.

this started in 1989, i am now free of rs. i have been on normal food for 12 years now. i had diarrhea for 3 years without stop. i was living on a

iv tube in my chest. at the worst i was going over 20 times a day. my story is to long to write. don't give up. if you wish call me at 208-529-5253.

this is my home phone (ask for bob). call in the evening. GOOD LUCK

I am at the end of my rope. I have been gluten-free for over two years and now, (all of a sudden) I'm back to square one. I know that I wasn't accidentally glutened because my symptoms have lasted over three weeks. Normally if I encounter CC, (I never, ever, EVER cheat!) I'm out for about 4 days with GI problems, skin issues, etc. and then it's over. My husband is an absolute angel and forbids gluten to ever enter our home...food or beauty products. It has to be something else. After about a week and a half of diarrhea about 6-10x/day, I was so dehydrated that I went to the emergency room. The doctor impatiently let me talk for approximately 1.5 minutes and told me that I have the flu. I thought my husband was going to blow a gasket! The guy didn't even care to listen to me. I had/have severe abdominal pain, so he ordered an x-ray. X-RAY????? Why? Because my bones might have the flu, too?! Seriously... He proceeded to give me morphine through my IV and then sent me home with Immodium five minutes later with "stomach flu" as my diagnosis. I'm not quite sure when they started treated a stomach bug with morphine...mmmmm. What a jacka**! (Pardon my language) I don't know where he got his degree, clown school? Anyway...I have been doing my own research over the last two months or so, (I have been so drained...I figured it was worth looking into) and the only thing that makes any sense is Refractory Sprue. I know that it's uncommon, but they also told this 120 lb., 25 yr. old that I wasn't the "typical" candidate for gall bladder problems yet they didn't have a issue with taking it out! So after all that kvetching....here's my list of symptoms: constant abdominal pain, frequent diarrhea, passing undigested food (sorry! I'm past the embarrassment stage...I just need answers), bloody stools, extreme fatigue, lightheadedness, constantly hungry, colorless skin, skin that tears easily (I took a band-aid off the other day and it ripped two squares of my skin off where the adhesive was), arms and legs both losing mass/weight with an extremely bloated stomach, etc., etc. I apologize for being blunt, but I cannot go on like this. I just got married and I feel SO guilty to burden my new husband with this. He has been nothing but understanding, but I'm supposed to be fun, young and still in that "honeymoon" phase. I feel so bad for affecting anyone in my life....husband, parents, employer. It's hard to explain it to my boss because I don't "look" sick. I jokingly told my husband that I was going to start wearing a sling on my arm so I could have "something wrong with me" that people could understand. My husband is in the military so that makes my hospital/doctor experience interesting. (It possibly explains the aforementioned diagnosis) I just need an answer. I can't take this anymore. I thought life was hard enough with trying to go gluten free 2 years ago...what's the point now? So many people say that they "just have to" cheat...I wish! I'm trying to stay optimistic about it, but I can't anymore. Could this be RS? If not, what's wrong with me?