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Refractory Sprue


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36 replies to this topic

#31 Bubba's Mom

 
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Posted 23 February 2012 - 06:50 AM

SIBO is a bacterial overgrowth in the small intestine. Bacteria which is normally in the colon sort of "blooms" and comes upward where it shouldn't be. They usually do a breath test where they have you drink a sweet solution and test the gasses you breathe out at intervals. If they get a reading they know you have it.

I'm not sure how they test for yeast? For parasites
I had to do a stool sample test after I got home from Mayo and ship it overnight. They found I had a "weak" parasite that's not usually a problem for most people, but I was told I'm in such bad shape it would be wise to get rid of it. The Dr. said it usually comes along with other organisms, but didn't they didn't see anything else. I had been self treating for yeast, and had just done a 10 burst of Xifaxin.

For yeast, and SIBO it's a good idea to be taking a good probiotic every day. It will populate your gut with the good bacteria you need for digestion and crowd out the bad guys. If you've ever taken antibiotics for anything it can throw off the balance in your gut.

I was on Protonix for years, until I took myself off it in Jan. It reduces the stomach acid so much it doesn't keep bacteria and organisms under control like it should.
I haven't had the test for stomach acid. I think they use a pill camera to do that? If you've been on acid reducers, maybe you should be tested for that?

To be honest with you, I'm disappointed with the Mayo in JAX. It was very stressful making the trip, and the expenses for travel were pretty high. I don't think they did enough testing while I was there, and as a result I have a lot of unanswered questions? Other than the extended endoscope they just repeated tests I'd already had.

Entocort is actually made for treating Crohn's. It's supposed to stay in the intestine more than other steroids, so isn't supposed to have as many side effects? Maybe they will test you for Crohn's?

It's absolutely vital that you check things like salad dressings, etc. for gluten. Even just a bit can be enough to turn your immune system on, and that will cause you problems.

Good luck to you. I hope you get some answers.
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#32 USF1970

 
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Posted 28 February 2012 - 04:52 PM

Yes, I've been checked for parasites. It took my doctor more than two years before he was able to diagnose me w/microsopic colitis. I've been on Entocort since then. I hate the bruising it causes on my arms and I'm sure it's not helping my osteoporosis. My doctor mentioned a probiotic during my last visit so I'll ask about that when I see him again. Thank you for your concern and the information you provided. Please keep me updated on your progress. How far did you have to travel to get to the Mayo in Jax. Since your visit wasn't terribly successful, I think my next stop will be Dr. Rudert in Atlanta. Please take care, Linda
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#33 Bubba's Mom

 
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Posted 29 February 2012 - 06:05 AM

Yes, I've been checked for parasites. It took my doctor more than two years before he was able to diagnose me w/microsopic colitis. I've been on Entocort since then. I hate the bruising it causes on my arms and I'm sure it's not helping my osteoporosis. My doctor mentioned a probiotic during my last visit so I'll ask about that when I see him again. Thank you for your concern and the information you provided. Please keep me updated on your progress. How far did you have to travel to get to the Mayo in Jax. Since your visit wasn't terribly successful, I think my next stop will be Dr. Rudert in Atlanta. Please take care, Linda

I haven't been on the Entocort long enough to know what side effects I'll get. It's not as bad as Prednisone and steroids like that? I was on Prednisone years ago for pneumonia and started looking like a Budda. Was losing my hair, got a fat round face, and huge fat belly. I'm sure it helped damage my bones.

We live in Ohio, so the trip to Mayo JAX was 960miles. or about a 16 hour drive. We opted to fly instead.

Since starting the steroid and having taken the medicine to clear out the parasite I'm feeling a bit better. I'm taking a strong probiotic to rebuild my system from taking the anti-biotics too. You can't go wrong with Probiotics. They help with digestion and absorbing nutrients. You can't really over do them either. Your body just eliminates them if they aren't needed.

I also started taking a spoonful of coconut oil at each meal. It's a natural anti bacteria, yeast, and parasite fighter and has healing qualities. It's recommended for ailments of the digestive tract. It improves your good cholesterol too. I've been doing a lot of reading about it lately and everything I'm reading says it's very beneficial to the body, both inside and out. That might be something to look into too?
I'm now adding it to our dogs' meals too.
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#34 USF1970

 
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Posted 29 February 2012 - 05:57 PM

Coconut oil.....hmmmmmmm. I'll have to try that out. We have an excellent natural food store in town; I'm sure Peter will know about it. Regarding steroids - I was on a strong round of them when I had a compression fracture in my spine when I was first identified as having osteoporosis. Entocort is no where near as toxic as Prednisone but it does cause bruising. I try to take as few as possible a day; my colitis seems to flare up and then subside for awhile....right now I seem to be in remission.
Yikes, going to Jax from Ohio would be terribly expensive - fortunately, Jax is only three hours from me so it is quite doable but as I said, I think I'll try Dr. Rudert in Atlanta if we can't find a satisfactory resolution - and by resolution, I mean NO steroids or cyclosporine.
Today I did a foolish thing......I FIRST checked McDonald's for the ingredients in their frozen mocha frappe. It appeared to have no gluten so I splurged.....big mistake. I've been paying for it all night. For me though, it's just slight to moderate heartburn - no nausea, cramping, diarrhea.....none of that. THAT'S the reason I didn't realize I was having symptoms = b/c my symptoms are so slight. At any rate....take frozen mocha frappes off my list of foods that I enjoy but cannot tolerate. Thank goodness for the suggestion of a food journal - it's really showing me where I'm going wrong. And I thought I was being so compliant. 98% of the time yes, but now I find there is NO room for error.

Feel better and good luck..L
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#35 dilettantesteph

 
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Posted 01 March 2012 - 04:02 AM

Thank goodness for the suggestion of a food journal - it's really showing me where I'm going wrong.

That has really worked for me too. I'm glad that things are looking up.
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#36 Bubba's Mom

 
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Posted 01 March 2012 - 05:57 AM

Without a food log I think it would be very hard to figure out what foods you are reacting to?
So sorry you can't have the treat from McDonald's. Those little things like that can be enough to cause you big problems, esdpecially if you have several things that are not agreeing with you..and especially if they have even a tiny bit of gluten. The only thing from there I can safely eat is their soft serve ice cream. :(

I hope the Dr. in Atlanta can help you. Go in with a list of tests you've had. If you have copies of the results it might be a good idea to see if they'd like them sent before your appointment so the Dr. can look them over?

When we went to Mayo JAX we told them we'd be there one week. They gave me a schdule of tests and some were for after we planned to leave. In a case like that they have you go to the place where the test is given and you tell them you want them done as "walk in/stand by". You sit and wait and if they have a bit of extra time or someone is running late they squeeze you in. I had my MRI and CT scan done that way. I had to wait 2 hours for one, but the other they got me in right away.

They scheduled an appointment with a neurologist for March 14. We went and sat for hours 2 days in a row and I wasn't able to get in...so I think I'll mention that when mayo Rochester calls to book my appointment? :(

Please let us know how you're doing and how your appointment with the Dr. goes?
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#37 USF1970

 
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Posted 01 March 2012 - 03:55 PM

That's not at all like my numerous visits to the Mayo in Jax. Sometimes I had to wait but my only gripe was moving appts. w/o enough advanced notice. As far as I know, I haven't had blood work done in a long while. I guess that will be my doc's next step. Can't remember if you were the one who asked but yes, up till now, my endoscopes have come back very healthy. Good luck to you as well and post what the MN. Mayo has to say. I'm so sorry you didn't have as good a decision and outcome as I did in jax.
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