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Refractory Sprue


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#1 debmidge

 
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Posted 02 April 2004 - 03:27 AM

Hi All
Is there a Refractory Sprue patient in the house? Please tell us how they diagnosed this and what must be done for it and what the prognosis is. There is a need to know because I am suspicious that my husband may be at this juncture.

Thank you.

Debmidge
4/2/04
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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#2 Guest_perfect_*

 
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Posted 02 April 2004 - 11:33 AM

Hi Debmidge,

There are a few people who posted on the old board who do have Refractory Sprue. This is a tough question because I have yet to read anything about the damage from Celiac Disease healing completely. Until there are autopsies done on people with Celiac Disease to see the results of the damage, healing, and anything else, I think we are all in the dark about this subject.
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#3 Josephine

 
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Posted 02 April 2004 - 11:57 AM

Thomas, I'm not sure I understand your posting. In most cases, if someone with Celiac follows a completely gluten-free diet, their small intestine does heal. It is possible to determine if healing has taken place while the person is still alive.

I was diagnosed with Celiac just before I turned 41 years old. I had symptoms of the illness from early childhood. One year after going gluten-free, I had blood work that showed no antibodies to gluten. I also had a small bowel follow-through (x-ray) that showed complete healing of my small intestine. The gastroenterologist said that, if he hadn't told the x-ray people I had Celiac, they wouldn't have been able to tell. I'm supposed to see him once a year for follow-up (unless I have a problem and need to see him sooner).

Debmidge, how long has your husband been following a gluten-free diet? Has he had follow-up testing (blood work and either endoscopy or small bowel x-ray)? That's how refractory or resistant sprue is diagnosed. If enough time has passed since going gluten-free, the blood work would show if your husband is unknowingly ingesting gluten. An endoscopy or small bowel x-ray would show if healing is complete.

Regards,
Josephine
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#4 Guest_perfect_*

 
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Posted 02 April 2004 - 04:13 PM

Hi Josephine,

Thanks for the information! :) Iím glad to hear there is a way to check and see that the intestines have healed up. I just hadnít read of anything yet. I was figuring they would be doing biopsies to check, and all that would do is check one little spot, and not the whole intestinal tract.

Thanks again! :D
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#5 Josephine

 
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Posted 02 April 2004 - 04:20 PM

Hi, Thomas!

You're most welcome!

I didn't know about the small bowel follow-through until the gastroenterologist ordered it for me last fall. I, too, had assumed the only way to check would be by doing another endoscopy.

Regards,
Josephine
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#6 gf4life

 
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Posted 02 April 2004 - 08:58 PM

Josephine,

How do they check for celiac disease damage with the small bowel follow thru? Just curious, since I had this done, and my son just had it done last week. Do they have to look for something specific when doing it? I was under the impression that it does not give a good enough view of the villi. That has to be done with an endoscopy & biopsy, and looked at under the microscope.

Even then they can't always see the damage unless they look at the cellular level for excess intraepithelial lymphocytes. Which by the way, most labs don't do unless specifically told by the doctor to do it and they can't say 100% that you don't have celiac disease unless they do look at the cellular level if the villi are not visibly damaged.

Thomas,

I agree that research needs to be done on a much wider scale for them to find out exactly what happens in the intestines of people with celiac disease. There is no way to check every inch of the intestinal tract, except during an autopsy. But it would have to be done by researchers looking for specific damage, or else a regular autopsy would just overlook it. They do have that new pill camera that will take thousands of pictures as it travels through your intestines, and they say it can help with diagnosing celiac disease. But I would think it would only be able to see severe cases of damage that is visible and not the early stages.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#7 debmidge

 
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Posted 03 April 2004 - 05:45 AM

Hi All

Thanks for your replies. I wanted to have more knowledge of refractory sprue and wanted to hear from people who have been diagnosed with this. My husand is faithful on his diet, I make sure that everything he eats is gluten-free. It's been 6 mos gluten-free and we were expecting that he'd at least would feel better by now and at least gaining more weight back.

So, anyone here get to the refractory spruce stage, please let me know some info like how long were you undiagnosed before going gluten free? What were you experiencing to bring you to the R.S. diagnosis (I realize that an endoscopy would diagnose it, but what symptoms were you still getting that made your doctor do the endoscopy?). What treatment are they giving you for the refractory sprue (R.S.)? How long were you gluten free before you realized that you would be having this RS problem?
  • 0
Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#8 debmidge

 
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Posted 03 April 2004 - 06:05 AM

I wanted to add that my purpose in knowing this is because my husb went gluten-free before endoscopy. I want him to get endoscopy and I want to let him know that if he has R.S. an endoscopy can pick it up. I realize he needs an endoscopy but he's a stubborn man (it's a good thing HE's never gotten pregnant - he wouldn't want to go thru delivery!). He's doctor procedure phobic. I want him to hear from people with R.S. to know that even if he's got that, there's still hope and a good reason why he should get an endoscopy.

thanks
debmidge
  • 0
Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#9 Josephine

 
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Posted 03 April 2004 - 06:34 AM

Mariann,

I was diagnosed with Celiac in September 2002 by blood work and biopsy. In September 2003, the small bowel follow-through showed total healing and my blood work showed no antibodies to gluten. The gastroenterologist said that damage would have shown on the x-ray. He diagnoses and treats a lot of people with Celiac and he seems to know what he's talking about.

In the case of a person with minimal damage to their small intestines, perhaps he would not rely on an x-ray for a follow-up; I don't know. This wasn't the case with me and I didn't ask him about other possible scenarios. In my case, by the time I was tested, there was no doubt that I had Celiac.

I'm reminded of my mother, who was diagnosed with Type 1 diabetes at the age of 57. She was exhausted and sick for a year before the diagnosis. She was checked specifically for diabetes 2-3 months prior to diagnosis and the test results were "normal". By the time she was diagnosed, she was "this close" to going into a coma. It seems as if there are medical conditions that, unless and until they are full-blown, doctors are not always able to test for and identify. There is still so much for the scientists to learn.

How is your family doing? Why did you & your son have the small bowel follow-through? Are you still seeking a definitive diagnosis for yourself and your children? I hope you aren't having additional health problems.

Take care,

Josephine
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#10 Guest_gillian502_*

 
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Posted 03 April 2004 - 12:55 PM

I have had two small bowel follow through X-Rays, and asked a lot of questions both times I was there. The info I was given was this: The X-Ray will tell if your celiac disease was so advanced that the lower part of the intestine, closest to the colon, and the upper part of the intestine nearer to the stomach, have appeared to have "reversed." In other words, the upper looks more like the lower part and vise versa. That much is obvious on the X-Ray. However, how well your villi are doing and how much they've regenerated can only be seen through biopsy to the small intestine. That's what two different technicians told me. They could be wrong, though, of course, but they both emphasized when they saw me getting too happy about my good results that the X-Ray ONLY shows a certain amount of information, and many, many things can hide from a small bowel X-Ray. To know more, I would need a CT Scan and another biopsy.

As for Refractory Sprue, I am awaiting information now from a doctor because I too may have RS. My antibodies are still very positive after 7 months gluten-free, and I have stomach and abdominal pain and swelling. The dr. suggested a colonoscopy and another endoscopy because of this. If I don't respond soon to the diet, steroids are next. I am praying I don't have RS, because unfortunately the prognosis is not very good. There are exceptions to every rule, though! My understanding is RS is diagnosed if the patient has no improvement on a gluten-free diet, and needs steroids and other treatments to help them along.
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#11 gf4life

 
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Posted 03 April 2004 - 04:58 PM

Gillian, I hope you do not have RS.

Same goes for your husband, Debmidge.

Josephine, the reason I ask about the small bowel x-ray is that I had it done (when they were looking for anything wrong with me, other than celiac disease!) and it was apparently normal. But they weren't lloking for celiac disease. My son just had it done, because the Ped. GI wanted to make sure this intestines were alright structurally, since my son shows a lot of signs of something else going on with him, other than celiac disease. Neither time will the techs discuss anything with me during the procedure about our particular cases. Only the doctor is allowed to discuss it. They would only tell me what they were going to do, and how it was done, not what theywere looking for. And they won't tell me if they found anything abnormal. So I have to wait for my son's follow-up next week. The doctor wants to check him for Inflammatory Bowel Disease also, but we'll see. My insurance wouldn't pay for the IBD first step blood tests through Prometheus, so I don't know what the next step would be. I do not want to have to put my 7 year old through a colonoscopy.

We are all on the diet and dairy free as well. We all had positive results from Enterolab, so I don't know what will happen, other than we are all feeling better on the diet. Maybe the doctor will just be able to look at the improvement and leave it at that...

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#12 debmidge

 
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Posted 04 April 2004 - 05:30 AM

Hi All

I have my doubts about the X Rays and this is why....during my husband's 2003 celiac disease diagnosis, his Gastro told him that his blood work results indicate that he's more than likely has had celiac disease the entire 28 years or so he's been ill. Over the past 28 years he has had numerous GI Barium X-ray series that he can glow in the dark. If they didn't pick celiac disease up on the x ray then when he was so very ill in the beginning & throughout the illness, I doubt an x ray now would show anything. His last x ray series was 1994 so unless they've improved the quality of the medium, I have my doubts.

Gillian, please keep me informed about your potential R.S. diagnosis and what's being done for you. SteveW in another post has just informed us that he may have Crohn's disease in addition to celiac disease, so that's another complication we should consider. Doctors have to realize that celiacs are not immune from other digestive disorders.

In general, I think it's a good idea to discuss this topic (refractory sprue) as it's relevant to us in that we need to have our hard-headed friends/relatives tested for celiac disease. and we need to talk about the aspects of advanced celiac disease. The threat of R.S. could be what gets them (hard headed friends/relatives) to a doctor sooner.

Debmidge
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#13 Josephine

 
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Posted 04 April 2004 - 06:36 AM

Mariann,

You must be so worried about your son! I am glad to hear that you are all feeling better on the diet and I hope that, if your son does have an additional health concern, it will be fixed easily.

Take care,

Josephine
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