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Stressing Over Pillcam Results


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5 replies to this topic

#1 maggiesimpson

 
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Posted 03 October 2012 - 05:22 PM

I had a pillcam last week and got my results this week. They found aphthous ulcers throughout the small intestine. The results are "suspicious for Crohn's". My endo/colonoscopy biopsies had come back negative for celiac and only showed chronic inflammation and ulcers in the ileum. My bloodwork has all come back normal, too. At this point, I am not expecting to get a celiac diagnoses whether I have it or not. My gut feeling through this whole process has kept bringing me back to celiac, but who knows. I am most definitely gluten intolerant. I also have a problem with dairy and am finally going to get allergy testing for it. That stuff gives me swollen and sometimes painful sinuses along with postnasal drip like crazy. It also causes itching, mostly on my scalp.

So right now I am stressing over the possibility of crohn's. I have been trying to find out if celiac or dairy can cause inflammation and ulcers in the small bowel, but not finding much. I should also point out that my bloodwork has never shown inflammatory markers. Wouldn't that be present if I have a chronic inflammation disease? Of all the possible causes of my symptoms, crohn's was the one that I was really hoping would stay far away.

What other tests do you think they can do for crohn's? I would really like to finally get an answer but am getting used to the rounds of tests after tests. Maybe someday soon I will know what's wrong. Have any of you been in this position? I am just stressing myself out and I guess need to look for a little support from others who understand. I know this place is great for that.
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Megan
Diagnosed with Hashimoto's in 2003
Total thyroidectomy in 2003
Diagnosed gluten intolerant with the help of a holistic nutritionist in 2012

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#2 Takala

 
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Posted 03 October 2012 - 07:12 PM

I don't know much about Crohn's, but if you know you are gluten intolerant, and don't get along with dairy, stick with that gluten free diet and ditch the dairy.

I've had sero negative arthritis since in my twenties, and never have had a blood test show those typical inflammatory markers, have had idiot new docs actually try to tell me I haven't got it, because they ran a blood test before seeing scans or xrays. If you don't have rheumatoid factor when you're younger you may as well be a leper or a head-case to the rheumatic world, thank God I was diagnosed by an osteopath. Now they try to tell me it can't be (before I show records) because I'm not medded up to the gills, but they can't grasp the concept of not wanting to die by too many medications trying to "fix" it, and everybody knows healthy eating is a quack concept. <_<
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#3 maggiesimpson

 
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Posted 03 October 2012 - 08:57 PM

Thanks for the response. i finally went gluten free a couple weeks ago with a couple mistakes. forgot to check on those rice crispy treats before i ate one. wow! Felt that for a few days. Now i'm trying to figure out my tolerance level with gluten, i.e. am i good just taking the bun off a sandwich or will i get sick from that. As for the dairy, that is proving to be much harder to quit. I am so in love with my cheese. ;) I think i'm coming around because the thought of how it will make me feel is starting to make me second guess eating it at all.
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Megan
Diagnosed with Hashimoto's in 2003
Total thyroidectomy in 2003
Diagnosed gluten intolerant with the help of a holistic nutritionist in 2012

#4 Gemini

 
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Posted 04 October 2012 - 12:29 PM

I had a pillcam last week and got my results this week. They found aphthous ulcers throughout the small intestine. The results are "suspicious for Crohn's". My endo/colonoscopy biopsies had come back negative for celiac and only showed chronic inflammation and ulcers in the ileum. My bloodwork has all come back normal, too. At this point, I am not expecting to get a celiac diagnoses whether I have it or not. My gut feeling through this whole process has kept bringing me back to celiac, but who knows. I am most definitely gluten intolerant. I also have a problem with dairy and am finally going to get allergy testing for it. That stuff gives me swollen and sometimes painful sinuses along with postnasal drip like crazy. It also causes itching, mostly on my scalp.

So right now I am stressing over the possibility of crohn's. I have been trying to find out if celiac or dairy can cause inflammation and ulcers in the small bowel, but not finding much. I should also point out that my bloodwork has never shown inflammatory markers. Wouldn't that be present if I have a chronic inflammation disease? Of all the possible causes of my symptoms, crohn's was the one that I was really hoping would stay far away.

What other tests do you think they can do for crohn's? I would really like to finally get an answer but am getting used to the rounds of tests after tests. Maybe someday soon I will know what's wrong. Have any of you been in this position? I am just stressing myself out and I guess need to look for a little support from others who understand. I know this place is great for that.



I may be wrong but Crohn's does not affect the small intestine...it is a disease of the large intestine. They would biopsy the large intestine for Crohn's and the small intestine for Celiac. If you have ulcers and inflammation in your small intestine, that may be the precursor to Celiac so if you keep eating gluten, eventually there will be enough damage for them to find. Do you really want to do that?

I would suggest a dietary trial and then maybe get re-scoped to see if the gluten-free diet has helped with the ulcers and inflammation? If so, I would consider you Celiac, although I'm not an MD so that doesn't help much, does it?

Good luck and I hope you get some better answers but it sounds like Celiac to me.
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#5 Gemini

 
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Posted 04 October 2012 - 12:33 PM

Thanks for the response. i finally went gluten free a couple weeks ago with a couple mistakes. forgot to check on those rice crispy treats before i ate one. wow! Felt that for a few days. Now i'm trying to figure out my tolerance level with gluten, i.e. am i good just taking the bun off a sandwich or will i get sick from that. As for the dairy, that is proving to be much harder to quit. I am so in love with my cheese. ;) I think i'm coming around because the thought of how it will make me feel is starting to make me second guess eating it at all.


No.....anything with gluten cannot even touch your food or you can't eat it. You must be wary of cross contamination.

Does dairy bother you now? If it doesn't, then why give it up? Some people have to give it up for awhile, others do not. It is not mandatory to ditch dairy when starting the gluten-free diet.....only if you have symptoms after ingesting dairy. Tackle one food group at a time!
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#6 gstewart88

 
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Posted 13 October 2012 - 08:56 PM

Crohns disease can absolutely affect your small intestine. It is most commonly seen in the large intestine (30-50%) of cases but you can have crohns anywhere from your mouth to your anus.
I have crohns in my colon and just had some biopsies for coeliac as well. I am also scheduled for a pill cam in a month or so.
Many people with crohns disease find a change in diet helps their symptoms - even though Drs will swear black and blue that it won't help.

Don't be too freaked out with Crohns, there are lots of medications that can help! If you think you react to gluten then stop eating it and see if it helps :)

Hope that helps.
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