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Stressing Over Pillcam Results
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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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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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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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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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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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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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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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