Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Stressing Over Pillcam Results

maggiesimpson

Recommended Posts

maggiesimpson Apprentice
maggiesimpson
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

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. <_<

maggiesimpson Apprentice
maggiesimpson
Posted
  • Author

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.

Gemini Experienced
Gemini
Posted

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.

Gemini Experienced
Gemini
Posted

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!

  • 2 weeks later...
gstewart88 Newbie
gstewart88
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748
    Michelle C.
    Newest Member
    Michelle C.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal.  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) the small intestin in Celiac Disease and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  Why is poorly understood.  In fact, it wasn't even know that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So as part of your symptoms you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were sypmptos. Our western diet has many deficiencies build into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks for symptoms can come on quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, and indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog, deficient choline, iodine, thiamine. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study    
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      I am only wondering why you would need to cut out rice? I've never heard of rice being any issue in those with DH.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.