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

Pillcam In A Week

Sandi*

Recommended Posts

Sandi* Apprentice
Sandi*
Posted

Both my bloodwork and biopsy were negative for celiac disease (two years ago); however, I can definitely see positive response to diet change. I've been gluten-light for about 3 or 4 months. That is, sometimes I would have a regular cookie (maybe once every two weeks) and I just realized that I've been glutening myself unknowingly all this time. For example, I drink this coffee substitute that I didn't realize that barley malt. I've used cooking sauces that had wheat protein. I know that I have to be more careful.

However, I'm trying to figure out, if in case I do have celiac disease, is this gluten-light diet still enough to show damage that could be detected by the pillcam test? Or would I have to stuff myself with bread for months? I'm still having a lot of symptoms and digestive problems (mainly bloating and constipation, pain, cramps, as well as knee pain). So I figured I might as well take an advantage of the fact that I've been glutening myself and don't start being really strict about the diet until the test is over. It's only a week away so if a little gluten here and there is what it takes to get a diagnosis I can deal with that. Since I never went fully gluten-free for a long enough period of time I should still show damage, right (provided it is celiac disease)?

OK, so just to make sure I've expressed myself well enough, my question is: would my intestines still show damage since I've only been gluten-light but not fully gluten free or would that be enough for them to heal anyway?

TIA!

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

Celiac.com Sponsor (A8-M):


moldlady Rookie
moldlady
Posted

Sandi,

How did the pill cam go? Did it show anything?

ML

Sandi* Apprentice
Sandi*
Posted
  • Author

moldlady, it's not for another week (actually more like 10 days, it's on the 8th) and then I assume I will need to get an appointment to actually talk about the results. But I'll post here once I'm all finished!

moldlady Rookie
moldlady
Posted

Thanks Sandi,

Sorry, I thought I read about this two weeks ago and then I just checked the date of your post. Someone else must have posted something similar. Dah!

I wish we could get test results as fast as food!

I'll be waiting for your report.

ML

MDRB Explorer
MDRB
Posted

Hi,

Most doctors think that the only way to diagnose celiacs is with an endoscopy.

When I had mine done, I had been gluten lite for about 6 months, as a result my blood tests came back negative. Before the endoscopy, I was told to eat at least one gluten based meal every day for one month otherwise the test would not be conclusive. From what you have said about your symptoms and reaction to the diet it seems likely that you do have celiacs.

Good luck

ThatlldoGyp Rookie
ThatlldoGyp
Posted

yes, if you have celiac, your villi would most likely still show damage. I just read a study... endos taken on Catholic celiacs. Villi damage still seen when their only known gluten intake would be the communion wafer once a week, all participants were asymptomatic yet still showed damage enough to be seen with sb biopsy. So, based on that study, then you should be good. Either way, it takes adults 6 months to a year to repair their gut, so damage from before you went gluten-free lite should still be present, add that to additional exposures and you are most likely glutened enough to have damage.

Please talk to your Dr. about this though, your degree of sensitivity is also important, and just because you may not have celiac doesn't mean that you aren't gluten sensitive. Hope you feel better soona and good luck on your pill cam study.

Sandi* Apprentice
Sandi*
Posted
  • Author
Hi,

Most doctors think that the only way to diagnose celiacs is with an endoscopy.

When I had mine done, I had been gluten lite for about 6 months, as a result my blood tests came back negative. Before the endoscopy, I was told to eat at least one gluten based meal every day for one month otherwise the test would not be conclusive. From what you have said about your symptoms and reaction to the diet it seems likely that you do have celiacs.

Good luck

new2celiacs, thanks for the answer. Did you have the endo done yet? Was eating gluten for a month sufficient to get a positive diagnosis?

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

Celiac.com Sponsor (A8-M):


Sandi* Apprentice
Sandi*
Posted
  • Author
yes, if you have celiac, your villi would most likely still show damage. I just read a study... endos taken on Catholic celiacs. Villi damage still seen when their only known gluten intake would be the communion wafer once a week, all participants were asymptomatic yet still showed damage enough to be seen with sb biopsy. So, based on that study, then you should be good. Either way, it takes adults 6 months to a year to repair their gut, so damage from before you went gluten-free lite should still be present, add that to additional exposures and you are most likely glutened enough to have damage.

Please talk to your Dr. about this though, your degree of sensitivity is also important, and just because you may not have celiac doesn't mean that you aren't gluten sensitive. Hope you feel better soona and good luck on your pill cam study.

Thanks Tha'lldoGyp, you're answer is kind of what I was thinking. I still have symptoms so I don't think I healed by just being gluten light.

My doctor is great when it comes to running tests, etc. but I think she's also very results-oriented. Basically, if I test negative for celiac, then according to her there's no reason not to eat gluten. But I'm really grateful for all the testing I got and I'm just going to listen to my own body. I feel better not eating gluten so I definitely believe that I'm at least gluten sensitive if not celiac and won't go back to eating it ;).

MDRB Explorer
MDRB
Posted
new2celiacs, thanks for the answer. Did you have the endo done yet? Was eating gluten for a month sufficient to get a positive diagnosis?

Yep, I had my endoscopy a while ago and it showed enough damage to the villi for a diagnosis. My understanding is that there are other things that can cause slight villi damage and that the doctor might want to do another endoscopy after a few months gluten free to check that the damage is healing with the new diet.

Having said all this, If I knew how sick the gluten was going to make me, I would not have gone back on it for those for weeks. They were the worst 4 weeks of my life, I was SO sick I could barely get out of bed.

The only reason to get a diagnosis is if you are not sure if you feel better without the gluten. Otherwise its just not worth the time feeling sick.

Good luck!

Sandi* Apprentice
Sandi*
Posted
  • Author

I'm sorry those 4 weeks were so horrible for you! But at least you have a proper diagnosis now.

As for me I don't think I'd go back to gluten eating for the endoscopy since I already had one and it was negative. I'm just hoping that the camera might find something further down there that the endo could have missed. I'm still so sick that I think if I do have celiac disease then the damage will still be there. But if not, I don't care, I'll just listen to my body and see how I respond to a full removal of gluten. Thank you for your help!

Lisa Mentor
Lisa
Posted

This is a recently released study done by the Mayo:

Given Imaging Announces New Mayo Clinic Study Concludes Celiac Disease May Be More Severe Than Symptoms Indicate for Some Patients

PillCam

Sandi* Apprentice
Sandi*
Posted
  • Author

Very informative, thank you!

  • 3 weeks later...
Sandi* Apprentice
Sandi*
Posted
  • Author

So the test did not confirm celiac disease. The only thing that was found were several intramucosal lesions. To be honest I'm not exactly sure what they are. I have a colonoscopy and my doc wants to take a biopsy of these lesions.

Archived

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

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

  • Member Statistics

    • Total Members
      132,918
    • Most Online (within 30 mins)
      7,748
    Dizzyma
    Newest Member
    Dizzyma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • 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.