Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Questions About Testing/biopsy And Low-gluten Diet


eleep

Recommended Posts

eleep Enthusiast

Hi all -- I'm new to this forum and the whole idea of celiac -- I stumbled across the disease when I was researching what appeared to be a bad reaction to holiday eating and, in particular, a white pasta experience that really threw me off.

I'm 36 and have had a lot of the celiac symptoms in somewhat manageable form for most of my life since college (oddly, right around the time I had mono -- which I've seen people discuss on the board). In my 20's my diet was pretty bad -- I was in rebellion from a Type I diabetic father (another indicator) and ate a whole lot of pasta and refined grains. I started to try to deal with the overwhelming brain fogginess and fatigue (which I thought might be depression -- and was also diagnosed as ADD at one point) by really overhauling the way I cared for my body sometime around my 29th birthday -- I made a lot of slow, gradual changes, but basically they amounted to becoming a dedicated yoga/weights/jogging person and really focusing on cutting processed, refined foods out of my diet -- I actually backed off on being a total vegetarian and started to bring some limited amounts of (mostly) fish, poultry and meat into my diet.

Among the changes I made were to really focus on getting most of my carbs from close-to-nature sources -- so for the last 2 1/2 years I've predominantly been getting most of them from beans, whole grains -- including whole wheat bread, that Barilla plus pasta (which is very lentil/flax seed heavy as well as wheat) things like quinoa and sweet potatoes and brown rice, winter squash, etc. However, I'm not a fanatic -- I do eat refined stuff occasionally, I do eat some sugar occasionally -- usually on special occasions or when I'm out at nice restaurants -- or when I really really have to try out the artisanal bread at the new bakery or someone brings an almond cake to a party or something.

Okay -- long intro, here's my question: has anyone else had this experience where their diet was pretty well-regulated and semi-gluten-limited yet they were still able to be diagnosed as celiac? Could the relative mildness of my symptoms (especially the GI stuff -- I have D. or D. like BMs most days of the week, but they're really not a disturbance and it never occured to me that they weren't far from normal) have something to do with the fact that my diet _isn't_ really gluten-heavy?

I have an appointment to see a gastroenterologist next week -- I'm hoping he'll at least be able to definitively make a blood/biopsy diagnosis, but I'm a little concerned that my "healthy" habits over the last few years might make a diagnosis hard -- how paradoxical -- anyone got any experience/advice? If it is celiac, I'd really like to cut out the gluten, but I want a hard diagnosis before making this decision.


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

Short answer: You cannot have a "hard diagnosis". The total gluten-free diet is the best test known.

It is often said that a gluten-free diet can make test results show a false negative. In your case, if the gluten has been there even in small amounts, then the immune response should still be detectable. That's my opinion based on all that I've read thus far. However, even those who get a negative on test results see great improvement from a total gluten-free diet anyway.

IMHO, try the diet. Nothing to lose, and so very much to gain. Many feel reluctant to "give up" the foods they have grown to enjoy. However, I know from experience how much better it feels to finally get relief. Try Tinkyada pasta - every bit as good as the wheat stuff, if not better. I'm sure others will have recommendations as well.

I've learned a great deal from this site, so I've no doubt you will too. Hope you feel better soon.

jerseyangel Proficient

Hi eleep--It looks to me like you are still eating a fair amount of gluten--not as much as you used to, for sure, but it's still in your diet. If a diagnosis is important to you, you could go ahead and have the blood panel done and then make the decision as to whether or not you want to do the biopsy. It's quite common for Celiac to be triggered by an illness such as Mono. I feel surgery is what triggered mine. It's quite possible that your brain fog, fatigue, depression and digestive issues are due to gluten intolerance. Since you're going to the gastro. next week, you obviously want to stay on the gluten for now. No matter what the tests say, once you have them, you can try going 100% gluten-free and see if your symptoms improve. (of course if you are Celiac, you must do so). Good luck at the Dr--let us know how you do :)

pattic Rookie

hhmm, a lot going on here.

you will find most people on this board say if a gluten-free diet makes you feel better, just stay on it. and if it's celiac disease, a low-gluten diet is still harmful. although you may feel you're getting away with eating just a little cuz you don't get symptoms, it is still affecting the villi in your digestive track. it's kind of like getting bruised and not realizing it til the next day when you see the black & blue......no symptoms, but damage was still done.

my story- gluten free for over 6 years, having never been technically dx. Then gastro told me during colonoscopy there was no reason to be gluten-free. But, after 6 years gluten-free maybe the damage was repaired??? But, I believed him and ate gluten. several months later, very ill again, and went back to gluten-free. I am just now waiting for results of celiac disease panel and gene test. It's too late for me to have a biopsy. Some say the tests are a waste of time at this point.....if the diet works, just stay on it. But, like you, I have a need to know. I don't know what the tests will come back showing, and either way I plan to remain gluten-free, but it would be nice to have some kind of indication.

keep us posted after you see the gastro.

eleep Enthusiast

Thanks everyone! Yeah -- it's been difficult to keep eating as I usually do lately without feeling somehow that I'm really poisoning myself, but having grown up with a Type I diabetic father, I know how much of a commitment making really definitive dietary changes can be. I can say that -- now that I'm keeping a food diary and logging GI symptoms -- I can detect some correlations between gluten consumption and celiac-type symptoms -- particularly the GI stuff and the fatigue (which I've been battling and concealing for years).

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Dora77 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Permanent Floating & Undigested Stools for a Year

    2. - TerryinCO posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Status Update...

    3. - cristiana replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Increasing symptoms after going gluten free

    4. - Jy11 replied to Jy11's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Conflicting results

    5. - Pasballard replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Increasing symptoms after going gluten free


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,971
    • Most Online (within 30 mins)
      7,748

    sha1091a
    Newest Member
    sha1091a
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dora77
      For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools. I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it rules out pancreatic insufficiency because, according to them, elastase levels would always stay low if that were the issue. However, could the 236 have been a false result? My doctor also thinks I don’t have pancreatic insufficiency because I’m able to gain weight. I also get hgh injections as my bone age is younger than my real age, this also contributes to weight gain, so I dont know if weight gain can rule out malabsorption. But maybe if I had real malabsorption I wouldnt gain any weight even with hgh? For celiac, I’m on a gluten-free diet, but there might b small cross-contamination from things like pepper labeled as “may contain gluten.” or sausages which dont have gluten ingredient but say may contain. My doctor said that small amounts like this wouldn’t harm me and even mentioned that an occasional small exposure to gluten may not do much damage (which seems questionable since I thought even tiny amounts could be harmful). She also said that when Im older (Im m17) I could try eating small amounts of gluten and do antibody blood tests to see if I can tolerate small amounts or not. For reference, I’m asymptomatic when it comes to celiac, so I have no idea if I’ve been “glutened” or not. My first concerning celiac blood test was semi high IgA, then 3 months later we did a check up and my IgA was high so it was confirmed celiac. Since than I’ve had celiac antibody tests done yearly to see how my diet is going, and they’ve been negative, but I’ve heard those aren’t always reliable. I’ve never had a follow-up endoscopy to confirm healing. I also always kept eating „may contain gluten“ food. (I live in Germany so I dont know if „may contain gluten“ is as risky as in the usa but I suppose both are as risky) These stool issues started around the same time I was doing excessive heavy lifting at the gym. Could stress or lifting have triggered this, or is that less likely since the symptoms persist even after I stopped lifting? Occasionally, I’ll feel very mild stomach discomfort, but it’s rare and not severe. My doctor (also a dietist) said floating, undigested stools could still be “normal,” but that doesn’t seem realistic to me. Could this be impacting my vitamin or protein absorption? I also did a fructose intolerance breath test and had a high baseline of 20 ppm, but it never increased—only decreased over time. I fasted for 12 hours and didn’t eat fructose beforehand, but my stomach didn’t feel completely empty during the test. Could this mean the test was inaccurate? For lactose intolerance, I did the breath test but only fasted 10 hours and had eaten lactose prior because I wasn’t aware of the proper diet restrictions. My results were: 14, 12, 15, 25, 35, 40, 40 ppm—which would be considered positive. But given that I didn’t fast long enough or follow the right diet, could this result be unreliable? Has anyone else dealt with similar symptoms? What ended up being the cause for you? And sorry for the long text!
    • TerryinCO
      The Docs' and NP haven't committed to Celiac determination yet but say go gluten-free diet because...  And I have with improved physical results - feeling better; overall functions better, and more energy.  Still 10 pounds down in weight but I still have BMI of ~23.  It's been just over a month now gluten-free diet.  I'm fortunate I get along with diary/milk well and most other foods. I wanted ask about this site's sponsor, gliadin X.  If this is legit, seems like a good product to keep on hand. Though it says it's only a safety for incidental gluten contact - not a substitue for gluten-free diet. What's your input on this? This may be sensitive subject since they're a sponsor. I've used resources here and other sites for information, gluten-free food/product lists. So thank you for all that support. That's it for now - Stay warm...  -2F this morning in Colorado!
    • cristiana
      I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free.   Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet). Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above.  Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain. I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products.    You might like to keep a food diary. Cristiana
    • Jy11
      Well the conflicting results continue as the biopsy has come back negative. 😵‍💫 Waiting to discuss further but I really don’t know what to think now? Eight biopsy’s were taken from duodenum which surely should be sufficient if it was coeliac? 
    • Pasballard
      I have Celiacs and want you to be aware of the amount of weight you can potentially put on if you rely on gluten free snacks, bread etc.,they  are high in carbs.  I put on 25 lbs in a short amount of time.  Whole Foods are the best way to go but I struggle with this.  The cost of gluten free is also a problem.  I love black licorice but most have gluten.  My favorite chili seasoning as well.  The list is endless.  I take  Advil liquid gels and had no idea until I read this.  I hope you do better than I have done.  I feel I am destined to suffer daily no matter what.  My aunt didn’t take care of herself and died from complications.  I hope you can get on a good routine.
×
×
  • Create New...