Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Newly Self-Diagnosed - Get Tested! My Story...
0

8 posts in this topic

I posted some of this elsewhere, but this is for those newly self-diagnosed or suspecting they have celiac due to improper or incomplete testing by their doctor. I self diagnosed 2 months ago and have been gluten-free ever since. One glutening a couple weeks ago...brutal. I decided to setup an appointment with a gastro and find out just what my situation really is. That appointment was late Monday afternoon and he had me in my procedure (EGD, bone density test, tons of blood work, etc.) the next morning. He wanted accurate test results so since I was gluten-free already he wanted biopsies and other work asap to baseline me and get me on the road to recovery.

I do not yet have the blood work results or bone density information yet. However, many people on the board ask similar questions regarding whether or not an endoscopy will show any signs of celiac if someone is already gluten-free. Short answer is YES! Although I do not know how long the healing time is for the intestine, my endoscopy results, although not back yet for the biopsies, showed visible villi damage in the intestine. I also have stomach lining damage from daily ibuprofen use for the celiac-induced headaches I no longer suffer from since being gluten-free.

If you doubt getting answers, please don't. It is worth the effort to go through all the testing even if you are gluten-free. Perhaps that's not the case for long-term gluten-free people, but if you've only recently gone gluten-free I'd recommend discussing it with your gastro and getting his/her insight into it. Mine happened to be highly experienced with celiac and left no test out of the list so it's important you find the right doc with the right experience and ability to test you properly.

One interesting note: my gastro has been practicing for 35+ years. In his first 15 years he had exactly 2 cases of celiac. He stated that statistically there should only be 400 cases of celiac in the US, but that we actually have between 3-4 million and possibly many more than that. He has gone from one every few years to now diagnosing a new case every 2 weeks. Don't doubt yourself...go get tested. It's worth the time and you may be surprised at what they find and the insight they give you from a medical perspective. I feel blessed to have such a wonderful gastroenterologist and I wish everyone similar luck finding a great doctor to fully diagnose your condition, and more importantly to get all of your vitamin, bone and other issues under control at the same time.

1

Share this post


Link to post
Share on other sites


Ads by Google:

Thats awesome that you were able to get in and get tested so quickly!

Unfortunately for some of us its not so easy. Especially without GI symptoms First you have to convince the primary to run the blood test. Which mine was reluctant to do, despite 3 first degree relatives! Then if that blood test comes back negative, there is no chance in hades of getting a referal to a gastro. Sometimes you gotta love the way the healthcare system works! :P

1

Share this post


Link to post
Share on other sites

You're right and I guess I'm fortunate that I have an HMO with open access so I didn't even bother with my GP and went straight to the gastro. I was armed with many pages of notes of my symptoms, changes after gluten-free, list of all symptoms with mine highlighted, etc. I know everyone can't go straight to the gastro, but worth avoiding the GP if the first appointment with the gastro is affordable. It makes me wonder if GP's who don't test thoroughly or know enough about celiac to test and rule it out are actually part of the reason more people are not properly diagnosed.

0

Share this post


Link to post
Share on other sites

Thanks for posting your experince Bill. That's great advice. It doesn't alway work out that damage is detected with the endoscopy, but when it does it is good to know about the extent of damage.

0

Share this post


Link to post
Share on other sites

It makes me wonder if GP's who don't test thoroughly or know enough about celiac to test and rule it out are actually part of the reason more people are not properly diagnosed.

Yes and not all gasteroenterologists are well versed in celiac testing or are actively looking for anything other than "classic" celiac symptoms.

This is the reason I remained undiagnosed for over 43 years.

1

Share this post


Link to post
Share on other sites




... However, many people on the board ask similar questions regarding whether or not an endoscopy will show any signs of celiac if someone is already gluten-free. Short answer is YES!

Glad you posted this, Bill. I've barely been able to believe how vehemently some claim the opposite around here, as if a biopsy can't possibly be positive w/out constant gluten up to the day of the procedure.

We just had another newer member w/ a positive biopsy after SEVEN months gluten-free. (Of course it's not a recommended testing strategy - I need to say that before someone claims "tom thinks 7mos gluten-free never changes test results" or some such nonsense.)

Anyway, I've long thought the bigger factor in biopsies is the patchy nature of damage combined w/ GIs taking too few samples or from too few locations.

2

Share this post


Link to post
Share on other sites

There

Glad you posted this, Bill. I've barely been able to believe how vehemently some claim the opposite around here, as if a biopsy can't possibly be positive w/out constant gluten up to the day of the procedure.

We just had another newer member w/ a positive biopsy after SEVEN months gluten-free. (Of course it's not a recommended testing strategy - I need to say that before someone claims "tom thinks 7mos gluten-free never changes test results" or some such nonsense.)

Anyway, I've long thought the bigger factor in biopsies is the patchy nature of damage combined w/ GIs taking too few samples or from too few locations.

There is a big element of that in it, Tom, but there is also a big difference in the healing rates among various individuals, how severe the damage has been, etc. ec. :)

0

Share this post


Link to post
Share on other sites

I decided to go gluten free because I'm breast feeding, after my blood tests were conclusive along with symptoms. I was surprised that the celiac specialist GI I saw for the first time Monday was not that concerned. She said someone with long-term celiac will usually have pretty lasting damage. She actually said there was no rush for me to decide about whether to do the endoscopy, since she doesn't think I really need it for diagnosis.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,917
    • Total Posts
      919,626
  • Topics

  • Posts

    • fructose malabsorption and gluten intolerant
      Look up FODMAPS.   That might clarify things for you.  There really are a lot of diet recommendations so make sure you bring a list of questions regarding foods to your doctor's  and dietician's appointments.  
    • Recovery?
      Thank you for sharing those web sites. I will look at them. We have been gluten free since December so it's been a while. Once, he had a gluten free beer, the kind that they take the gluten out, and his legs felt very heavy and had a more difficult time walking. I really don't want to experiment.  Although I am very careful about what we eat, I am concerned that some of our medication could contain gluten. Is there any easier way to tell if medication has gluten. I did find a website which listed drugs and known gluten but every drug was on it or was determined to be gluten free
    • fructose malabsorption and gluten intolerant
      I don't have celiac but doctors or amazed I don't so they told me to fallow the gluten-free diet like I have it... any way I was wondering if one can have corn, corn starch if they have fructose malabsorption. I am so confused on what I can and can't have.. i have an appt next week hopefully with a dietitian... also can you have sugar free stuff since it's not sugar.. I'm reading online and I'm getting a bunch of mixed info on both. 
    • Depression / anxiety issues
      Hi all.  Still feeling the same way this past week. I'm thinking of dropping dairy starting from today, I don't know if I have a problem with it or not, but I drink 2 coffees a day with milk. I'm just constantly tired all the time, and getting trough the day is pretty hard, I noticed a couple of weeks ago that my sleep was improving but the last couple of days I have been waking up at least 3 times during the night, then when I get up in the morning it feels like I have been hit by a bus, like I haven't slept at all. I keep waking up during the night needing to drink water as I feel dehydrated, I don't know why as I drink 2-3 litres of water everyday 
    • No actual diagnosis/genetic results.
      About 30% of people have a gene for Celiac.  They don't all have it because only about 1% of the population has Celiac.   It is quite possible she has something else that is causing her trouble.  Sometimes eliminating gluten helps that problem, like FODMAPS.   If it were me, I would keep her strictly gluten-free for a year or so.  See if anything develops.  Then I would try her back on small doses of gluten.  If it is something like FODMAPS, she may be able to tolerate some gluten after a while.  I would do that for 3 months .  If she is having issues I would then get her tested with a full Celiac panel and, if positive, an endoscopy.  Even if the panel is negative, if she is having issues, I would pursue more testing, ends, colonoscopy, etc. For schools to take a gluten-free or any special diet seriously, you will need a doctors note.  I am assuming US might be different in other countries.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,961
    • Most Online
      1,763

    Newest Member
    foodabc
    Joined