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

Extensive Symptoms, Considering Testing -- Thoughts?
0

3 posts in this topic

Hey folks, 

 
A pre-emptive thanks for your consideration. 

 

I'm a 22yo male living on the East Coast of the USA.  I've had quite an interesting medical history, and I've recently had the lightbulb moment that much of it might be linked by Coeliac Disease.  I'd love to hear anyone's input, as I have a GP appointment coming up in a couple weeks, and any help is appreciated.

 

My story begins about 22 years and 302 days ago...  I was born with a 'malrotated intestine', which required emergency surgery, and I'm now 'half citus inversus'.  Over the years, I've also had about 4 hernia surgeries (among many handfuls of ER visits for bone breaks, fractures, cuts requiring stitches, dislocations, concussions...  I was quite the problem-child.  Ha.)  

 

I also had quite a many problems with digestion for as long as I can remember.  Most often, this would present every couple months in extreme, paralyzing stomach pain.  Doctors often just assumed I was having bouts of extreme lactose intolerance, and I drank a lot of milk, so I would be placed on goats milk for a few weeks (this never seemed to help). 

 

In the last four years, things have gotten worse.  In my first year at university, I got mononucleosis and swine flu, simultaneously (problem-child, remember?).  Ever since then, I've had terribly poor immune functioning.  When I get sick, I get *SICK*, and I get sick at least every three months.  In addition, my spleen becomes incredibly swollen and painful at the slightest sign of sickness; I had been experiencing depression and anxiety, and was actually diagnosed with Major Depressive Disorder, which I've at least been able to manage well with therapy and medication; and on top of it all, I often experience a weird tingling and numbness in my back and arms, which I just attributed to poor posture.  After researching Coeliac Dz, I'm not so sure. 

 

My digestive symptoms really became unmanageable in the last year.  The full laundry list: chronic nausea, chronic diarrhea, stomach pain, bloating, gas, total lactose intolerance, inability to gain weight (I actually don't mind that last one, but I'm 6ft tall and 154lbs)...  Anyways, I always attributed this to stress, poor diet (college lyfe, for the win), and recently, started thinking it might be some kind of IBS.  However, more and more events are pointing to something more reactionary to my diet, and I think it's gluten sensitivity of some kind. 

 
A good example: just three days ago, I went out on a date and had a great dinner.  Sweet fuji apples and gorgonzola, with fig jam, on walnut raisin wheat bread, with sweet potato fries.  I had 4 beers over the course of 6 hours -- 1 lager, 2 belgian ales, 1 IPA.  It was heavenly for my taste buds, but it was one of the worst nights for my digestive tract in a long time.  I'm still feeling the effects, even waking up in the middle of the night from stomach pain.

 

I drink beer about once a week, generally about the same amount, but I've never had that severe of a reaction.  I admittedly had been eating more junk food than normal -- Nilla Wafers are the bain of my existence -- but I definitely could rule out food poisoning (my backpacking in China and Nepal taught me how to recognize those symptoms well) and the lactose intolerance (gorgonzola is lactose free).

 

FINALLY, my question:

 

Could this be all attributable to Coeliac Dz?  Does anyone have similar problems, or has anyone had years of untreated symptoms?

 

I'm not planning on going gluten free until after the doc's appointment, knowing it might mess with the testing... 

 

Thanks so much everyone!

0

Share this post


Link to post
Share on other sites


Ads by Google:

What is the follow- up for your malrotation? Obviously, they must follow that closely? The possible problems even after correction means that a GI would exam you yearly? Maybe there isn't any but surely, because you are experiencing GI symptoms they would want to look at all the possible problems associated with the birth defect.

Sure it could be Celiac and you can get a blood test and biopsy to check that while you are there.

0

Share this post


Link to post
Share on other sites

I think it could be celiac too. I used to have many of your types of symptoms including really getting sick - when I had mono I also had pneumonia at the same time. Lol. Beer used to do a real number on me too; I don't know if it was the barley or the liquid delivery...

Anyway, when you do your testing, try to get a full panel:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests)

The endoscopic biopsy can give lots of info and maybe helpful in your case.

Good luck!

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
      103,647
    • Total Posts
      918,464
  • Topics

  • Posts

    • Biopsy confirmed?
      Right, usually they do an endoscopy after a positive blood antibody test.  The biopsy confirms the antibody results.  Doing them in the reverse order doesn't hurt anything though.  Sometimes people "fail" the antibody tests but still have gut damage.  Not everybody makes the same antibodies or in the same quantities.  Anyway, you should make sure they are doing the complete celiac antibody panel, not just a ttg test. And don't worry if the celiac tests are positive for gliaden antibodies.  Going gluten-free is an adjustment to your diet. Quite a few people around here have managed to adjust successfully.  It takes some effort, but anything worthwhile does they say.
    • Celiac Night Vision
      I don't have scotomas but you might find more help on a forum dedicated to vision issues.  Here are a couple I found.  the last link is a Yahoo search for "eye forum"  There may be others found if you try a search on Google. http://www.medhelp.org/forums/Eye-Care/show/90 http://www.healthboards.com/boards/eye-vision/ https://search.yahoo.com/yhs/search?p=eye+forum&ei=UTF-8&hspart=mozilla&hsimp=yhs-003
    • Positive Biopsy, Negative Blood Tests
      BTW, all first degree relatives of celiacs are supposed to be tested for celiac every 2 years in the absence of symptoms -- immediately if symptoms present. Your kids, your parents & all siblings should be tested. And that goes for your brothers kids too.
    • Positive Biopsy, Negative Blood Tests
      I agree completely with cyclinglady! Do you even know that there is such a thing called silent celiac? No symptoms at all but the villi are damaged.  I see you joined in 2009. Why? Is that when your brother was diagnosed? IMHO you need to do a lot of research & find out just exactly what you're risking. 
    • Positive Biopsy, Negative Blood Tests
      What?  Be sure that next endoscopy tests you for lymphoma (cancer) as well!   Seriously.  You need to do some research as your knowledge of celiac disease is lacking.  Did you fail the entire celiac panel?  Or did your doctor/insurance save cash and just order the very good (but does not catch all celiacs) TTG IgA?  You have a family history, a positive biopsy, what more do you need?  You do realize that this is not about just giving up gluten, don't you?  We just had a member join this year who was told years ago that her tests were "inconclusive" and that she now has suffered with lymphoma (cancer)? Ugh!   Endoscopy in 10 years?  Who would even wait 10 years?  This isn't colon cancer and polyps!   Are you talking about a colonoscopy?  Are you even sure you had an endoscopy?   Be sure you have your bones checked too.....and forget the breath.  You might not have any teeth and implants will be out since your bones will be compromised. Sorry, if I come on strong, but when I was diagnosed I had no tummy issues.  A few months later, my bones began breaking.  I was undiagnosed for a long time because of mis-informed doctors.  At least it was not stupidity on my part.   So, I urge you to research this disease more!  Hopefully you'll ward on another autoimmune disorder by remaining gluten free.  Find what celiac blood tests were actually taken!  Even if you do not think you have celiac disease, something has caused villi damage -- like a parasite, milk, or something......even more sinister! Good luck!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • 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
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,741
    • Most Online
      1,763

    Newest Member
    Roemill
    Joined