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Extensive Symptoms, Considering Testing -- Thoughts?
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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!

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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.

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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!

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    • I thought I would update you all.  I started to eat gluten shortly after this post.  I was miserable by the time I had my EGD.  The doctor gave a diagnosis after the EGD was completed, duodenitis, gastritis and hiatal hernia.  I had abnormal mucosa of the whole stomach and severe inflammation.  The biopsy results came back today, they stated early stages celiac disease.  I wonder what it would've shown if I wasn't on a gluten free diet for two years?  My doctor said he still wants me to come in for a talk, he doesn't really know if he should call it celiac disease since it's early stages....  WTH!  I've really got to find a doctor that specializes in Celiac Disease...    
    • thank you for the info, its very helpful to hear from someone else who has it and knows a lot about it. When you say I may be eliminating one problem vs 3, what would you think the other problems could be? It's frustrating because I even buy Uldis gluten-free bagels and what not and I still find myself reacting sometimes to that, I don't use butter but just gluten-free peanut butter, but like I said I don't know for sure if its from that or maybe something else. I have read on this site about a couple others that have had issues with uldis breads so could be that. but like you said I guess it can also just take awhile to get better. I read the other day that a lot of throwing up can put stress on your small intestine which can maybe cause your body to react to dairy, do you know anything about that or if that's true?
    • Thanks for the reply!  Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...) Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in.  Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.
    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
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