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Should I get tested for Celiac


coolsam543

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coolsam543 Newbie

Hey guys. I'm 19 years old and male. In general I'm pretty healthy I guess. I weigh 200 lbs and I have pretty low body fat. The majority of my symptoms began in January 2016. Since January, in general I've felt like crap most of the time. I have diarrhea pretty often, I burp SO MUCH especially late in the day, and I feel bloated a lot. I've also had the worst brain fog of my life and intense headaches everyday. I have such a hard time thinking and making sense of some basic things. I've never thrown up after eating a lot of pasta or bread or pancakes, but I almost always feel nausea. My sleep sucks, and I have a nervous stomach all the time. My heart pounds and it bothers the crap out of me. My emotions have also gotten pretty flat. I honestly I hope have this damned disease so I can finally address my symptoms appropriately. All my doctors say "oh its just anxiety," or "there's probably nothing wrong with you." The only reason I have some doubts that I have celiac is because I hear people saying they had it since they were a kid or that they've been hospitalized and put on feeding tubes and such. Neither of those are true for me. I've lived pretty normally before January 2016, besides some depression. I used to be able to eat so much food it was ridiculous, but now my appetite is really suppressed. Also I feel fatigued all the time, but then at the same time I feel wired up. It's a strange and annoying feeling.

So is it worth it? Should I ask my doctor to order some tests?


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GFinDC Veteran

Hi coolsam,

Celiac can start at any age.  Symptoms are widely varied among people.  Some people have no GI symptoms at all but they still have celiac disease.

It is certainly possible you have celiac disease or NCGS.  Yes, it makes sense to get tested.  The testing is a blood test first for antibodies.  Then later an endoscopy to check for villi damage.  You need to keep eating gluten (wheat, rye barley) until all testing is done for the test results to be accurate.

Jmg Mentor
15 minutes ago, coolsam543 said:

All my doctors say "oh its just anxiety," or "there's probably nothing wrong with you."

Welcome Sam :)

One thing which I've learned through many wasted years seeking an answer is that doctor's are often not as knowledgeable or even competent as they might be. Don't be afraid of being assertive and standing up for yourself. It may help you to jot down some bullet points in regard to your symptoms in advance of the visit and also have a one or two line sentence that captures your aims, 'to exclude celiac as a potential cause of my symptoms'.

As above, DON'T start changing your diet, it's a mistake too many of us have made and it can make testing far more difficult and less accurate.

Once testing is complete you can still look at diet as a way of changing things whether you're positive for celiac or not. You'll find plenty of support here. 

Best of luck :)

 

Zodi1993 Apprentice

Hey CoolSam,

Your symptoms sound very familiar. My daughter gained the freshman 15 in college and basically could eat non stop. Being a soccer player she had a healthy appetite. Then one day she got food poisoning and that started a downhill spiral of health issues. Chronic diarrhea and brain fog. Her anxiety  was off the charts. Stomache pain that would have her curled up in a ball with a heating pad. She had a colonoscopy, endoscopy (for acid) and lots of blood work. They even did a stool sample and everything came back negative. She had bad acid and lost almost 25 pounds. Finally someone suggested getting tested and her GI doctor said, I can't believe I didn't do it sooner' and yup she tested positive for Celiac Disease.  Fast forward 3 years and she is Gluten Free and gained most of her weight back. This is hard at your age but the sooner you know the better you will feel. Not overnight but usually within 6 months to a year as it differs for everyone. 

You are not alone. ?

Welcome to the forum! 

 

coolsam543 Newbie

Thanks everyone. Got a doctor's appointment coming up Monday!

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  • Posts

    • trents
      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
    • Celiacpartner
      Thanks so much for the responses. I will urge him to go for further investigation. To be 48yrs old and develop a new allergy.. ugh, As if celiac disease isn’t enough! 
    • trents
      This does not seem to be an anaphylactic response but I agree it would be wise to seek allergy-food sensitivity testing. You might look into ALCAT food sensitivity testing.
    • Rogol72
      @Celiacpartner, I agree with Scott. We have a food festival yearly in the town I live in, with artisan food stalls everywhere. I spoke to the owner of one of the artisan burger stalls, enquiring if the burgers were gluten-free when I said I was Coeliac ... he said he had a serious anaphylactic allergy to fish himself. He possibly carries an epi-pen or two everywhere he goes. I would go see an allergist as soon as possible as suggested.
    • Scott Adams
      After years of stable management, developing new symptoms to historically safe foods like nuts and fish strongly suggests a secondary issue has developed. It is highly unlikely to be a new gluten issue if the foods themselves are certified gluten-free. The most probable explanations are a new, separate food intolerance (perhaps to a specific protein in certain nuts or fish) or a true IgE-mediated food allergy, which can develop at any age. The symptoms you describe—cramps and the urge to vomit—can be consistent with either. It is crucial he sees an allergist for proper testing (like a skin prick or blood test) to identify the specific culprit and rule out a serious allergy, as reactions can sometimes worsen with repeated exposure.
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