Jump to content
  • 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

Second Opinions Please?


annonymous:)

Recommended Posts

annonymous:) Newbie

So, i am 16 and have been having "tummy problems" my whole life. Recently (within the last year, and specifically that last couple months)my symptoms have gotten progressively worse. I have been researching possibilities and celiac seems to me like the one that fits the most but i would really appreciate another opinion to convince myself i am not crazy :)

My symptoms are...

-stomach pain/discomfort/cramping (pretty much all the time especially after eating certain foods)

-bloating and gas

-occasional diarrhea/vomiting

-feeling wierdly faint (like the room is spinning)

-random occasional muscle cramps

-reflux and indegestion pretty frequently

-shortness of breath (feeling like i cant get enough air in each breath)

When i was a baby I had problems with dairy but I could still tolerate small amounts and highly saturated ones (like ice cream and pizza, small amounts of cheese etc.) about a year ago i started to gradually feel worse after eating those previously okay things and now i eat little to no dairy ever. But i am still feeling bad, I have really disliked eating because most of the time it makes me feel sick and so i started researching and after hearing about all this gluten stuff i think it might be the culprit. SO i have a doctors appointment next week and as i have heard many doctors are pretty unknowledgeable so i wanted to hear from some personal experts what they think before i talk with the doctor.

thanks


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

You are very smart to look at the possibility of gluten.

Your list of symptoms just as you described here should cause the Dr. to think about testing you for Celiac. But if it doesn't, you can ask for a full Celiac panel after you give them the list of symptoms.

Unfortunately, it is a crap shoot if you will get a Dr. who knows about Celiac or not.

I'm glad you know that going in.

But the good news is, if they don't want to test you and you feel better being gluten free, you can go ahead and do it on your own.

It depends how bad you want the tests.

Maybe your parents can help persuade the Dr. to test you. Are they in agreement with you?

You are light years ahead of your time figuring all this out at 16. I'm very impressed! :);)

ecf Rookie

Way to be so proactive. It is definitely good to get the ball rolling with a doctor to get to the root of your tummy troubles.

A couple of ideas: if there is a center specializing in Celiac Disease at a hospital near you, get an appointment there. Those doctors will be very well versed in the disease and, given your symptoms, you shouldn't have any trouble getting a Celiac Panel through them. There are clinics in New York, Chicago, Boston, Philly, etc.

If you can't get to one of those centers, the next best thing would be to see a Gastroenterologist, who would also hopefully go through other possibilities like Crohn's Disease.

Also, I would be cautious about going gluten free without getting tested for Celiac first. If the first doctor doesn't want to test you, see find someone else who does. You've probably come across this in your research, but if you go gluten free, your endoscopy results will always come back negative for Celiac, even if you really do have the disease, because gluten is no longer damaging your intestines. It is possible to test negative for Celiac Disease but still be gluten intolerant, but it's definitely important to have accurate test results and know which you are - for peace of mind, but also to know if others in your family should be tested for Celiac.

I hope this helps - good luck with the doctor!

  • 1 month later...
MichaelJacksons#1Fan Newbie

So, i am 16 and have been having "tummy problems" my whole life. Recently (within the last year, and specifically that last couple months)my symptoms have gotten progressively worse. I have been researching possibilities and celiac seems to me like the one that fits the most but i would really appreciate another opinion to convince myself i am not crazy :)

My symptoms are...

-stomach pain/discomfort/cramping (pretty much all the time especially after eating certain foods)

-bloating and gas

-occasional diarrhea/vomiting

-feeling wierdly faint (like the room is spinning)

-random occasional muscle cramps

-reflux and indegestion pretty frequently

-shortness of breath (feeling like i cant get enough air in each breath)

When i was a baby I had problems with dairy but I could still tolerate small amounts and highly saturated ones (like ice cream and pizza, small amounts of cheese etc.) about a year ago i started to gradually feel worse after eating those previously okay things and now i eat little to no dairy ever. But i am still feeling bad, I have really disliked eating because most of the time it makes me feel sick and so i started researching and after hearing about all this gluten stuff i think it might be the culprit. SO i have a doctors appointment next week and as i have heard many doctors are pretty unknowledgeable so i wanted to hear from some personal experts what they think before i talk with the doctor.

thanks

Wow! Those are almost the exact same symptoms I had! :D As the disease progressed I started to get dermatitis herpitiformis. I had vertigo the spinning sensation and was diagnosed with Meniere's Disease, not a good feeling, because it tends to cause nausea sometimes. :wacko: There is a link between Meniere's Disease and Celiac. Try convincing your doctor or go on a gluten free diet and see if symptoms improve.

Hope this Helps!

MichaelJacksons#1Fan =D

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,206
    • Most Online (within 30 mins)
      7,748

    juliemt
    Newest Member
    juliemt
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.