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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      27

      My journey is it gluten or fiber?

    2. - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    3. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    5. - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,804
    • Most Online (within 30 mins)
      7,748

    ems08
    Newest Member
    ems08
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
×
×
  • 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.