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

Interesting Dx Story


Swingin' Celiac

Recommended Posts

Swingin' Celiac Newbie

Hello, I'm brand new and this is my first post. I was wondering if there might be anyone out there who can understand or relate to my story.

Well it all began with a sore throat. I've been a singer for as long as I can remember, but a few years ago I developed this awful chronic sore throat that would get worse from singing. My sophomore year in high school I barely spoke it hurt so bad. So I went to an ENT and he gave me a tonsillectomy. I though all of my problems had been solved. I was wrong.

The sore throat persisted (though I will admit that it wasn't quite so bad as it was before) and so I tried to search for another cause. I thought I was singing improperly so multiple voice lessons and lots of $ later, not change. Back to the ENT, nothing.

Finally I found a pediatric ENT would diagnosed me with mild acid reflux in the throat and put me on a PPI for the reflux. He also thought my vocal usage might have been improper, so he sent me to a speech pathologist...nothing wrong there.

Well I didn't seem to notice much of a difference with the reflux medicine. I never had heartburn to begin with, but many foods (citrus, tomatoes, spices, etc.) really irritated my throat. I went back to my original ENT (the one who gave me the tonsillectomy) and he upped the dosage...still no change. My symptoms were basically burping and a mild feeling of something (maybe acid) refluxing into my throat.

So I finally saw a pediatric GI (she was so awesome and actually cared about my problems) and she gave me an endoscopy. She found some mild irritation, possibly indicating reflux, and put me on Nexium as a last powerful resort. Although I was able to sing without quite so much pain it was still there.

The next step was to get a pH test (BRAVO), which she referred me to another ped. GI for, and what do you know?...normal pH levels in the lower esophagus. However he found some bile in my stomach and, mild flattening of the villi in my small intestines. After a blood test it was set in stone...I learned I was a Celiac on the Ides of March, 2006 (man was that a surprise).

To this day I'm not entirely sure if I had reflux or not (maybe just enough acid to mess with the throat but not enough to damage the esophagus). I know that reflux inducing foods still hurt my throat, despite my being gluten-free for over 2 mo., so who knows. Anyway I'm just ranting, so has anyone out there had to go through something similar, and if so, will the sore throat ever go away? Thanks for reading this crazy long post. :D


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Hi, and welcome to this board! Your story sounds familiar, I have read similar ones before. Doctors are so clueless! Actually, you got diagnosed much quicker than a lot of people here. I finally diagnosed myself at the age of 52, after having had celiac disease symptoms from infancy!

Anyway, I am sure others will chime in who had a story similar to yours. It's only been two months, give it some time, your sore throat will hopefully go away eventually. You may have other intolerances as well, though, which could be causing your sore throat, especially dairy is a likely culprit.

Hang in there!

Swingin' Celiac Newbie

Thank you for your encouragement, and wow, I never knew dairy intolerance could cause a sore throat. I was beginning to wonder if I might have any troubles with dairy or other foods because I know that this is really common in people with celiac disease. I've also been noticing that rich dairy foods (e.g. milk chocolate, ice cream, and straight milk) tend to give me a stomach ache and lots of burping etc. but I can never tell if its just the normal celiac symptoms or something more. Also, another interesting note, is that my doctor said that maybe the gluten intolerance might be messing with my throat, but I think I've ruled out that by now (unless I'm ingesting gluten without knowing it [i sure hope not]). Anyway I'll try the dairy-free thing for a little while and see if my stomache or maybe even throat will start to feel any better.

mommida Enthusiast

I'm glad you have your diagnoses. So many people here have had to endure so much before diagnoses, many who eventually ended up self diagnosing.

We have heard of similar situations to yours.

Welcome to the board!

L.

Mabc Apprentice

Hi! I'm new here too. I am not diagnosed yet, but my symptoms seem to match celiac, and I'm trying the diet to see if my symptoms improve. Sore throat is one of my symptoms. My illness became much more severe 8 years ago when my sinuses started acting funny. I've had a sore throat (and other icky stuff) ever since 24/7/366 :rolleyes:

Anyway, I'm hoping my sore throat will clear up as I continue being gluten free. If not, perhaps it is another food also like dairy or corn. I know I don't have acid reflux, yet always the sore throat. Are you drinking plenty of water? People tell me that has a big impact though I'm not that good at it yet.

Best of luck to you!

BRUMI1968 Collaborator

I just got dx'd and I've had a bizarre off and on sore throat for a few years. It literally comes on and goes away within an hour. Weird. Obviously better than having it all the time...but it's never been explained. Maybe it's aliens.

loraleena Contributor

I also get on and off sore throat, plus chills and a general fatigued feeling. It can come and go at the drop of a hat.


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



Celiac.com Sponsor (A8-M):



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. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

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

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.