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

hi im new heres my story


Eric1980

Recommended Posts

Eric1980 Newbie

Hello,

My name is Eric from NJ. Im 40. Since my 20s i dealt with migrains,canker sores, poor digestive health. I started to eat better, but i still ate the bad stuff along side of it. I was never a drinker growing up. 1 beer and id start to get a headache and feel louzy. In my 30s I really begain weight lifting so I was eatting a ton of food. Mainly carbs like pastas and breads. Anything really. I went through a period of time where I had daily headaches, was tired alot, and had a deep brain fog. like I couldnt shake this fog out of my head for months. anxiety and depression have always lingered but not too bad.  Blood work showed low vitamin D. low white blood cells, low blood platelets. Anyway i carried on and had good days and bad. Some very bad where I was puking in the middle of the night my head hurt so bad. Some days i felt like i could really die but i toughed it out.  Would still get canker cores, espically after a bag of pretzels.  pretzels were my addiction.  Then one night around 9pm I was watching tv  and BAMMM!! out of nowhere an intense sharp pain, like a knife. jabbed me in the right lower rib. It dropped me to the floor. it came and gone within a second but it scared me!! anyway that never happened again, untill about a month later.  same area under my right rib!!.. That carried on for a few years untill one night on the couch after a pizza when I got that stabbing pain 2 times in a row and it dropped me to the floor.  I went to my dr. the next day. He sent me to a gastro.   they ran ultrasound,endo and bloods. ultra sound was clean, no concerns. endo came back espohigal varcies and gastris and small ulcer.  the varcies concerned the Dr.  They checked for liver disease. hepatitus etc. all negative. Only thing came back was my antibodies for gluten were very high but not celiac level high.  I went gluten free that night.  ive been gluten-free 2 years now. Lost about 15 lbs from the lack of carbs.  Headaches disapeared. canker sores are gone. Never had that scary sharp pain in my right rib again thank god but i do have a dull mellow ache in the area 24/7. when im busy with life i dont even notice it but when im at ease, i can feel it...  I do eat lots of rice and gluten-free snacks.  I do beleive those continue to aggravate the issue. whatever it is.   I do plan on getting my gallbladder hipa scan soon, ive always thought it was my gallbladder but i dont know.  2 years of this pain, and always thinking about it has really mad life crappy.  I pretty much eat eggs,potatoes,fruit,veggies,nuts,coffew,dark chocolate,all meat.  I have gluten-free pizza or gluten-free bread but  i swear my rib pain flairs after that stuff.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome to the forum!  
 

have you considered getting that celiac disease test again?  See if your antibodies have gone down into the normal range?  It might be worth seeing a GI and getting that HIDA scan.  My scan revealed 0% functionality and it ended up getting infected.  I never had stones.  So, I urge you to get it checked out.  

DJFL77I Experienced

you didn't have a biopsy with the endoscopy?

I dont think there is such a thing as celiac level high..  if you have high anti bodies then you probably have celiac

Scott Adams Grand Master

Believe it or not Snyder's makes some excellent gluten-free pretzels, but even so, it is more or less processed junk food that you would do best learning to avoid.

GFinDC Veteran

Hi Eric1980! :)

Welcome to the forum! :)

I am posting a link to a Wiki article on the human digestive system.  It might help you identify the area causing pain.

https://en.wikipedia.org/wiki/Human_digestive_system

Your gallbladder may be a problem.  The gallbladder stores bile made by the liver.  It then releases bile into the small intestine when signalled to do so by enzymes produced in the small intestine.  Those chemical signals may be interfered with by celiac damage.  So then gallbladder issues can develop.

The pain may be caused by something else too.

You may find some relief by taking Betaine HCL with fatty/oily/high protein meals.

  • 5 months later...
MADMOM Community Regular
On 9/17/2020 at 11:49 PM, Eric1980 said:

Hello,

My name is Eric from NJ. Im 40. Since my 20s i dealt with migrains,canker sores, poor digestive health. I started to eat better, but i still ate the bad stuff along side of it. I was never a drinker growing up. 1 beer and id start to get a headache and feel louzy. In my 30s I really begain weight lifting so I was eatting a ton of food. Mainly carbs like pastas and breads. Anything really. I went through a period of time where I had daily headaches, was tired alot, and had a deep brain fog. like I couldnt shake this fog out of my head for months. anxiety and depression have always lingered but not too bad.  Blood work showed low vitamin D. low white blood cells, low blood platelets. Anyway i carried on and had good days and bad. Some very bad where I was puking in the middle of the night my head hurt so bad. Some days i felt like i could really die but i toughed it out.  Would still get canker cores, espically after a bag of pretzels.  pretzels were my addiction.  Then one night around 9pm I was watching tv  and BAMMM!! out of nowhere an intense sharp pain, like a knife. jabbed me in the right lower rib. It dropped me to the floor. it came and gone within a second but it scared me!! anyway that never happened again, untill about a month later.  same area under my right rib!!.. That carried on for a few years untill one night on the couch after a pizza when I got that stabbing pain 2 times in a row and it dropped me to the floor.  I went to my dr. the next day. He sent me to a gastro.   they ran ultrasound,endo and bloods. ultra sound was clean, no concerns. endo came back espohigal varcies and gastris and small ulcer.  the varcies concerned the Dr.  They checked for liver disease. hepatitus etc. all negative. Only thing came back was my antibodies for gluten were very high but not celiac level high.  I went gluten free that night.  ive been gluten-free 2 years now. Lost about 15 lbs from the lack of carbs.  Headaches disapeared. canker sores are gone. Never had that scary sharp pain in my right rib again thank god but i do have a dull mellow ache in the area 24/7. when im busy with life i dont even notice it but when im at ease, i can feel it...  I do eat lots of rice and gluten-free snacks.  I do beleive those continue to aggravate the issue. whatever it is.   I do plan on getting my gallbladder hipa scan soon, ive always thought it was my gallbladder but i dont know.  2 years of this pain, and always thinking about it has really mad life crappy.  I pretty much eat eggs,potatoes,fruit,veggies,nuts,coffew,dark chocolate,all meat.  I have gluten-free pizza or gluten-free bread but  i swear my rib pain flairs after that stuff.

i’m with you my pain comes and goes but i’m only 5 weeks gluten free - i think some foods although gluten free might agitate the tummy naturally - i’ve been eating a great nut trail mix last few days and notice i feel the dull ache in my tummy under ribs mainly on right side but on left as well - now a bit lower near my belly button but i’m only eating gluten free labeled foods i don’t eat out and i eat lactose free milk and yogurt and very little reg dairy - which has never bothered me -i’m hoping as i heal it will subside 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

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

    • Total Members
      132,814
    • Most Online (within 30 mins)
      7,748

    JaneD
    Newest Member
    JaneD
    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

    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
×
×
  • 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.