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hi im new heres my story


Eric1980

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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.


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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 

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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