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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
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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