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

Anyone Had A Different Kind Of Stomach Pain, In Addition To Celiac?


sherwing01

Recommended Posts

sherwing01 Newbie

Hi everyone,

I'm looking for someone who might have been in my situation and actually found answers. I was diagnosed with celiac 3 1/2 years ago and went gluten-free. About a year later, I was finally feeling well again. I felt better than I had ever felt before. I was doing great for a couple of years, feeling healthy, doing well with the diet, and just excited.

Then, this stomach pain started. Not the lower down pain that I had before and just after I was diagnosed, but higher up just under my rib cage. Pain and extreme nausea hit me at seemingly random times... could be after I eat, just when I wake up, in the evening, doesn't seem to have a pattern. I've been dealing with this for almost a year now, and they still have no answers for me. I'm tired of hearing doctors say, "Other than the celiac disease, you are a completely healthy person!" Has anyone else ever had these problems and found an answer or at least a remedy for them? I'm tired of being sick all the time, again! I got a glimpse at the healthy life, and I'd like to have it back.


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



Celiac.com Sponsor (A8-M):



JulesH Rookie

I had this for a few months recently. It wasn't nausea but there was a sharp, stabbing pain at random times through out the day. I had a whole battery of tests run, and they didn't find anything. After about three months of this, it just sorta went away on its own. (Two things that may have contributed to it going away: I bought a journal to keep track of everything I ate and the pains to find any sort of relationship. Right after buying that, of course the pains stopped. :rolleyes: Second thing is that my mom bought me this royal jelly stuff and had me take it for a while. My doctor told me that I can tell her it was definitely the royal jelly, even though he doubts it. ;) )

ravenwoodglass Mentor

In my case I developed that sort of pain from soy. It was kind of a surprise to be feeling ickky again so I did enterolab testing and when I cut out soy that did the trick for me. Something that would help alot before I found out what was causing it was Pepto Bismal Liquid. One dose would usually stop it really quick.

I also take Royal Jelly that Jules mentioned almost everyday. One thing it has is an antibacterial action in addition to being high b vitamins and all kinds of other good stuff. It has done wonders for my hair, appetite and energy levels too. I got keyed into it through looking into Oriental Healing Foods and Acupuncture/accupressure and decided to give it a go as it is highly recommended. Most US docs are not to familiar with nonpharmacutical methods of healing so it is not surprising that one would think it had nothing to do with someones improvement.

Aleshia Contributor
Not the lower down pain that I had before and just after I was diagnosed, but higher up just under my rib cage. Pain and extreme nausea hit me at seemingly random times... could be after I eat, just when I wake up, in the evening, doesn't seem to have a pattern. I've been dealing with this for almost a year now, and they still have no answers for me.

hi, I haven't been diagnosed with celiac yet but am in the process of testing... just found out I have gallstones (which are linked to celiac) anyway for 9 years now I have been getting pain under my rib cage at random times... dr just had an ultrasound done and gall bladder is full of stones. guess that is what the pain is from... gonna find out about the laser blasting surgery thing where they get rid of the stones but not the gallbladder. in the last few months I had noticed that chocolate would set it off... and then the last 2 major attacks were within a few hours of eating icecream. then just yesterday I read that gallbladder attacks are often caused by chocolate and dairy (esp. icecream) along with other things like coffee and fried or fatty foods. anyway, maybe you should get a dr. to look into the gallbladder thing.

hope you get it worked out soon... It was 9 years for me!

sherwing01 Newbie

Thanks, I actually went and got a gallbladder ultrasound done this morning. I'm still waiting to hear the results from the doc, but I'm hoping that's what it is since I'm running out of possibilities. Hope you get to feeling better! I remember the time of testing for celiac, I had a total of 4 different tests. I remember the days in the hospitals and labs, but once you get to feeling better you realize it's all worth it!

hi, I haven't been diagnosed with celiac yet but am in the process of testing... just found out I have gallstones (which are linked to celiac) anyway for 9 years now I have been getting pain under my rib cage at random times... dr just had an ultrasound done and gall bladder is full of stones. guess that is what the pain is from... gonna find out about the laser blasting surgery thing where they get rid of the stones but not the gallbladder. in the last few months I had noticed that chocolate would set it off... and then the last 2 major attacks were within a few hours of eating icecream. then just yesterday I read that gallbladder attacks are often caused by chocolate and dairy (esp. icecream) along with other things like coffee and fried or fatty foods. anyway, maybe you should get a dr. to look into the gallbladder thing.

hope you get it worked out soon... It was 9 years for me!

AJJ Newbie

Have you looked at foods that contain lectin rather than just gluten? I have a sensitivity to tomatoes which is a nightshade food (others include potatoe, peppers and egg plant). Nightshade foods contain lectin. Gluten also contains lectin. Nightshade foods can cause an autoimmune response in those who are sensitive.

Good luck...

kehaulani Newbie
Hi everyone,

I'm looking for someone who might have been in my situation and actually found answers. I was diagnosed with celiac 3 1/2 years ago and went gluten-free. About a year later, I was finally feeling well again. I felt better than I had ever felt before. I was doing great for a couple of years, feeling healthy, doing well with the diet, and just excited.

Then, this stomach pain started. Not the lower down pain that I had before and just after I was diagnosed, but higher up just under my rib cage. Pain and extreme nausea hit me at seemingly random times... could be after I eat, just when I wake up, in the evening, doesn't seem to have a pattern. I've been dealing with this for almost a year now, and they still have no answers for me. I'm tired of hearing doctors say, "Other than the celiac disease, you are a completely healthy person!" Has anyone else ever had these problems and found an answer or at least a remedy for them? I'm tired of being sick all the time, again! I got a glimpse at the healthy life, and I'd like to have it back.

hi. i'm new to this...i was diagnosed with celiac disease just two months ago, but i have been on a gluten free diet for three months now. it was only a few weeks after i was diagnosed that i started having a strange stomach pain. it sounds like the pain that you are experiencing...higher up, just under the rib cage. my doctor thought it might be gallstones, so i had an ultrasound done. everything came back normal. i still have not found relief from the pain. my doctor perscribed me two different medications, the first seemed to help with the pain and the second not so much...but i stopped using both of them due to the side affects (dizziness, blurred vision). i also experience random waves of nausea too. it's all very unpredictable. sorry i can't be of much help, but if you find any answers please let me know! thanks!

also, i was wondering how long it took you all to start feeling better. i'm not expecting an instant cure but like i said earlier, i've been gluten free for 3 months and have not had any relief from my symptoms. oh, i was also diagnosed with lymphocytic (microscopic) colitis about 3 years ago. i was told that lymphocytic colitis and celiac disease sometimes go hand in hand...does anyone also have lymphocytic colitis?


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



Celiac.com Sponsor (A8-M):



sherwing01 Newbie

Hi! I also found out that my gallbladder ultrasound came back normal as well, which was rather disappointing I must say! I've decided to start a food journal, to see if it's at all food related, and try an elimination diet over the summer. I'm a grad student, so trying anything new in the last few weeks of the semester is crazy. I'll let you know if I discover anything if you do the same :). What was the medication that helped with the pain but had side affects? My doc gave me NuLev (or Hyoscamine is the generic), but it never helped.

It took me a while to start feeling better, with the gluten-free and celiac related stuff. They think I was symptomatic for at least 5 years prior to diagnosis (take approx. 2 years before I started having issues with anemia), so it took me almost a year to start feeling better. It was the most frustrating year, being gluten-free and still no relief from symptoms. But it does get better! Hang in there!

hi. i'm new to this...i was diagnosed with celiac disease just two months ago, but i have been on a gluten free diet for three months now. it was only a few weeks after i was diagnosed that i started having a strange stomach pain. it sounds like the pain that you are experiencing...higher up, just under the rib cage. my doctor thought it might be gallstones, so i had an ultrasound done. everything came back normal. i still have not found relief from the pain. my doctor perscribed me two different medications, the first seemed to help with the pain and the second not so much...but i stopped using both of them due to the side affects (dizziness, blurred vision). i also experience random waves of nausea too. it's all very unpredictable. sorry i can't be of much help, but if you find any answers please let me know! thanks!

also, i was wondering how long it took you all to start feeling better. i'm not expecting an instant cure but like i said earlier, i've been gluten free for 3 months and have not had any relief from my symptoms. oh, i was also diagnosed with lymphocytic (microscopic) colitis about 3 years ago. i was told that lymphocytic colitis and celiac disease sometimes go hand in hand...does anyone also have lymphocytic colitis?

kehaulani Newbie
Hi! I also found out that my gallbladder ultrasound came back normal as well, which was rather disappointing I must say! I've decided to start a food journal, to see if it's at all food related, and try an elimination diet over the summer. I'm a grad student, so trying anything new in the last few weeks of the semester is crazy. I'll let you know if I discover anything if you do the same :). What was the medication that helped with the pain but had side affects? My doc gave me NuLev (or Hyoscamine is the generic), but it never helped.

It took me a while to start feeling better, with the gluten-free and celiac related stuff. They think I was symptomatic for at least 5 years prior to diagnosis (take approx. 2 years before I started having issues with anemia), so it took me almost a year to start feeling better. It was the most frustrating year, being gluten-free and still no relief from symptoms. But it does get better! Hang in there!

the first medication was Symax duotabs and those helped with the pain. i just felt like i wasn't ever fully awake and my eyes couldn't focus on anything. the second was hyoscyamine that i dissolved under my tongue. it didn't help and i had pretty much the same side affects as the other one. it made feel like i was going to pass out...and that's never good!

i started to have symptoms when i was 15 and i'm 23 now...so it took a while for my diagnosis. i have a feeling it's going to take at LEAST a year before i start to feel better...thanks for the encouraging words!!

jerseyangel Proficient

I had terrible upper abdominal pain/reflux after being gluten-free for a while and discovered it was caused by legumes.

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.