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

Need Opinions

Suffering

Recommended Posts

Suffering Newbie
Suffering
Posted

So I need opinions. I'm a 28 year old female. I have suffered terrible stomach problems for about 6 years. I just recently started see a GI about my symptoms because the became so unbearable. My issue is that my symptoms come and go. They'll start and last 6 weeks or so and then get better (don't go completely away) for about a month but during that 6 weeks they're unbearable. I get such bad stomach pain between my belly button and rib cage. Most of the time I end up throwing up but I know if it's cuz of the pain or just another symptom. I have never really correlated it with particular food as it happen everytime I eat. I get really sweaty, heartburn, dizzy, my stomach bloats terrible and I get extremely fatigued. I have always thought it was an ulcer. But the pain feels like my intestines are eating themselves. I get diarrhea but only a couple times a day.

I've had a CT and an abdominal ultrasound which were negative. Then my friend mentioned celiac. I had never thought of that (I'm a nurse so that's crazy). She pointed out that I'm always complaining of my bones hurting like growing pains which is true I feel like my bones ache like when I have the flu. And I get these blisters on my fingers, I always thought the were cold sores on my fingers. I never related these issues to my stomach problems. Anyways my symptoms are at a good point right now. I get slight stomach aches, nothing like it is when it "flares" up. But I also get these sharp stabbing pains, mild, but they're right under my rib cage.

I also have terrible heartburn most of the time. I am scheduled for a colonoscopy and egd next week.

Are these symptoms related to what anyone else has experienced with celiac?

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

Celiac.com Sponsor (A8-M):


moosemalibu Collaborator
moosemalibu
Posted

I had stabbing abdominal pain, bloating, fatigue and diarrhea (just to name a few). Get tested for Celiac. It certainly cannot hurt. 

WinterSong Community Regular
WinterSong
Posted

In short, definitely get tested. Many of your symptoms could be Celiac-related. 

gary'sgirl Explorer
gary'sgirl
Posted

Reading your symptoms first brought to mind "gallbladder attack", in particular the pain that you describe under the rib cage. Is it more to the left or right? I had pain under my mid to right rib cage when I was having gallbladder attacks.

But it might not be gallbladder, if it is though, that doesn't rule out Celiac or gluten sensitivity. My gallbladder problems where because of having celiac disease.

 

Hope you can figure it out soon. Hang in there!

Suffering Newbie
Suffering
Posted
  • Author

Reading your symptoms first brought to mind "gallbladder attack", in particular the pain that you describe under the rib cage. Is it more to the left or right? I had pain under my mid to right rib cage when I was having gallbladder attacks.

But it might not be gallbladder, if it is though, that doesn't rule out Celiac or gluten sensitivity. My gallbladder problems where because of having celiac disease.

 

Hope you can figure it out soon. Hang in there!

Yes that was my first thought to but it's been ruled out.

GFinDC Veteran
GFinDC
Posted

Hi S,

 

Yes, your symptoms do sound like celiac disease.   You should get blood drawn for a full celiac antibodies panel.  Be sure to keep eating gluten (wheat, rye, barley) until your celiac disease testing is complete.  Other tests you should consider are a bone density scan and vitamin and mineral levels.

Suffering Newbie
Suffering
Posted
  • Author

Hi S,

 

Yes, your symptoms do sound like celiac disease.   You should get blood drawn for a full celiac antibodies panel.  Be sure to keep eating gluten (wheat, rye, barley) until your celiac disease testing is complete.  Other tests you should consider are a bone density scan and vitamin and mineral levels.

So I'm have an upper and lower go next Wednesday. Do you think I should still do the blood work or wait for my result from the scopes? I'm kinda torn on it.

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

OMG yes. Me. My autoimmune stuff cycles. One reason I never correlated it with what I ate.

Yes, full antibody panels NOW. Make sure they do celiac biopsies, not just a look.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

So I'm have an upper and lower go next Wednesday. Do you think I should still do the blood work or wait for my result from the scopes? I'm kinda torn on it.

 

If it were me I would have them run the full Celiac panel of bloodtests NOW.  Regardless of how the biopsy comes back you're going to want the bloodtest.  So why not get them both done now and then go gluten-free to see if you feel better?  Once the bloodtests and the biopsy are out of the way I can't think of any reason why not to go ahead and go gluten-free while you're waiting for the test results.

Suffering Newbie
Suffering
Posted
  • Author

Thanks soo much for all the replies! I called and got the blood test ordered today. So first thing tomorrow I'll get them done. Hopefully they don't take to long. I plan to go gluten free right away after my biopsies are done regardless. I'll update my results as soon as I get them!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • 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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.