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Took Gluten Out And Feeling No Pain

addis001

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addis001 Apprentice
addis001
Posted

So my liver is normal

My poop is normal

My colonoscopy was normal, camera down the throat was normal

The GI calls it IBS... Yeah right...

The pain is only on my right side under my right rib.. My biggest 3 concerns is gluten sensitivity/allergy, a stone in bile duct (no gallbladder), and Sphincter of Oddi Dysfunction(happens when you've had gallbladder removed).

My Grandmother has Celiac. And my aunts and cousins on that side have horrible food allergies.. My brother is allergic to shellfish of all things..

I did Gluten free for about a month now.. and the pain is gone.. I have it once in awhile when I am not careful, because I'm not totally gluten free, just avoiding anything potentially gluten. Basically eating Chicken, rice, rice cakes, fruits, vegetables were just added, V-8 juice, and a few other things. But I have cheated once or twice and felt the pain return. So I hope its not in my head and this might solve my mystery pain, diarrhea, nausea etc...

I see my new GI next Monday.. he is amazing and a wonderful listener.. So I'm hopefully going to get the help i need soon..

Do you think I need to get recommended an allergist? Or stick with GI more?

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cathlaur Newbie
cathlaur
Posted

WOW we could be twins. I am shocked. My Dr had me tested for Celiac and everything came back no. I still had pain on the right side under the rib just like you. She said she thinks it is still Gluten. I have been Gluten free for a month AND OMG I feel awesome. The pain is gone for the most part. I cannot believe it. Who would have thought. So I guess I have a Gluten Intolerance. SO this is how I am eating. I do not find it that hard probably because I do not have to worry about cross contamination.

What a pleasure to feel better. I was so skeptical that this is what it was!

So I am happy to know I can control the pain that was taking over me every single day.

Good luck

Katie

So my liver is normal

My poop is normal

My colonoscopy was normal, camera down the throat was normal

The GI calls it IBS... Yeah right...

The pain is only on my right side under my right rib.. My biggest 3 concerns is gluten sensitivity/allergy, a stone in bile duct (no gallbladder), and Sphincter of Oddi Dysfunction(happens when you've had gallbladder removed).

My Grandmother has Celiac. And my aunts and cousins on that side have horrible food allergies.. My brother is allergic to shellfish of all things..

I did Gluten free for about a month now.. and the pain is gone.. I have it once in awhile when I am not careful, because I'm not totally gluten free, just avoiding anything potentially gluten. Basically eating Chicken, rice, rice cakes, fruits, vegetables were just added, V-8 juice, and a few other things. But I have cheated once or twice and felt the pain return. So I hope its not in my head and this might solve my mystery pain, diarrhea, nausea etc...

I see my new GI next Monday.. he is amazing and a wonderful listener.. So I'm hopefully going to get the help i need soon..

Do you think I need to get recommended an allergist? Or stick with GI more?

Roda Rising Star
Roda
Posted

Did your doctor even test you for celiac with blood work? There is also a good chance if they were not looking for celiac at the time you had your upper scope that the doctor didn't biopsy for it. Or if they did biopsy, then not enough samples were taken. For some reason doctors only like to take a couple and you need a minimum of 8-11 taken just in the upper part of the small bowel alone not counting the samples they take from the stomach and esophagus. Request a copy of all your labs and your report from your scopes. You might just be suprised by what you find or don't find.

If you want to persue more testing you need to be aware that being gluten free and even gluten light can skew the tests. Or if your done with testing continue gluten free. It sounds like it has helped already.

addis001 Apprentice
addis001
Posted
  • Author

Yes being gluten free has helped my energy level, and pain..

Which is funny today and felt my back right rib, and felt a protrusion.. Definitely going to ask GI on Monday's appt.. My biggest fear is that it is a cyst of some kind..

My new GI, I'm going to ask for blood test, a new biopsy test, and a CT scan.. But after going gluten free, and being pain free, I really don't want to go back to gluten and be in pain just so they can test for it.. Its the worst pain ever!

  • 3 weeks later...
loreece Newbie
loreece
Posted

Hi everyone. I'm a new member here. I've been doing a lot of research online because so far, nothing has been found to be causing my right side pain. My pain is located below my right rib cage on the side, the back, and the front. I've had ultrasounds (abdominal and pelvic), a CT scan to check for kidney stones, and numerous blood work that all showed normal. I'm now waiting on a referral to see a GI doctor and possibly getting a colonoscopy and an endoscopy. The pain is more toward the surface of the skin and it's sharp and pinchy. It sometimes moves around and can feel it in the top of my stomach or left side. But those pains subside but the right side pain stick around. It's been over a month now and I am sick of feeling this pain daily. After reading many posts on this site, I am now wondering if I need to start a gluten free diet? Any insight and/or suggestions? Thank you so much!

addis001 Apprentice
addis001
Posted
  • Author

I would try it... I was soooo tired of the pain all the time.. Not knowing how long the episode would last.. I was desperate to try anything...

Now after 6 months of TTC, I am pregnant after just one month on the gluten-free diet.. how crazy is that!!!! With my first we were pregnant on first try.. so taking this long was a surprise to both of us.. but just one month on the gluten-free diet, and we;re pregnant.. I know for sure its celiac..

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    • 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! 
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    • 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.

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      Contact them.
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