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Could Use Some Prompt Advice/thoughts

mhb

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mhb Apprentice
mhb
Posted

Been off gluten and dairy since June (plus soy, beans, eggplant and potatoes). Bloating and constipation vastly improved, periods now regular and acne all but gone. Using Florajen 3 about three weeks now. Digestion even better. Ditto tryptophan for sleep. Sometime in last 4 weeks or so I started "silent" GERD (no pain or heartburn - just like a bubble of acid or food in upper esophagus, sometimes worse than others - just at the annoyance level). I've never had this. I have a high deductible plan and have used the deductible this year, so I have a window to do an upper GI for this, but isn't it premature, or can visible GERD-related damage have occurred already? I never had the celiac test, but I've been gluten-free for 5 mo. now. On the other hand I could have it done simultaneously for the heck of it. I leave town 12/17 for the month, so really have a tight window to request an upper endo and get in their schedule if they can fit me. Still, hate to do it if not likely to show anything. Can anyone help me think this through?

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ravenwoodglass Mentor
ravenwoodglass
Posted

If you have been gluten-free since June then the endo will be useless for diagnostic purposes as far as celiac goes. You really should have had it before you went gluten free. Were you diagnosed by a positive celiac panel? If you were a rerunning of the panel may tell you how you are doing on the diet and healing. There is no reason not to have an endo to look for other issues but for celiac diagnosis it is too late without at least a 3 month gluten challenge.

dizzygrinch Enthusiast
dizzygrinch
Posted

hello, that i would say something as well. I am not diagnosed yet, but do feel a lot better, being gluten free for a couple of months now. Do I understand correctly, you still have GERD? my GERD has improved, but I still have symptoms. I have noticed, that for me, ANY citrus, oranges, tangerines, anything, will increase my heartburn. I cant do any soda, nothing bubbly. NO juice, no seasonings, especially pepper. Tons of things will bring on the heartburn and GERD symptoms, I even had a endoscopy last year, that showed evidence of "healed peptic ulcer disease" whatever that means, so I just have to watch everything I put in my mouth. I would to the endoscopy too, however, just to rule out any other problems...

mhb Apprentice
mhb
Posted
  • Author
hello, that i would say something as well. I am not diagnosed yet, but do feel a lot better, being gluten free for a couple of months now. Do I understand correctly, you still have GERD? my GERD has improved, but I still have symptoms. I have noticed, that for me, ANY citrus, oranges, tangerines, anything, will increase my heartburn. I cant do any soda, nothing bubbly. NO juice, no seasonings, especially pepper. Tons of things will bring on the heartburn and GERD symptoms, I even had a endoscopy last year, that showed evidence of "healed peptic ulcer disease" whatever that means, so I just have to watch everything I put in my mouth. I would to the endoscopy too, however, just to rule out any other problems...

I never had the GERd until recently, long after removing gluten. It's mild. I noticed it right after swallowing a gelcap pill this morning, and it seemed to come back after reading your post and thinking about it! ;-)

ravenwoodglass Mentor
ravenwoodglass
Posted
I never had the GERd until recently, long after removing gluten. It's mild. I noticed it right after swallowing a gelcap pill this morning, and it seemed to come back after reading your post and thinking about it! ;-)

What was in that gelcap? It may be something your body doesn't like or if you didn't drink enough water, a full 8 oz glass is ideal to help the pill get all the way to the stomach, it may have been irritating. If you didn't drink enough when you took it it may have dissolved before it was supposed to.

mhb Apprentice
mhb
Posted
  • Author
What was in that gelcap? It may be something your body doesn't like or if you didn't drink enough water, a full 8 oz glass is ideal to help the pill get all the way to the stomach, it may have been irritating. If you didn't drink enough when you took it it may have dissolved before it was supposed to.

This may be it. This morning when I noticed an immediate reaction I downed about 10 oz of water. I'll keep working this hypothesis and see what happens. meanwhile, see the 11/15/08 article on this site titled "'Atypical' GI Symptoms on the Rise Among Gluten-Free Celiac Patients":

"The team noted that the gastrointestinal symptoms experienced by group I differed from those present at the time of their celiac disease diagnosis. 6 patients from group I experienced anemia/diarrhea/weight loss, while ***12 experienced symptoms similar to gastroesophageal reflux disease***, and 24 patients experienced abdominal pain and/or constipation."

https://www.celiac.com/articles/21688/1/Aty...ents/Page1.html

mhb Apprentice
mhb
Posted
  • Author
What was in that gelcap?

Oh ya, 15 billion probiotics (Floragen 3). They don't say drink with water but I will now and see if that helps.

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

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      @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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