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Upper Gi Results

starrymazed

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starrymazed Rookie
starrymazed
Posted

So I finally got to speak with the NP who ordered my bloodwork and upper GI today, and she confirmed that my blood tests for giladin? were normal. She said that my upper GI showed something, however, I was driving in my car when she called. From what I gathered, she mentioned maybe something being inflamed near the opening of my stomach, and it started with a "d". I asked her to repeat it, but, again, I was driving. The only thing I can find is duodenum, which is a small protion of the intestine that connects to the stomach. I am not sure that is what she said it was. In any case, I told her that I have been gluten free and how much improvements I have had in the last two weeks. She told me that the blood tests are not always reliable for celiac or wheat intolerance, and a gluten-free diet is sometimes the only way to tell. She said that I should continue eating gluten-free, and then said she would talk to the doctor and get back to me tomorrow to see if they want to biopsy my stomach. I am not sure why, exactly, and now I am kinda more confused. I am greatful, however, to have a doctor who seems more knowledgeable than others with regards to gluten intolerence. Has anyone had a similar experience?

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kim26 Apprentice
kim26
Posted

hi!

it sounds to me like they found duodenitis, this means the duodenum is inflamed. sometimes this is just plain ol irritation from GERD, or too many meds like IB profen or motrin. various other irritants. BUT, sometimes its an indication that something else is going on. i was diagnosed with it myself a few years ago after months of trips to the er with severe vomiting and diarrhea and all that good stuff.

anyway, my daughter is a diagnosed celiac and her gi doc says that duodenitis can be an indication on celiac when coupled with other symptoms, i am on the diet with my daughter...and as was predicted by so many on this forum, my IBS, mood, fatigue, and "Duodenitis" symptoms have all gotten better! in spite of my negative blood tests.

i would just talk to your doctor and get as much info as you can! and if the diet makes you feel better i say stick with it!

hope this helps!~K

kayavara Rookie
kayavara
Posted

My experience is somewhat similar.My blood tests and biopsy were both negative.....but when the nurse called to give me the results...she insisted I stay on this diet for 3 months. She explained that tests can be negative and you still may have celiac or wheat intoerance.My biopsy showed gastric mucosal abnormality characterized by erythema. It seemed to be enough ,along with the bloating,fatigue,headaches and a hosts of other symptoms for my doctor to insist on the diet. I was hesitant without concrete proof...but I started it (a month ago now) and I am a new person. Is it Celiac for sure? Can't say...I just know the old me is back and ready to get back into life . Hope it works out for you too.

Kay

starrymazed Rookie
starrymazed
Posted
  • Author

Well, the NP called me today and told me that the doctor definitely wants to do a EGD with biopsy for my duodenum. She told me to start eating gluten again, like a serving a day, and to increase it so I am eating a normal (gluten filled) diet two weeks before the procedure (June 5). I hate to start eating gluten again, but I want to know what is going on. In the past two weeks of being gluten free, I have "tested" myself with small amounts of gluten three times, and each time I had side effects ranging from canker sores, to sharp stomach pains, to the mysterious red bumps I get on my arms and thighs. I have two small children, though, and my daughter has had many stomach and behavioral issues for most of her short life (almost 7). So, I am going to go through with it to see if I can get some sort of diagnosis and take it from there with my daughter. As soon as I have the biopsy, I plan on going back to a gluten free diet, without a doubt. I have seen and felt so many improvements in my skin and my stomach in the past two weeks, and I want to stay this way. :)

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

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      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. 
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      Contact them.
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