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Help Im So Nervous!

lizziebee

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lizziebee Apprentice
lizziebee
Posted

hi, im 13..... and ive always been in and out of the emergency room with chronic stomache pain.... everyone blew me off saying it was just a virus but i new something more was going on.... a little while ago i spent a week in the hospital all the blood work came back negative for a virus....but the docters insisted it was jus a virus.... the pain was so bad i was on a mix of morphene and toradol at the same time... after that a week later i was in the emergency room at one in the morning for the exact same thing.... finally the docter insisted on me get tested for celiac disease and the blood work came back positive i was extatic to know what i had wasnt just in my head but i was heart broken to find out what i had was going to be such a stuggle im going to the hospital for an endoscopy and im really scared.... i would love to have some advice on anything because i dont know anyone with celiac disease and right now i feel like a freak :unsure:

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ravenwoodglass Mentor
ravenwoodglass
Posted

Please try not to be afraid of the endo. You most likely will not remember anything about it. You will go to the hospital and they will give you an IV where they will give you a drug to make you go into a twilight sleep. Some people will remember the spray they will use to numb your throat but most don't even remember that. For me the hardest part was waiting in my room for them to come and get me. When my daughter had it done when she woke up she kept asking me when they were going to do the test.

You shouldn't have any bad effects from the test but some folks will have a bit of a sore throat the next day. The day the test is done you will go home afterwards and likely nap for a bit.

I am glad for you that they figured out what was making you so ill. The diet can be hard to get used to at first but you will.

Do feel free to post in the other sections of the board as they do get read a bit more often. Read as much as you can so you can keep yourself safe and know it can take some time to heal. It is also normal to be a bit angry and depressed about the diagnosis but that will pass. I hope you feel better soon.

shopgirl Contributor
shopgirl
Posted

You're not a freak. One in a hundred-something have Celiac Disease. Hardly staggering odds.

And I've said this before about the endoscopy: I'd rather have an endoscopy than an annual dental cleaning. It's much shorter and more comfortable. :)

ElseB Contributor
ElseB
Posted

I agree with shopgirl - the dentist is worse. All I remember was the numbing spray tastes kinda gross, and that I was in a weird twilight during the procedure and remembered nothing afterwards. My biggest concern throughout the whole thing was whether my mom was going to hear them calling her name to tell her that I was done, because she's hearing impaired. It was a piece of cake (a gluten-free one that is :D ).

rosetapper23 Explorer
rosetapper23
Posted

You might try checking out this group of teens who have celiac disease--they're a nationwide advocacy group for teens with celiac:

Open Original Shared Link

Lots of support there!

lizzy951 Newbie
lizzy951
Posted

hi, im 13..... and ive always been in and out of the emergency room with chronic stomache pain.... everyone blew me off saying it was just a virus but i new something more was going on.... a little while ago i spent a week in the hospital all the blood work came back negative for a virus....but the docters insisted it was jus a virus.... the pain was so bad i was on a mix of morphene and toradol at the same time... after that a week later i was in the emergency room at one in the morning for the exact same thing.... finally the docter insisted on me get tested for celiac disease and the blood work came back positive i was extatic to know what i had wasnt just in my head but i was heart broken to find out what i had was going to be such a stuggle im going to the hospital for an endoscopy and im really scared.... i would love to have some advice on anything because i dont know anyone with celiac disease and right now i feel like a freak :unsure:

The nerses were very nice and the worst part us getting the IV in.

  • 1 month later...
WinterSong Community Regular
WinterSong
Posted

I'm recently diagnosed, as well, and had my endoscopy two weeks ago. Don't worry, it's very easy. You just go to sleep for a half hour and when you wake up you won't remember a thing. I made the mistake of eating too much before mine. They said that I'd be ok if I ate 6 hours beforehand, and even though I had only a light snack my stomach didn't empty out (my mother's stomach is slow to empty out, too, I found out). So I had to get it done again, and that time I didn't eat for 15 hours. It went really well - I only wish it had gone really well the first time around!

My best advice is to just relax and make sure you don't eat at all that day. And remember - you've already been diagnosed via blood test, so this is a good thing! You've found out what's wrong, and you're on your way to feeling better!

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    • knitty kitty
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      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.

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      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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