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Do Doctors Really Know Best?

SadiesMomma

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SadiesMomma Apprentice
SadiesMomma
Posted

I am FINALLY on the roll of getting things taken care of for me physically, mentally, all togehter Im trying to make a better life for me, my honey, and my little girl.

I finally gor my family physician (whos a whole crock of s$#&e if you ask me) to refer me to a specialist! Its only taken me YEARS to get her to do so.... Uuuugh, This damn disease is sooo annoying. Obviously IM not getting better so let me see someone who knows what he heck theyre doing. Do you guys ever feel like that?

Anyway, I went to see the gastro doc day before yesterday. He gave me some pamphlets on Celiac and we talked a little about it. Nothing really that I didnt already know. He wants to do a colonoscopy (eventhough ive been on a gluten-free diet for over a year), and he also wants to do an upper Gi endoscopy. Any of you had these both done? What are they like? Scarey? Did the phosphasoda make you sick????

Im am soooo scared of the procedures, as well as the possible news I can find out. I want to hear something thats not horrible.... not like colon cancer, stomach cancer or something. My mom and brother both have stomach cancer. Is that possibly hereditary, I mean like my odds, are they higher because they both have it?

I am sooo confused with all of this. I NEED A HUG!!!! I just need to hear that Im not in this alone!!!!

Thanks for listening to me rant and nag.

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Lily Rookie
Lily
Posted

Heather,

I've had both procedures done and they are painless. The medicine they gave me to put me under put me out like a light and I have no memory of it. I came home and had the best nap I've had in years :). I have to have a follow up biopsy in 6-8 months to see if my villi are growing back. I had a barely noticeable sore throat the next day but those were the only side effects I noticed.

I wanted to have everything looked at so I could know where I stand. I too was/am scared of cancer and glad they were looking around. Better to know what you're dealing with than to wonder what it could be, don't you think?

Here's a big hug :).

Lily

Dwight Senne Rookie
Dwight Senne
Posted

Hi Heather,

Ditto to everything Lily said!

I had both "scopies" done at the same time. Piece of cake. Don't remember a thing. Zero problems afterwards.

Generally speaking an Upper GI and an Endoscopy are two different tests. The Upper GI test involves drinking a barium solution while having xrays taken. The Endoscopy, of course, is the camera down the throat to examine the stomach and small intestine. I have also had the Upper GI test and other than the somewhat yucky tasting barium, it wasn't bad at all.

I completely understand about your anxiety over these procedures. I felt the same way. But now that I have had them, I realize my anxiety was baseless. I would consent to have any of them done again in a heartbeat. And this time I wouldn't worry a bit! So here's two hugs for you! :):)

On a darker note, I'm no doctor, but yes, I do think you are at a higher risk for cancer because of the family history. Sorry :( And no, disowning them won't help!

You probably realize that it is doubtful that your doctor will be able to make a Celiac diagnosis from these procedures since you have been gluten-free for a year. I imagine he just wants to rule out other problems. Also, since I'm being a nit picker anyway, it is the Endoscopy that is used to diagnose Celiac, not the Colonoscopy.

Good luck!

kyss Rookie
kyss
Posted

Heather,

I am new to this board and I too have an endoscopy scheduled soon. I am also nervous, but my mother who had both endo and colonoscopy at the same time said it wasn't bad. I am going to do the test first so I know what to expect for my girls (11 & 7) if they have to have one done too. I hope everything goes well with your tests.

Here are some hugs too from me and mine. :):):):)

Kelly

SadiesMomma Apprentice
SadiesMomma
Posted
  • Author

Good luck to us all! :D

angel-jd1 Community Regular
angel-jd1
Posted

Best Wishes to you all!!

The worst part of the scopes is the prep. I had to drink some nasty liquid!! BLEH!! It was very gross!! I did wake up during my scope. I layed there and watched it on tv. :blink: I didn't feel a thing though!! If I can say that I woke up during the procedue and STILL say the worst part is the prep...don't worry!! Everything will be fine. Just think of it as a step in the right direction twards a healthy life.

-Jessica :rolleyes:

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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! 
    • 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.
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