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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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  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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