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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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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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