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Saw A Gi Finally - Well Not Really

angelschick

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angelschick Apprentice
angelschick
Posted

Finally had my appointment with the GI today and have an upper GI with biopsy scheduled for Feb4th at 5:30 P.M. I'm not feeling this place and just wanted to get a feel for how "normal" this is. I didn't see the Doc at all, didn't even meet him. We watched a video (from 1980) and when it was over I asked questions to the lady behind the desk. 1) how many biopsies will be taken - her answer was "well i would assume one would fine" Umm no - I want a real answer please find out and call me 2) I addressed the meds given - I have issues with meds not being enough - woke up during one surgery, felt another and the amnesia drug didn't work at all and pain pills are a joke to me most of the time. I realize this isn't really surgery but Demerol isn't going to touch me and this doesn't look like a cozy, easy procedure. It's not at a hospital - it's a GI center and they do them right there. I would not even meet the Doc who would be doing the procedure. I asked if I would be able to speak with anyone regarding my fear of meds not working she told me yes the nurse. So - is this normal???

Ready for this to be done already!

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I have had 2 endoscopies without any anesthesia whatsoever(unless you count the throat spray), and can assure you that, while it isn't pleasant, there is no pain whatsoever.

According to my doctor, the anesthesia is for the convenience of the doctor, not for the benefit of the patient.

ang1e0251 Contributor
ang1e0251
Posted

I don't want to scare you but to be honest, I don't think I would have the endoscopy without talking to the dr. I had one, for gallbladder rule out symptoms, but I was nervous enough and talking with the dr eased a lot of my fear. It was really no big deal but I reacted normally to the drugs and it sounds like you are a special case.

missy'smom Collaborator
missy'smom
Posted

I went to a cardiologist this year and it was only slightly better than that. I would trust your instincts. If you are not comfortable then find someplace else. I will be because my concerns were ignored and I had a bad experience and my instincts ended up being right. Or make sure you advocate for yourself, you know yourself best. In the end I insisted on some things and even though they were reluctant, they listened and I got what I needed.

angelschick Apprentice
angelschick
Posted
  • Author

I went ahead and stuck with this guy. They put me on a cancellation list and I had it done this AM. He was actually really nice and reassuring when he saw I was scared. It went fine despite my fears - I remember nothing!! So at least its over.

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  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      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.
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