Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gi Doctor Visit

sillyyak

Recommended Posts

sillyyak Enthusiast
sillyyak
Posted

I will be having my first official GI followup since last year when I first saw a GI doctor. This is a new doctor. What should I expect and what do I need to ask about? Thanks

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


eKatherine Apprentice
eKatherine
Posted

I would think that if you've been hanging out on this board for a while, you already know more than a typical doctor about celiac and real life. Just don't let the doctor decide to run more tests to see if the initial diagnosis was "incorrect", and don't let him get away with telling you to eat gluten again.

Guest ~jules~
Guest ~jules~
Posted
I would think that if you've been hanging out on this board for a while, you already know more than a typical doctor about celiac and real life. Just don't let the doctor decide to run more tests to see if the initial diagnosis was "incorrect", and don't let him get away with telling you to eat gluten again.

I too have my first follow up on the 29th of this month. I agree with you that I probably know more about sprue than the doctor does. Yes, he diagnosed me, but he also said not to worry about testing my children, its not genetic :blink: He also undermined the severity of celiac by saying "oh its just like an allergy" Ugh...I just want to go over my labs again, and he mentioned I had obvious sprue just by viewing the intestine, but we'd have to wait for the biopsies to be 100% My question is how bad is the damage to my intestine?

Guest nini
Guest nini
Posted

I only do my follow ups with my primary care Dr. mainly just to monitor my blood pressure, cholesterol, vitamin levels (absorption), thyroid, and blood sugar... If you are following the gluten-free diet strictly, taking a good gluten-free vitamin, taking probiotics and digestive enzymes, and overall feeling better, there is no reason to follow up with a gi. Seriously, there is nothing more they can do for you at this point UNLESS you are NOT feeling better. If you haven't had any improvement at all in symptoms then yes you need to see a gi, but if you are improving, even if it's not 100% yet you only need to follow up with a general practitioner, they can monitor your general health just fine.

You will learn more here on this site than you will from any visit with a Dr. other than to just monitor your general health.

My last check up was a month ago and I had a follow up this past week... I've been gluten-free for 3 1/2 years, have lost 110 pounds, my thyroid levels are normal, my blood sugars are normal, I'm off just about all of the 20 some odd prescriptions I was taking prior to my dx, my blood pressure was TOO LOW on the blood pressure meds so she had me wean off that (which is why I had the follow up this week and she said I don't need the blood pressure meds anymore), my cholesterol is perfect and I'm no longer depressed or suffer from severe anxiety.

this is just my experience, but I'm sure others have similar stories. point being, if you are sticking to the diet and doing better, keep doing what you are doing and do your follow ups with a general practitioner... you really don't need a gi for the follow up. You do not want to go through a scope to have them tell you if your villi are healed or not IF you are feeling much better... get my point? Of course if you aren't feeling better AT ALL, go to the gi ask why you aren't getting better.

sorry if I'm rambling I'm exhausted from a very busy weekend. Marched in a parade yesterday and took my daughter to audition for Nutcracker today (man was that insane) among other things I've had to do as well...

happygirl Collaborator
happygirl
Posted

FYI:

Dr. Green's book, Celiac Disease: A Hidden Epidemic has a write up about things to consider:

assessment of nutrional deficiencies (to check for things like iron, folic acid, vitamin B12)

"adults patients should have a bone density test, and if osteoporosis or osteopenia are present, should have their parathyroid hormone, calcium, and vitamin D levels measured"

"all patients should have follow-up blood work after a year on the gluten free diet. While most patients have normal levels by that time, some individuals may take up to three years to normalize."

"An adequate yearly physical exam that includes palpating lymph nodes, a breast exam, and a rectal exam looking for blood is recommended. A colonoscopy should be scheduled for patients starting at 50."

Weight and cholestoerol assessment

Hope this helps! Good luck!

BostonCeliac Apprentice
BostonCeliac
Posted

I just had my first follow-up appointment since my diagnosis today.

It was pretty much what I expected, he had told me via email the results of my endoscopy a few weeks ago so I already knew that. He also told me I probably knew more than him because he knows I'm at a computer all day long, plus I basically went in and said, test me for celiac, no, not ibs, no, nothing else, just celiac... and I was right!! haha...

He went over my blood levels pre-diagnosis too (iron, vitamin d, 10 or 12 others) iron levels are SO LOW!! It's amazing I function. He was glad to find out I have been gluten free 1 month tomorrow (Tuesday) - so he re-tested the levels, and will get them tested again in 3 months (with my regular primary care doc). He also told me to take a multi-vitamin every day, which I usually do.

So hopefully the iron will go up! He talked alot about the origin of the disease -- said it was the Irish in my blood (mom's side) that is why I have this.. blah blah. He was very set on this being an Irish/Scottish thing, he said my 40% Italian had nothing to do with it, whatever...

Anyway - the internet & this board seem a much more plentiful source of information, but at least I can figure out how my iron levels are doing there.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,540
    • Most Online (within 30 mins)
      7,748
    Nina J
    Newest Member
    Nina J
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
    • Scatterbrain
      Supplements for those Diagnosed with Celiac Disease

      By Scatterbrain · Posted

      Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise? Thanks
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.