Gi Doctor Visit

[sillyyak]

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

[eKatherine]

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~]

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 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]

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]

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]

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.