My First Ge Visit

[Dixie81411]

Thanks to those of you who have shared your experiences and wisdom, I went well prepared to my visit. Even had a written list of complaints, symptoms (which she didn't even look at). I have had years of diarrhea (often urgent, explosive, mucus) and fatigue. Last few months have been worse, up to 10 times per day, overwhelming fatigue, mild depression, irritability, memory issues, brain fog, several dizzy spells (last week only for the dizziness), bloat after eating, reflux and probably stuff I'm forgetting. Told her the only time in the last 10 years I have felt healthy and strong is the times I've been on a low carb diet. Her response was, "why didn't you just stay on it"?

She wants a colonoscopy, refused the upper endoscopy - "no need for it". She vaguely mentioned Celiac Disease as unlikely after I asked very pointed questions leading her in that direction. I insisted she run the full celiac panel which I had copied from here, but sensing her attitude, told her it was from the U of MD Celiac Center website (we live in MD). That appeased her somewhat but she had to go ask someone what some of the tests were and told me insurance probably wouldn't cover it and the lab won't know what they are!

We are running Full Metabolic Panel, CBC and Celiac Panel along with lots of stool tests. I asked about iron levels as I'm always anemic since childhood. "Won't run those until I see the CBC". Basically she would only address the diarrhea. Referred me to PCP for everything else. Wouldn't consider that they could all be related. Even asked about Vit/Mineral deficiencies since I've had over 10 yrs of D. Said she's not concerned about those as I don't look dehydrated or sick! Grrrr. I now feel the pain of so many of you who have had similar experiences.

Also, she wants me to take fiber and probiotics. On the plus side, the lab tech knew exactly what tests to run as she just did them on herself. The doc did say if I feel better without gluten, "just don't eat it". Yeah, cause that's easy. Note the sarcasm! Her first impression is, wait I bet you know, IBS. Plus, since I get sick with dairy, "just don't eat that either". If the labs lean toward Celiacs, she wouldn't need the endoscopy and would just diagnose me with celiac disease based on symptoms and labs.

So, the labs will also be mailed back to me and I am seeing PCP Friday (so is my 20 yr old daughter I wrote about yesterday). I've never taken fiber. What should I expect with that? If I'm going to react badly to that, how soon would it happen? She said to give it a good 2 wks and if it wasn't helping to just up the dose. Sort of sounded crazy to me. Also said I could see an allergist if I had concerns about a food allergy.

Other than pulling my hair out, do you have any suggestions (other than another doctor, which I'll be looking for)? I hesitate to cancel the colonoscopy since it will take a while to see someone new and I really have no idea what's going on with me (just suspicions).

I will have the PCP run as much as I can push for including thyroid panel. Thanks for your help. Any suggestions are very much appreciated! Dixie

[MitziG]

If it were me, I would refuse the colonoscopy. If they schedule an endoscopy, then let them do colonoscopy at the same time. The endoscopy is where they wud find celiac, a colonoscopy may reveal other issues but if you have celiac, that is probably what is causing the other issues! And it has been my experience that once they find a problem during colonoscopy, that becomes the whole focus and they won't even look at the possibility of celiac.

You are paying for their services. Do not let a know it all doctor call the shots for you!

[GottaSki]

Just makes me angry that we have to fight for tests to rule out a disease that has so many varied symptoms - I was dismissed by so many doctors for decades there were years that I didn't even try to get an answer.

Makes it very difficult to keep fighting for answers - yet we need to.

Personally, I'd switch gastroenterologist before having a colonoscopy -- even if this one you saw did agree to an endoscopy -- I would not trust her ability to biopsy for Celiac Disease.

Your primary can order blood allergy testing. It can be helpful to see an allergist, but for me it was just another in a long line of doctors telling me I was perfectly healthy with all "normal" tests - never mind that I have severe reactions to many foods and I swell/turn bright red in the heat or during exercise - perfectly normal

[pricklypear1971]

Oh goodness.

I agree with both, above about postponing the colonoscopy until you can schedule both together or at least with a doc that will give you a fair shake. I think any long-time member on this board can spot this doc's style a mile away, and she ain't one to be Celiac/gluten friendly. Get your lab results and RUN.

I suggest contacting your local Celiac group and asking for a GI reference.

Probiotics and digestive enzymes won't hurt you or interfere with testing (at least I don't think the digestive enzymes will, I'm on the fence with that one since they break down food, but I really don't know...).

I would personally wait on the allergy stuff. Food intolerances are not allergies, though you could have an actual allergy to a food.

[Newbee]

That doctor sounds awful! I know how hard it is to find a good one. Mine isn't that bad, but in some ways not much better. I was diagnosed as celiac and with the biopsy they found a lot of damage and they already knew I had osteopenia (found that before the celiac), but when I asked about being tested for additional vitamin deficiencies he told me I didn't need to be.

After being gluten free for 14 months I still have a lot of food intolerances which I didn't realize I had at first. One of the things I have the most problem with are fruits and vegetables. I think if I were to even try to take fiber it would make me quite sick with D, so I'm kind of leary about what she was telling you about that. Usually with D they tell you to avoid fiber because it makes the problem worse typically.

I agree with others about not doing the colonoscopy without the endoscopy. There is a GI doc who will do both, but annoying that you have to find another one. Also, as you may know, be sure not to go gluten free until after you've had the endoscopy as it could mess up your results (could lead to a false negative result). Good luck!

[luvs2eat]

I finally started taking fiber caplets after years of transcribing for GI docs... they ALL say to take fiber. And when hubs was diagnosed with diverticulitis, his doc said, "Fiber, fiber, fiber... there's no such thing as too much fiber."

Fiber has sort of changed my life. I had very loose and urgent stools for years and now they're formed, I'm very regular, and will certainly continue them. The dosage information includes taking lots of them for blood pressure control... up to 6 a day... but I just take 2 a day. It helps "bulk" up the stool.

[Aprilelayne]

It helps "bulk" up the stool.

Same here, in our house I throw the fiber granules into the dinner that everyone eats. My husband and son need it to thin things out, but for myself it is to 'bulk' up things.

Fiber works both ways.

I think that the fiber helps with my D issues in that it thickens things up and prevents the acidity from being as noticable as without. Like the 'thickener' absorbs the acidity of the D.

(just my personal experience, probably no scientific proof, just anecdotal)

[mushroom]

If you want to try adding fiber you don't have to load up the gluten. Psyllium husks are great for adding fiber.

[Dixie81411]

Thanks for the input. You all have taught me well so I basically lied to my pcp today to get the lab tests I need (like thyroid panel and vit/min levels). I told her the gastro doc wanted her to order them.

Haven't had a chance to do labs yet as my daughter is back in the hospital (see Daughter in Crisis post). She is now having dizziness, memory issues, diarrhea and chest pain. We now have a great doc on her case but no one wants to look into celiacs. However I lied to her pcp today too and got her to order celiac panel so we can do that in a few days.

DD is not nearly as sick this time and this does not appear life threatening. Thanks again and hope this is all clear as I forgot my glasses and didn't expect her to be admitted today.

[pricklypear1971]

Oh, I hope your daughter improves quickly! I'm sorry to hear she's having problems again.

Great job lying, Mama. .

[frieze]

Some times, ya jus gotta do wha ya gotta do...