I have my first GI doctor appointment tomorrow. Does anyone have any tips for me about how I should approach the gluten issue? I'm 97% sure I am gluten intolerant, but there may be other digestive problems as well.

(I'm a little bit worried that I may forget to mention a symptom or be too pushy and offend the doctor or that the doctor will say "you just have IBS" and give me pills and send me on my way or that there are other things wrong with my digestive system that will be overlooked because I'm focusing too much on gluten intolerance.)

Make a list of your symptoms and how they have responded to various treatments you may have tried. Also make a list of your ideas/concerns. It's easy to forget to say things during the appointment.

Good luck.

Would it be insane to bring in this picture to show him how much shorter I was than kids my age when I was in first grade? (Well, all throughout my life, really. The pic is of me in first grade though.)

http://i14.photobucket.com/albums/a317/cha...rony/Joy011.jpg

No, I don't think it is insane. Failure to grow is a symptom of celiac in children. I think you are the second from the left in the picture, and she is clearly short for her age. A picture is worth a thousand words, as they say.

Yes, that's me. I hadn't thought about it in a long time, but until I was about 15 or 16, my shortness made me really self-conscious socially. It was particularly bad until about 6th or 7th grade because I literally look like I was several years younger than all of my classmates.

WTF

He didn't give me a chance to explain things or ask questions, said a lot about Celiac Disease that contradicts everything I've read (and I've read a fair amount about it), said I probably didn't have anything other than IBS because I "look healthy", and even started talking about psychosomatic this and that.

However, all I really expected out of the appointment was the antibody tests, which he ordered (he didn't order the gene test though), and I won't be surprised if they come back negative even though I probably am gluten intolerant.

But... what if I'm not really gluten intolerant after all?

The test should come out correct if you have been consuming gluten,however if there are still doubts ask for a colonoscopy - they can tell by the damage.

Keeping a food log with symptoms - using total honesty for both food eaten and how you feel each day for several months and bringing it to your next apt can diffuse the psychsematic statements that they give. also I have found with multiple GI problems like me, doctors listen to your much better if you have a therapist who you see who says you are balanced and not paranoid. Unfortunately that is often necessary for doctors to believe you. Anything that make you healthy and happy is worth pursuing. GOOD LUCK!

I am so sorry you got such a jerk. I hope he will eat have to eat his words when the tests come back. Make sure you get a copy of those test results in your hands, you have a legal right to copies of all records from your visit also. Including his notes. Some doctors will call a positive result that is only one or two points into positive a negative. Make sure you look at the results and the labs ranges yourself.

Have you thought of going with enterolab to check for antibodies? They can't diagnose celiac but they can tell you if your body is making the antibodies that cause it even if full blown celiac has not yet develped.

Some US doctors are only going to diagnose us when we are extremely ill, they never give a thought to the fact that we could be prevented from getting that way. If testing does not show positive but you feel better on the diet, do it. The diet will not mask any other problems that may be present and it may help resolve or prevent other non GI related problems from being present at all. Don't forget that in the US celiac is only thought of as an intestinal illness, neuro problems with gluten are usually labeled as psychiatic even though the root cause is physical. It is really not unusual for us to get the 'it's in your head, here's a prozac' reaction from doctors here.

I will, thanks for the advice.



I planned on it if I didn't get anywhere going the dr. route. I may just have my son tested with enterolab and if his tests are positive have both of us go gluten free. Or I may go gluten free even if his tests aren't positive and see if I feel significantly better after a couple months.



Yes, I believe that's the problem. WTF does "you look healthy" mean anyways? I don't think I look healthy. My eyes are dull, the area under my eyes is dar, my skin is horrible... maybe I'm not wasting away but for crying out loud, since when does gluten intolerance mean you automatically "look" like you're obviously unhealthy?



I did an experiment where I stopped eating gluten for a short period of time and felt better, but now I'm doubting myself. Maybe I just felt better because I was eating healthier in general? Maybe it really is in my head?



Good point.



Yep, that's the reaction I get for anything I go into a doctor for. "You take psychiatric medications, so this must just be related to psychiatric illnesses. Have you talked to your psychiatrist about this?" Then when I do talk to her about it she looks shock for a second, then shakes her head and asks why that complaint would be related to my mental health. lol

I was under the impression that the blood antibody test often give false negatives.

Can they see damage to the small intestine through a colonoscopy? I thought they have to do an endoscopy to see the small intestine? Either way, the colonoscopy is already scheduled (due to blood in my BMs which I'm fairly certain is just due to constipation).

An endoscopy/biopsy is the test needed to diagnose Celiac Disease through the small intestine. Visual damage can be seen through the endoscope during the proceedure. Several samples are taken at that time for biopsy.

Yeah, that's what I thought.

Yeah, you were right.

Ugh...what a stupid Dr!!! I HATE Dr's like that! I hope your bloodwork comes back positive. Also, it's not in your head! Don't worry, and keep looking for answers until you find them! The one thing I regret the most about this whole going gluten-free thing is that I didn't go to a GI Dr and get scoped, so now I can't get a dx unless I go back on gluten.

Also, if you need, find another GI Dr. Or, tell him to just humor you and take the biopsies anyway. And, if it's negative you can leave and go on a gluten-free diet, but if it's positive...you proved him wrong.

An endoscopy is the test for celiac, not a colonoscopy. If they are doing a colonoscopy have them add the endo on at the same time. If you choose to go that route. Early damage is not always visible on inspection so be sure they take multiple biopsies from multiple places as the damage can be on a microscopic level. Biopsies can miss us for multiple reasons, whether it is because the damaged area is not in the area biopsied or because some early celiac changes are not recognized as celiac related. If you choose to endo you will have to keep eating a full gluten diet until those tests are done.
If having a firm diagnosis is not as important to you as feeling better you could just try the diet strictly for a couple of months and then add gluten back in. That is a dietary exclusion and challenge. It is considered a valid form of diagnosing by some doctors.

"t-Transglutaminase IgG <1 f@" (and it lists 0 - 5 as negative, 6 - 9 as weak positive, and >9 as positive)

"Endomysial Antibody IgA Negative @"

It says the tests were performed at LabCorp in Burlington, NC.

Now is when you try the diet unless he is going to do a endoscopy. Not all of us show up on blood work although many who don't show up in blood do show up in stool testing (enterolab). It is always nice if we can get a clear definative answer through tests but with celiac unfortunately the final answer is often found in response to the diet itself.

Yeah. I think I'm going to do that with my tax return. My son's pediatric GI appointment is on the 25th, so it'll be interesting to see how his results come back. If he tests positive, I'll be doing the diet even if my enterolab test comes back negative. And I may do it anyways even if his tests come back negative.