Can't Decide

missj · March 2, 2011

I have been struggling with intestinal symptoms now for at least 6 months. I have seen my primary care doc, who jumped to the conclusion of Ulceritive Colitis (no testing done. This was based on the fact my mother had it.) I went to a gastro, who charged me $328 to tell me to eat more fiber (without asking me about my current diet), take Phillips Milk of Magnesia Capsuls and tell me there is no way I had Celiacs because I don't have classic symptoms and blood tests came back negative(I have no idea what kind of tests have been done). She also said it was more likely that I had Ulcerative Colitis-when I brought the point up that I have NO classic symptoms of that, she made it known that everyone presents differently.

I'm so confused. I know something is up but I don't want a bunch of invasive tests or to take a bunch of medicine. I still have all symptoms but now I have diarreah as well from the magnesium oxide (Phillips Capsuls). Should I be getting a new doctor? Should I just cave and get the colonoscopy and endo? So lost at this point.

MsCurious · March 2, 2011

Hmmmm... this is just my opinion, but if you and your doctor are not a team... if your doctor talks "at you" and not WITH you... you should probably find another. They need to listen to you, and give you time to tell them ALL of what is going on. If you like your doctor, make another appointment, and be prepared when you go in. By that I mean, make a list of EVERYTHING that is bothering you and go through the list with Dr.

Some things we don't think are related, in fact really ARE related... in the diagnostic world, and your doctor needs all your symptoms and time frames, etc, to make a good diagnosis. Start at the beginning and make a "timeline" list, and don't stop talking until you've voiced all your concerns, and then ask the doctor, "if it was your body, what would you do? " That usually jolts them back into reality, that you're a REAL person...not just another number. Good luck to you! Feel better soon!

eatmeat4good · March 2, 2011

Since you are here, you must be suspecting gluten could be the problem.

If you don't want to do the invasive tests, you could try going gluten free and see if it helps.

If you want to really know what is going on inside you, you will need to do the tests.

You still may not know for sure as the tests are not 100% accurate.

I decided not to have testing but went gluten free and I'm very glad I did.

I struggled with it for one night reading on this site, then decided if it was possible for it to be gluten that caused my symptoms, then I was going to try eliminating it.

I have never regretted it.

It solved all sorts of things I had as symptoms...things I never dreamed were related.

I was told to take Immodium if I had diarrhea and take Fiber capsules for more fiber. Same story as you. Months and months of Doctoring and no help.

I agree with the Ms.Curious that Dr.'s SHOULD be that way, but in my experience they are not.

If you want to try to figure it out on your own, you could do the gluten elimination and then elimination for other food intolerances like soy, dairy, nightshades, corn, fructose, and the major food allergens.

If you aren't successful with these things then you would have more information for the Dr. and you could then ask for testing.

There is more than one way to approach it, but what you need is a plan hopefully with a Dr. to help you figure out what is going on with your body. Or with an alternative medical person or nutritionist to help guide you. (Or with the help of the brilliant minds here) I have eliminated foods by reading here and it has solved my problems. Maybe you will be lucky and it will be a matter of finding out what foods you are intolerant of.

If you want Celiac testing, I would encourage you to call a NEW Dr. and when you make the appointment tell them just what you put here in this post. I'm having intestinal issues for 6 months now and I would like a complete celiac panel blood test done. If you start with that as your goal for the appointment, you may be more likely to get your labwork done and you could also ask about vitamin deficiency tests to see if you have malabsorption issues common to Celiacs then see what another Dr. says about having scopes and biopsies done. Or ask for them directly if that is what you really want.

I hope you find a Dr. who will listen to you.

It doesn't feel good to be brushed off with Milk of Magnesia when you don't know the real problem.

I feel for you and I hope you get some answers soon, either by food elimination or Dr. elimination!

Smarts · March 2, 2011

I have been struggling with intestinal symptoms now for at least 6 months. I have seen my primary care doc, who jumped to the conclusion of Ulceritive Colitis (no testing done. This was based on the fact my mother had it.) I went to a gastro, who charged me $328 to tell me to eat more fiber (without asking me about my current diet), take Phillips Milk of Magnesia Capsuls and tell me there is no way I had Celiacs because I don't have classic symptoms and blood tests came back negative(I have no idea what kind of tests have been done). She also said it was more likely that I had Ulcerative Colitis-when I brought the point up that I have NO classic symptoms of that, she made it known that everyone presents differently.

I'm so confused. I know something is up but I don't want a bunch of invasive tests or to take a bunch of medicine. I still have all symptoms but now I have diarreah as well from the magnesium oxide (Phillips Capsuls). Should I be getting a new doctor? Should I just cave and get the colonoscopy and endo? So lost at this point.

oh boy - if you hadn't said that your gastro was a 'she' I would have been convinced you were talking about my EX-gastro!!!! I've talked long and hard about this one ever since I was in your shoes back in July. If you want to read my whole sordid history then I posted again the other day on the post diagnosis forum.

What seems to be clear to me is that:

1) There isn't only one symptom of celiacs disease - there are hundreds. Some are quite surprising in fact. Then again there are true Celiacs in the world who have never suffered any ill health from it at all

2) The allergen blood test has too many false negatives, a positive means you are celiac but a negative doesn't mean very much. For there to be any chance of it working you need to be on a high gluten (at least 8 slices of bread per day) diet for at least 8 weeks

3) The most conclusive test for a gluten intolerance is to eliminate all gluten from your diet and see what difference that makes. After at least a month re-introduce gluten into the diet and see if that has any affect.

4) Diagnosing Celiac disease in a patient is a financial suicide to some doctors. No drugs, fewer tests, less doctor visits. There aren't many diseases like that.

I'm also loathe to have any more testing done, so am enjoying better health with a gluten and corn free diet, while trying to avoid the critical opinions of 'friends'. One of my kids displayed all the hallmark signs of Celiacs, she reacts if she eats gluten, but I'm damned if I will let any doctor put her through the barrage of tests I had to endure, only to be told "no you don't have a gluten intolerance" despite all the evidence to the contrary!!

Stick to your guns. You are in good company here.

ravenwoodglass · March 2, 2011

For a doctor to diagnose UC without even doing a colonoscopy is irresponsible and IMHO abusive. If you can't find another doctor who will test give the diet a good strict try and you might strongly suggest to your Mom that she give it a shot also. You never know she may have been misdiagnosed also.

missj · March 7, 2011

Thanks for everyones input. The thing with the doc, is that I did like her personality so maybe I will do as MsCurious has said and ask the question back to her "what would you do?" I never thought of that. I'll give her a second try (she is at the top rated facility in my city) and if it is the smae ol' stuff I'll go on another hunt.

8 Slices of bread a day, eh? At the time I had my first blood test done I was on a low carb diet that didn't include 1/4 of that! I did feel pretty good-the bloating was next to nothing and the constipation was much better. Then my best friend got married and I let my gaurd down around food since I was no longer trying to fit in dress. I ate the bad stuff more often...garlic bread is my biggest food vice.

Can any of you tell me what the blood tests for Celiacs actually are? I have a copy of my medical records and would like to go back through them to see what tests were done. I think I was tested twice but I don't know if it was the same both times or different or if there is even more than one type of blood test for it. Also, what are their norms? Is it just a positive/negative result or a numerical scale?

You guys have been so helpful! Thanks!