Someone Please Just Tell Me What To Do!

[JenP]

For those of you who read and responded to my topic last week "My Doc is the biggest Jerk", thank you. It was excellent advice from everyone, however, I need more help so I am back. Just a recap, Doc #1 ran a two panel blood test, Anti-gliadin (came back negative) and transglutamasine tissue (came back a very positive 69). Biopsy was negative, though he dismissed that rather quickly because he felt that he could have easily sampled a healthy piece of intestine. I don't know how many biopsies were took. He also mentioned that a small portion of my intestine was red and inflammed. He told me to go gluten free and call him in a month. By the advice of others and my own instinct was to get a second opinion. Crohn's disease runs in my family, and my grandfather died at 50 from stomach and colon cancer. Off to Dr. Ego I went, who treated me like sh*t and basically told me I could have anything. He also mentioned that doc#1 did not run all the appropriate bloodwork screening for celiac and he would never tell someone to go gluten free based on my results. He ran the endomysial screening and said if it came back positive it was very likely I had celiac. If negative very unlikely I had celiac. I'm scheduled for a colonoscopy in two weeks. He wants biopsies of my colon, and would want to probably do the endoscopy over, because he wasn't sure how many biopsies were took, and if he sampled from the right areas.

Well, the nurse called me and aid endomysial was negative. She kind of laughed and said, "Well that's great news, that means you can still eat bread!" In the meantime I'm thinking, yeah great, it's not celiac, it's something else than that could be worse, like Crohn's or colitis! I said to the nurse I didn't understand how I coud have had such a positive result on the previous bloodwork, and now this one negative. She says, "Well, I know this may be hard to believe, but labs do make mistakes sometimes!" Again, I'm just thinking, ok, which lab made the mistake then. This Dr. made no bones about it with me that he was going to heavily rely on the endomysial versus the TTG.

Not that I want to be a celiac, but I was almost hoping for a positive bloodtest. I'd have my answer, I could go back to my old doc who I liked, but just felt he was a little too hasty to diagnose me on 1 suspicious bloodtest, I could cancel my colonoscopy, and move on. Now, I have to worry do I have Crohn's or colitis? Dr. Ego even said, he could do the colonoscopy and find nothing! I could have irritable bowel (Which I have been told more than once before) on top of some virus, or something else to throw off my bloodwork. What I do know, is that I think Dr. Ego is too busy for me. He's supposedly "the best" and people wait many months to see him. When I saw him, there was over a 2 hour wait, and everyone in the waiting room looked VERY, VERY sickly. Family members were crying, it was ugly. As much as I hate to admit it, he seems to be exhausting every possibility and made some valid points. He probably is an excellent Dr., I just can't stand him though. Everyone has a different opinion on what to do....

Suck it up Jen, he may be a jerk, but if he knows what he's doing, that's what's important. Get the right diagnosis.

Go back to Doc #1 and tell him what's going on and see how he reacts to the new information.

Call my family doctor (who I happen to love and he was the one that push me to the front of the line to see Dr. Ego when there was a 4 month wait) and see what he thinks.

Get a new doctor. I was referred to one by a family who absolutely adores him, and he's supposed to be excellent. There is a one month wait to see him. He's a far drive, but it may be worth it.

I feel like there's pro and cons to every scenario. I'm just so tired and frustrated right now and I've spent days just wallowing about what to do.

Any thoughts you guys have, whether it's on the bloodwork discrepancy or the doc situation would be appreciated.

[mommida]

IMO Great doctors are the ones who listen to their patients. Go back to the doctor you feel comfortable with, if he feels you should be with a specialist pull out refferal for the new doc your friend loves.

L.

[ravenwoodglass]

You had a high positive on your tTg, you are at least gluten intolerant if not celiac. You got lucky with your first doctor, and an a-- for the second opinion (IMHO). I would go back to the first doctor and stay with him. I would also go gluten free and then if you still feel you want the colonoscopy or your over 50 get one. But the relief from the diet may be enough so that you don't feel you need one anymore. I would definately use a different GI for the procedure though.

[Guest nini]

I would go back to Dr. #1 AND go gluten-free and see how your body responds to the diet... give yourself a good month or more on the diet to see if you notice any improvement in symptoms. Dr. #1 can monitor your progress and advise you if you need further testing for other conditions. The tests IMHO are subject to interpretation and not sensitive enough for all cases of gluten intolerance. Gluten intolerance can be the cause of IBS or can aggravate it, so keep that in mind. Also, I firmly believe that positive dietary response is the best diagnostic tool there is. If you do well off of gluten then you have your answer, if you do not improve at all, you can still pursue other testing. But the only reason to continue consuming gluten would be if you feel you have to pursue imperfect testing. Just my opinion but I feel you are better off with Dr. #1 that listens to you and just see if your symptoms improve on the gluten-free diet. What can it hurt to try it? After all, the diet is the only treatment for celiac if indeed that is what you have.

[Guest greengirl]

My blood test and biopsy were negative, but I had all the classic celiac symptoms so I did the Enterolab stool test. It showed that I was gluten intolerant and that I had 2 copies of the celiac gene. I then took this information back to my GI doc and he accepted it as evidence of Celiac.

As you mentioned, Crohn's is a concern for me, as well, because I have ulcerations in my small intestine (found through the camera capsule). I don't have the bleeding or fever that often accompanies Crohn's, though, and it doesn't run in my family. Basically, there's evidence for both, and my doctor doesn't know which it is either. In any case, going gluten free helped me tremendously and I've taken it one step further with the Specific Carbohydrate Diet in an attempt to heal the ulcers.

At this point my focus is on healing, rather than on pinpointing Celiac or Crohn's. Maybe the Enterolab test would give you the peace of mind to go gluten free. Also, the camera capsule might rule out Crohn's for you.

Christine

[Nancym]

... he would never tell someone to go gluten free based on my results.

I always think this is so bizarre. What do they think will happen if you go gluten-free and see how you feel, your nose will fall off? Ultimately there just is no good test that can tell you whether or not you are sensitive to gluten but not so far along you have damaged villi. That's the role a dietary test (of exclusion) can play. Gosh, a few weeks of changed eating that could possibly save you from colon cancer in middle age? Seems like a common sense to me.

I didn't have a biopsy, basically my first indication I had problems with gluten was how much better I felt when I wasn't eating it. I did follow up with Enterolab just because I was curious, but I was pretty content to let my dietary results dictate what course I should follow.

Good luck!

[rmmadden]

Jen,

Based on my experience I have come to understand that medicine is not the exact science I once thought it to be. Doctors are guessing based on any number of variables. Guess right and order the correct tests then you've got a good doctor. Guess wrong.....well, we've all been there.

Your best bet is to listen to what your body tells you. Going gluten-free for a while won't harm you any and if you feel better then you know you're on to something.

Best of luck!

Cleveland Bob