Positive, Negative, Really Confused

[moonunit]

Hi, I wrote a while back on another thread about my situation, but I have more information.

Here's the deal:

1993 bowel resection, pathology lab says Crohn's.

I take 12 pills a day for the next 9 years, which seem to do nothing but I take them dutifully.

2002 I ask for a colonoscopy from a different gastro to confirm Crohn's diagnosis. He says there is no evidence of Crohn's and suggests that I may never have had it. Takes me off the meds. My condition stays the same.

2004 after the birth of my daughter and son (in 2005) my abdominal symptoms get considerably worse.

2006 my aunt is diagnosed with celiac disease, my entire family says "wow, look at the symptoms, it's totally you, you should go get tested too!"

The rest happened this month:

My dad had the gene test, came back positive

I had the blood work, came back positive and my primary care set up an appointment with the gastro

I met with the gastro, who looked at the blood results and said "nah, you don't have celiac disease, you have Crohn's." Told me to go on a high-fiber diet and said my blood work was only borderline positive. But he did set up a biopsy anyway. Plus a small bowel x-ray for the Crohn's. The x-ray came back normal.

Had the biopsy on Monday. Asked him at that time for a copy of the blood work. He refused, but did tell me that one of my numbers was 33 (and that negative was up to 30). Based on what was written on the lab request, I know the test was the IgG and IgA AGA, and on the web it says that 20-30 is borderline and 30+ is moderate to strong positive. I pointed out that the numbers DID come back positive according to my primary care, and he said "she's not an expert, I'M an expert." He was really huffy and kind of a jerk, though I don't know that that makes him less competent as a physician, right?

He did the biopsy, which he said he "had to rush through because I was wrestling him" under anesthesia. He had me set up an appointment for two months from now.

Today I got a call from someone at his office, saying that my biopsy was "totally normal" and that "this is as far as we go with the celiac thing." She said if I wanted more information I should speak with my primary care and she would explain it all to me. I asked what about getting medication for Crohn's if that's what I have, and she said to just talk to my primary care.

So that's that. I'm in the San Diego area, and there are a lot of really good celiac experts here. I guess what I'm wondering now is whether to stay on the normal diet and try to get a second opinion from one of them, test the gluten-free diet and then what, if it works, my doctor has already decreed I don't have celiac disease so does it really matter? As far as insurance, I'm stuck because all the gastros covered under my plan work in the same office as he does.

I guess the main issue is that I'm second-guessing myself like crazy. I know people see a zillion doctors before they're diagnosed, but what if I actually DON'T have it? Wouldn't that be nuts to keep asking until I find someone who will tell me that I do? I'm also worried about my kids and whether they might have it. Again from the pediatrician I got a "nah" and he won't test them.

I just don't want to be one of those angry bitter people who was sick for another decade, but I also don't want to be the difficult patient who self-diagnoses in the face of medical expertise to the contrary.

Got any encouraging words?

[Guest nini]

talk to your primary care Dr. that said your results were positive. Personally, I think that GI sounds like an arrogant jerk and reminds me of the arrogant jerk that misdiagnosed my daughter as having IBS (at age THREE!) and told me to feed her more whole wheat (the very thing that made her break out in hives all over.

Celiac is genetic, if you have family members that have it, the odds of you having it are really really high. In my opinion how you respond to the diet is the most conclusive diagnostic test there is. So ask your PCP if she would support you in a dx of Celiac based on positive bloodwork (which you have) and positive dietary response (If you respond positively to the diet, which I suspect you will) along with the genetic factor.

I wouldn't bother going back to that arrogant GI or any other GI for that matter. Yes the biopsy can be falsely negative, especially if damage is only sporadic and Dr. only took a few samples.

Read Dangerous Grains for some more insight...

[jerseyangel]

Really, don't go back to that GI. I've said it before, but I have to say that I think a lot of these doctors are trying not to diagnose Celiac. There just does not seem to be any other explaination for it. You have had a positive result, and strong family history--not to mention your symptoms. My symptoms took a jump after I had my second child, also. That is a common trigger. Even my GI told me that. My advice--go totally gluten-free yourself. Start feeling better now, and have the energy for your kids and yourself. You really don't need a doctor's permission to eat this way and it is a healthy way of life. Keep a close eye on those kids, too for any suspicious symptoms. I don't know how their doctor can tell they won't get it by looking at them.

[Guest Robbin]

Your story has completely left me stunned. This is completely insane. I think he is so arrogant that he would let you live a life of illness and misery, possible death --not to mention your children--just because he won't admit he missed it, or he was wrong, or the fact that you suggested it--ABSOLUTELY UNBELIEVABLE. I wish you could just wash your hands of the two of them and go to someone sensible that actually CARES. I am so angry on your behalf, I am beside myself.

If the diet helps you, as nini said, then you have celiac. Try to find a dr. to help you, or take matters into your own hands and get the tests from enterolab. Call your ins. to see if they will cover it before you do, and go from there. I had to do that since my dr. was so ignorant of the illness. Good luck to you and your family and keep us posted.

Oh, and as for that "dr." Remember "what goes around comes around, mister." He will someday get paybacks. The longer I live, the more that is true. (Sorry -I am in one of those moods tonight!)

[moonunit]

Thanks, guys. You make me feel better.

I'm going to talk to my primary care next week (she has a very heavy Chinese accent so I am assuming, perhaps incorrectly, that she was trained outside the U.S. and maybe that's why she took me so seriously). I'll bring all my stuff that I've printed out from the web, nice valid sources like Columbia U and the Mayo Clinic, as well as my book "Celiac Disease: A Hidden Epidemic" and talk to her frankly about my concerns re myself and the children.

The suggestion that I get her to endorse a positive diagnosis if the diet works is a great one! I will definitely try that, and show her that the blood work she ordered, if I'm not mistaken, was only 1/4 of the panel currently recommended. She might just order the full panel, which would help things if that's the only positive indication I've had so far. Meanwhile, I'll stay on a normal diet until I talk to her. If I can put up with the big D for 13 years, I can do it for another week or two.

It is of course possible that Dr. Arrogant-pants is right, and I don't have celiac disease. Even if that's the case, though, I'm definitely switching gastros. He's a class-A jerk with a God complex regardless of whether he diagnosed me correctly, and I don't need that in my life! Like many of the people on this board, I have had lifelong issues with being called a drama queen and a hypochondriac, so now that I'm in charge, he can stick his attitude where the sun don't shine. Being a gastro, as well as an a-hole, he should be intimately familiar with the region.

Thanks again. Y'all rock.

[Guest Robbin]

:lol Love the attitude now, you go girl!!!!

[Guest nini]

I had a really long post and then lost it... grrrrrr...

bottom line, even though you had an incomplete panel, you still had a positive result, which is still indicitive of Celiac. The problem with an incomplete panel is that a lot of Celiacs get a false negative that way, but that can happen even with the complete panel, just not as often.

My daughter was dx'ed based on genetic factor(me) and positive dietary response only, after the idiot GI said she "JUST" had IBS (at three???) Anyway, her pediatrician backed me up on the dx, but also said "we KNOW it's Celiac, but I'm going to put Gluten Intolerant in her permanent record so that she doesn't run into problems with Insurance companies on down the road", like being denied coverage... yes it can happen, and it happened to me after my employeer terminated our insurance benefits and I had to try to get ins. coverage on my own. With a positive dx of Celiac on my chart, I was literally determined "UNINSURABLE" which is ridiculous because I'm healthier on the gluten-free diet with the Celiac dx than I was before... idiots.

[penguin]

Why is it that gastroenterologists are all part of the MEDICAL DIETY club?

Pisses me off.

My internist (my normal doc) is the one who diagnosed me. She said that going to a gastro was unnecessary, given my funky bloodwork and dietary response. Think about it- your PCP is the one who sees you the most often, sickness and health, and knows your history on a day-to-day basis. It seems to me, in my experience, that internal medicine docs tend to keep more "up" on things than specialists. They're good at seeing the whole picture. My doc also encouraged me to research stuff online, and that I would find more that way than through a nutritionist.

I won't even go into my experience with a gastroenterologist.

Sounds like your PCP has her act together, and her word is just as valid as the numbnut that played a cheap "you're dumber than me" card.

Stick with your doctor, and it's not like you produce antibodies for no reason, and borderline is still positive.