[boysmom]

He started with the 'so what's going on' question, so I told him about my trip to the ER and diagnosis of esophageal spasms. He seemed totally unconvinced that was what was happening, but didn't offer any other explanation for what happened. I also tried to tell him about trying a gluten-free diet and how that seemed to make more difference than the meds did in how I'd been feeling, but his immediate response was that 'celiac enteropathy causes people to lose weight and be malnourished' due to the damage to their intestines, so since I was obviously not thin I couldn't have that. I tried to explain how I was unable to lose weight before the diet change, but was losing now despite eating about 200 extra calories a day because of the substitutions for the diet, but he started talking about how removing bread from the diet can cause weight loss because bread is so full of starches etc...

I should add here that he told me if I just lost weight my indigestion would clear up, because being overweight means when I lay down it presses into my stomach which causes the reflux (that he just said he wasn't convinced I had). I told him I have tried for years to lose weight, even did Weight Watchers for 15 weeks at one point and lost a whopping 5 pounds. No amount of diet and excercise seems to have made any difference. I am 5'4" and have weighed in the neighborhood of 224 +/- for 10 years. I've been logging my food on sparkpeople for several weeks now and was averaging about 1300-1400 calories before changing my diet. Since eating gluten-free it had risen to around 1500 calories, and yet I've lost 10 lbs since the first of June. The last week I've eaten less, about 1100 calories, just not feeling as well and may have been accidentally exposed to gluten or something else that I'm sensitive to, and my weight has leveled back out again. I don't have a problem admitting I'm overweight, what I have a problem with is a doctor who tells me that 'it's all a matter of supply and demand... if you just eat less and exercise more... ' If I eat any less I won't have the strength to get off the couch.

At the end of our visit he was only willing to schedule a scope of my esophagus and pin a ph monitor in to see whether I was actually having reflux or not. I decided to go along in hopes that as he eliminates other options, maybe eventually he'll be willing to listen finally. However the day before the procedure was scheduled his office called to tell me that my insurance won't cover the hospital that he works in.

So now I'm back to square one... I have to find a doctor at a hospital that my insurance will cover, start all over explaining to him/her, and now I don't even know where to start to describe what is going on. As this has gone one I've added more and more symptoms to my list of what is happening, and now that I've had a couple of 'attacks' while I was actually fully awake it has become apparent that they are not starting in my esophagus, it starts lower down (stomach? gut? just below my ribs) and as that starts with the twisting and contracting it feels like it pulls on my esophagus and puts pressure on my bowels and bladder. I end up in the bathroom repeatedly over a couple of hours until it all settles down again.

I have written down a detailed log of the progression I've seen, now that I can see a pattern emerging, and I'm thinking about writing down all the things I can see in my history that *could* add up to celiac. Has it been your experience that a doctor will take the time to actually read or even skim something like that? I find that when I start trying to explain and they shoot down my first couple of 'reasons' I give up because I feel like they're not really listening but just shooting down my ideas/explanations. Do you think I should write all of this out or am I just wasting my time?

a very frustrated Luanne

BTW, the good news is that these spasms/attacks/ whatever they are are down to once a week now, the bad news is that I seem to have them for 2 or 3 nights in a row, so I'm not sure it's really progress.

[ravenwoodglass]

I am sorry you had such an awful experience with this doctor. Unfortunately experiences like yours are all to common. If a doctor derived diagnosis is essential for you then do look for another doctor. You do also have the choice of simply going gluten free, sometimes the resolution of issues can be enough for our GPs or Internists to at least recognize that that gluten is an issue. You don't need a doctors permission to be gluten free.

[lizard00]

I had a pretty similar experience, too, with my first GI doc. I had pretty much given up and I had already figured that gluten was the issue and as ravenwoodglass said, I didn't need a doc's permission to continue. But I was having some lingering fatigue, and my GP said I really needed to see a GI to rule out any futher food intolerances/allergies, etc. She referred me to a different doc and it was totally worth going. I'm not sure if it made a difference that my GP's office called to set up the appointment, so, I had a little more validation to my claim, or maybe he's just that kind of doc... I don't know. But he seems really up on the latest info, and has been very helpful, and he LISTENED!

So, if you are able to have a doc recommend a different GI, or even send to you, that might be helpful. Either way, sounds like you are better off without dealing with him. There are good docs out there, they just are not always easy to find. I hope you find one.

[boysmom]

I have been eating gluten-free, or as close as I know how, since the beginning of June and have no intention of adding it back into my diet unless/until sensitivity has been totally ruled out of what is going on for me. I am following through with a doctor for a few reasons:

1. These spasms are still going on, so I don't know whether it's just still a part of the healing process or if there's something else going on (ulcer or colon damage) or some other sensitivity still affecting me.

2. If it is celiac disease I can trace a path of at least 18 years of symptoms, if not my whole life and I'm concerned about what damage has been done that I may need to know about sooner rather than later. I am 47 years old and my grandfather died of colon cancer, so I want to be aware of any polyps or early stage cancer asap.

3. If I have celiac disease, I suspect at least some of my sons may as well. Because they range in age from 7-17 I still have them under my control and care for a while longer and would rather they at least have a chance to know earlier in their lives to help prevent future complications for them.

I am working with my husband now to come up with enough money to do the genetic testing on me. I figure if I don't have the genes we can set this aside and focus on looking another direction for explanations, but if I do have the genes maybe it will make the doctors pay more attention to what I'm trying to tell them.

[ravenwoodglass]

boysmom, on Jul 21 2009, 06:32 AM, said:

I am working with my husband now to come up with enough money to do the genetic testing on me. I figure if I don't have the genes we can set this aside and focus on looking another direction for explanations, but if I do have the genes maybe it will make the doctors pay more attention to what I'm trying to tell them.

Please do not take the gene testing to be an absolute yes or no to whether you have celiac or not. Most places only test for 2 out of the at least 7 known celiac related genes. Genes are not an absolute although they can be helpful in the diagnostic process.
Also if you are going to persue fruther blood or biopsy testing you need to keep eating a full gluten diet, if you have been gluten free or gluten light it can give a false negative on the tests.

[pchick]

boysmom, on Jul 20 2009, 09:18 PM, said:

I should add here that he told me if I just lost weight my indigestion would clear up, because being overweight means when I lay down it presses into my stomach which causes the reflux (that he just said he wasn't convinced I had).

I had the same problem! Every western doctor I went to told me to lose weight and/or go on antidepressants, that I was overweight and therefore the pain I feel couldn't really be real.
Where was it written that overweight people are hypochondriacs?? Why can't they just do the tests instead of making you feel like it's all your fault.
I'm 40 now, always been overweight and just now (3 weeks ago) I was diagnosed... after YEARS of being told to go on diets (which I did and gained weight on) and exercise (which I do more than my skinny friends).
Since cutting the gluten a few weeks ago I've lost 7 pounds! and I feel SO MUCH BETTER! I even feel like getting out of bed in the mornings now so happy!

Good luck with everything!!

[GFinDC]

Hi Luanne,

The genetic testing is not going to prove you have celiac. They have various estimates, but it seems around 30% of the U.S.A. population has the genes for celiac. But only 1% develop the active disease. Another option might be Enterolabs testing. Enterolabs can't prove celiac either, but can show if you have gliaden antibodies in your gut.

[boysmom]

GFinDC, on Jul 21 2009, 10:00 PM, said:

Hi Luanne,

The genetic testing is not going to prove you have celiac. They have various estimates, but it seems around 30% of the U.S.A. population has the genes for celiac. But only 1% develop the active disease. Another option might be Enterolabs testing. Enterolabs can't prove celiac either, but can show if you have gliaden antibodies in your gut.

I realize that having the genes doesn't necessarily mean I have the disease. I'm hoping that showing that I have the genes, combined with my symptoms and response to a gluten-free diet, will convince a doctor to take my symptoms seriously and at least consider the possibility. What frustrated me most was that it seemed like he took the facts that I was nervous about whether he would take me seriously (he's not the first doc that took one look and made incorrect assumptions about my dietary habits) and that I am overweight and assumed then that I'm just a head case. My symptoms are NOT in my head, not caused by stress, and not a ploy for attention and I just want them to realize that so we can get down to the business of figuring out what it *is*. I'd be thrilled if it turns out that I am able to eat gluten again... that somehow whatever is going on in my gut is making me temporarily senstive... but whatever is going on, I want to know what it is so we can get the problem resolved and not just mask symptoms and hope that's enough.