Sick Of Doctors (Pun Intended)

[lavorama]

This being my first post: hello everybody.

A bit of "clinical history" from this 35 yo male:

My body never agreed very well with food: I've always had a slow digestion, I would usually lose my appetite and start feeling a bit nauseous halfway through any meal, I could never eat breakfast because I always felt nauseated when I woke up, and I never, ever - to most people's envy - could gain any real weight (even once when I really needed to in order to get a job).

Came 2003 and these vague complaints became acute. I began going through episodes which typically lasted 3-4 hours when I would feel this intense and overwhelming nausea (10x worse than a bad case of food poisoning) with sudden urges to defecate without ever... defecating (I would feel even worse when I sat down on the toilet). After the acute period ended, I would remain during days or weeks with a permanent but light nausea, constipation alternating with diarrhea and loss of appetite. I went to see two general practitioners after two episodes, and all I got was a prescription for tea and some advice to avoid the stressful aspects of life.

After some months I got better and went back to my old self, still not agreeing very well with food, but without any further acute episode.

Last year, around June or July, the episodes returned - with a vengeance. The first one kept me awake all night until I finally managed to succumb to a light sleep around 7 am (I had gone to bed at 23ish). Two weeks followed not being able to eat properly without getting nauseous, but with two added symptoms: vertigo and difficulty swallowing. At the end of those two weeks, when I was working a night shift, I got so sick, the nausea was so intense, I almost fainted and even thought I would die. This time I was taken to the emergency room.

At the hospital, the doctor said he couldn't find what was wrong with me, so, after some more advice about stress, she made me an appointment to see a specialist. This specialist listened to my complaints and decided to put me through every blood, urine and stool tests in the book. Results:

- Lactose intolerance (a result above 30 would be negative, between 20 and 30 inconclusive, below 20 positive: I got 0).

- anti-gliadin IgG: 2, IgA: 4 (anything below 10 would be a negative result).

- anti - transglutaminase: 6.2 (anything above 4 would be considered positive).

So the same doctor put me through a colonoscopy and an endoscopy. The results:

Colonoscopy: No visible lesions or alterations visible on the mucosa; upon biopsy analysis, the ileum mucosa was found having reactive lymph hyperplasia (I'm portuguese, so this is most probably a horrible translation), and both colon fragments revealed a slight and non specific chronic inflammation.

Endoscopy: No visible lesions. Biopsy showed mucosa with "preserved general architecture", but with slight infiltrate, predominantly lymphocytic with some eosinophils.

The doctor called these results "inconclusive" and asked me I how I felt. I told her I had started a gluten free diet after going through the endoscopy (some 3 months had passed) and that I felt much better, had had no more acute episodes, no more difficulty swallowing, no more vertigo, no more joint pains (which I thought were normal and age/exercise related before), no more mouth sores, no more anal itching, and no more digestion problems than a regular person (the very occasional diarrhea, constipation or bloating whenever I overate or ate something bad). The only time I really felt bad was when I lapsed and ate gluten (there was a nasty encounter with imitation crab meat). After hearing this, the doctor told me to try and eat gluten again during a week. I did so three times with a day's interval the following week in each of those instances I had a typical bad reaction. When I went back to the doctor's office and told her this, she told me I probably was a celiac, but deferred me to a colleague of hers who would put me through a genetic test.

I went to see this doctor today. After she took a brief look at the tests results, and although she did prescribed the genetic test, she told me she couldn't diagnose me as a celiac and pretty much ridiculed my symptoms and said it was probably dyspepsia or IBS. She also told me that she would still not believe me to be a celiac even if the genetic test would come back positive, and I would have to go through all the former testing. And if the genetic test came back negative, than I'm truly an idiot. Oh, and she also told me to drink lots of milk even though I have lactose intolerance because no one ever dies of drinking milk...

So what do you think? Am I and idiot, a celiac or something in between?

[chasbari]

The doctor is the idiot. You at least have intolerance to lactose and glutens. Your positive response to a gluten free diet should be enough confirmation for you. Those D*mn doctors and their whole "avoid stress, it must be in your head, probably IBS" mentality are the ones who are truly living in the dark ages. You know what is best for you.. trust your gut instinct.. you have made it this far in spite of them. You are no idiot.. you figured out what the doctor could not. Live healthy.

[Simona19]

I do feel the same way as you. My biopsy showed the beginning of the celiac disease, but the blood work came back negative. I'm now two months on gluten free diet and month on milk and fat free diet. I also have many food alergies: nuts, kiwi, banana, honey, black pepper, pepermint, pineapple, cantelope. Gastroenterologist told me to stop eating fat, chocolate, onion, citrus fruit, tomato and fruit juices, coffee, coke, garlic (because of my acid reflux disease), beans, cabage, tomatoes, brocoli, califlower(to stop pain and bloating). I also should eat these things only with the moderation : apples, bread, pasta, peach, plums,corn, potatoes and pears.

I saw two gastroenterologists, two regular doctors, one allergologist. One will say don't eat gluten, it is very bad for you, and another will say there is nothing wrong and you should eat gluten. They also look at me like I'm the crazy person who is locking just for the attention.

Many people in this forum told me that I'm on the right truck, and that I know have I feel. If I haven't experienced diarrhea for the past two months, I must be doing something right. I think.

About the milk. I saw the allergologist, and she did the test for milk and wheat intolerance. I had very bad reaction for the milk and for the wheat only after 45 minutes, but it lasted for more than 24 hours. The allergologist told me to avoid milk and casein and all milk products. I can't even drink the lactaid milk, or use the lactaid pils. After I ate something with milk I had the D right a way. I alway tought myself that I will loose more weight when I will use the bathroom more often. And I was wrong. My body was constantly inflamed, dehydrated and in pain that I'm actualy overweigt. I also found out that I'm on the border line to have Hypothyroidism which many people here blames the gluten for it.

It is hard for me too. I can see the disbelieve in the doctors eyes, and I'm also questioning myself and my results. The one and very important thing is that I found this forum. I'm not alone in this world,and many of us had the same feelings.

[Tina B]

This being my first post: hello everybody.

So what do you think? Am I and idiot, a celiac or something in between?

I think you know not eating gluten makes your symptoms go away so you have your answer. What more do you need?

[jackay]

Those D*mn doctors and their whole "avoid stress, it must be in your head, probably IBS" mentality are the ones who are truly living in the dark ages. You know what is best for you.. trust your gut instinct.. you have made it this far in spite of them. You are no idiot.. you figured out what the doctor could not. Live healthy.

I agree with your doctor that you should avoid stress. In your case, your stress is both gluten and lactose and any other food or chemical you are intolerant to.

My anxiety went through the roof and doctors were telling me it was all caused my stress when I had very little stress in my life. Then mental health professionals tried to blame it on my childhood. (My parents divorced when I was five but I was always a happy, carefree child.) My anxiety was caused by gluten. Gluten is my stress.

Once I went on a gluten free diet, the anxiety disappeared. It had nothing to do with what the medical profession define as "stress".

The doctor I now see (osteopath) feels that 90% of our health is related to our stomach. I agree with him whole heartedly. He is the only medical professional who has worked with me to get to the root cause of my health issues and not treat the symptoms. Luckily, treating the symptoms didn't help or I'd be masking my gluten intolerance and still destroying my body and mind.

Would have been nice if I hadn't had to go through five years of hell to get my health restored. That is behind me now and I am living for now and looking forward and not dwelling on the past. It would be nice to not have spent the thousands of dollars on medical bills and loss of five years wages but my current health is way more important than that. Money doesn't buy health!

It is definitely time doctors get enlightened.

[lavorama]

I think you know not eating gluten makes your symptoms go away so you have your answer. What more do you need?

I need a formal diagnosis because:

- I'm not crazy. I'm rational enough to believe in the power of the mind and the suggestive effect a blood test positive for celiac desiase can have (although I don't think the mind would take away all the crap I felt when I wasn't gluten free).

- No diagnosis and, worse still, a doctor saying "you are not celiac" also has a powerful effect upon minds: the minds of the people around you who don't understand why you can't eat out or get near half the stuff in the food pyramid.

- I would enjoy the fiscal benefits given to those diagnosed with celiac disease, since gluten free brands are really very expensive in Portugal.

- I would also like to join the Portuguese Celiac Association, so I could get specialized help with issues like the one I'm posting about...

Speaking of which, I just read that the "Marsh criteria" states that the first two stages of pathological changes in the small bowel typical of celiac disease consist of the mucosal infiltration I spoke about in the first post. Any imput on this?

[Skylark]

Welcome. I think you're a celiac and not an idiot! The second doctor who said dyspepsia or IBS is the idiot. Celiac can be an underlying cause of both.

There are two things that can cause anti-TTG and your sort of biopsy. Early stages of celiac disease, and the inflammatory bowel diseases like microscopic colitis. If you're responding well to the gluten-free diet, it's probably celiac, and it sounds like you've tested well enough to confirm that you have a strong and clear reaction to gluten. Celiac disease is progressive, so you may be lucky enough to have caught it at an early stage and that's why you're getting inconclusive test results.

Besides, you say you're feeling much better on the diet. Trust your body! You know it better than the doctors do.