Frustrated Experience

[CanadaMike]

I'm 28 yrs old, and trying to find an answer to what the hell is wrong with me. After finally learning about celiac disease I was 90% convinced that was the problem. I have a very long list of symptoms and many of which point to celiac disease. I asked my doctor for a biopsy on my small intestine, but he declined saying my blood work didn't indicate any problems. I've had a history of anemia since I was born, yet this time my iron levels were actually too high. I'm wondering if I should be researching other possibilities, or could the blood work simply be unreliable?

Here's my results:

Serum Iron: 32.2 umol/L

Ferritin: 135 ug/L

Transferrin: 50.2% sat

TIBC: 64.1 umol/L

Fasting blood sugar: 5.5 mmol/L

Transglutaminase lgA: 2 RU/ml

Gliadin lgA: not performed because of negative tissue transglutaminase lgA

Endomysial AB lgA: no result (just says ORDERED)

Platelet count: 242 giga/L

White blood cell count: 6.3 giga/L

Hemoglobin: 168 g/L

The iron was high so it was re-taken, and found the following results:

Serum Iron: 21.0 umol/L

Ferritin: 131 ug/L

Transferrin: 33.2% sat

TIBC: 63.2 umol/L

I'm wondering if he's right and I'm looking in the wrong direction, or if I should be seeking another doctor. I have a wide range of symptoms including:

* constipation/diahhrea

* large painful stools constantly, movement once a week at most

* foul smelling stools

* weight gain (large appetite)

* lethargic/fatigue (even with 12 hours sleep)

* poor enamel (despite good hygene)

* severe insomnia

* depression

* light sensitive eyes

* itchy skin

* bad breath (dehydration?)

* people tell me I always look pale, tired and emotionless (despite sleeping lots)

To me, that sounds like celiac disease. I've been fighting *something* since I was born, and no one has been able to tell me there's anything wrong, when I know something is wrong. I tried going gluten free for a week (I decided to go back in case of a biopsy) and as soon as I started eating bread again my skin became intensly itchy for about a day or two. I also recently found out I have a close blood-relative (my aunt) known to have celiac disease.

Suggestions / HELP??!!

-Mike

[Felidae]

My blood work was negative for celiac disease. I also have a family member with celiac. It is possible that you have celiac or that you have nonceliac gluten intolerance. If you don't need a diagnosis, you can always take all gluten out of your diet and see what happens.

My dietary response was positive. I have never felt better in my whole life. You could try the diet for at least one month and see if you have any changes. Or you could try and find another doctor who will refer you to a GI for the endoscopy.

[CanadaMike]

The only reason I would like a solid diagnosis is to rule out other more serious possibilities (such as cancer), and to have my child (who has ADHD symptoms) tested as well. I'm sure even my parents should be tested as well, it would be nice to give them all a real reason to get tested.

I forgot to mention, I seem to have respiratory problems (I get winded walking up stairs) and I had to quit a few years back when I was an amateur kickboxer due to asthma-like problems. I don't have asthma, and I used to do 60 min of cardio 3-5 days a week with almost no improvement. Again I thought this may have been related to celiac disease, or more specifically anemia and poor oxygen absorption. No, I don't smoke or drink.

[Rusla]

My blood work was negative but then I was gluten-free when they took it which of course it would show negative. Many times you get a false negative with blood work.

[Felidae]

The only reason I would like a solid diagnosis is to rule out other more serious possibilities (such as cancer), and to have my child (who has ADHD symptoms) tested as well. I'm sure even my parents should be tested as well, it would be nice to give them all a real reason to get tested.

I forgot to mention, I seem to have respiratory problems (I get winded walking up stairs) and I had to quit a few years back when I was an amateur kickboxer due to asthma-like problems. I don't have asthma, and I used to do 60 min of cardio 3-5 days a week with almost no improvement. Again I thought this may have been related to celiac disease, or more specifically anemia and poor oxygen absorption. No, I don't smoke or drink.

Good reasons to get tested. I guess your best bet is to try and find a new doctor who will refer you.

After I went gluten-free my endurance was completely different. Any ascent I did before whether it be riding, hiking or cross-country skiing, was very difficult and I was huffing and puffing. Since being gluten-free, I can hold a conversation on the steepest hills ever. It truly is a great feeling and something I did not expect from going gluten-free.