Wrong Diagnosis?

[RobinAnn]

I'm a newbie and am hoping for some input. I've been fairly sick for many years first starting with a Dx of thyroid disease in 2003 and last year I was hospitalized 4 times. First for my pancreas and then later to find out why I have constant loose stools (6 years) and bright red bleeding (1 year). I'm also lactose intolerant.

In the end I was dx'd with crohns of the large intestines only. However, I'm not convinced they got it right. I don't really feel my symptoms are in line with this Dx. They did many looks inside - both up me and down me...thank goodness for drugs that knock you out!!!

I have all of my test results but they are written in German - (I am an American living in Germany) so I cannot read in great detail this info. I know they did a gastroscopie and checked for sprue plus other things, results 'unremarkable duodenal mucosa'. Does this mean no celiac disease?

I have been doing wheat and/or gluten free off and on for about 1 year (wheat and spelt are usually my weaknesses but other forms of gluten, including their derivatives are eaten in very small amounts if at all). Each time I am hospitalized i am usually given wheat, spelt or rye. Usually in the hospital I have uncontrolled crying - something that I seldom have at home where I am usually wheat/gluten free. With the latest hospital stay I had the usual crying plus I lost most of my hair - I think the hospitals do more harm then good. Anyway I decided to try the SCD diet for my crohns - finally this got my bleeding to stop. I did however, increase my intake of legal, lactose free cheese from cow (I mention this because I know eating gluten-free often goes hand in hand with eating CF). As I said the bleeding stopped and my diarrhea was less severe but my stools remained very loose. With time I started feeling worse on this diet and really started craving starches/grains. Like a fool I ate 2 wheat flour tortillias. At first I had mild stomach bloating but in the middle of the night, about 15 hours after eating the wheat, I had severe cramping, explosive diarrhea and the bleeding was back. The bleeding did stop by the next day.

Is it possible I have celiac disease. Could this be an allergy/intolerance to wheat instead and is that actually different.

If it is celiac disease, how long does it usually take after going Gluten-free Casein-free to see results?

[ravenwoodglass]

Well we know you don't have IBS, that does not wake someone up at night like that. So told to me by my clueless GI while he was begging for forgiveness for misdiagnosising me for years.

I would get onto the diet and stay on it if I were you. It sounds like eliminating gluten helped a lot and adding it back in caused a severe reaction. Your body is trying to tell you how to help it. Sometimes we have to take our health in our own hands when the doctors let us down.

I suppose I should note that the overwhelming depression you speak of is one of the first symptoms for me that I have been glutened. Followed by the same explosive, painful D and then I also bleed for up to 3 days afterwards. Your not alone in that response.

I don't know if you can do Enterolab from where you are but if you can they can check for antibodies in the stool. They don't diagnose celiac but they can tell you if you are forming antibodies. If you don't think you can stick with the diet without some sort of medical proof they might be something you could look into.

[RobinAnn]

Well right now I'm day 1 Gluten-free Casein-free. I ate rice and this made me bloated but not the running to the toilet with explosions and blood. Could this be my body struggles to digest rice only because my intestines are so raw. In other words will I have milder reactions to other foods until I've been Gluten-free Casein-free for a while? How long until I can say with confidence that it is in fact gluten and casein without wondering if its other foods as well or too much fiber or too much sugar or too much this etc...? Basically how long should I give Gluten-free Casein-free a try before deciding its working or not. I'm certain wheat is a problem but that isn't the same as Gluten-free Casein-free or celiac diseas.

I have plenty of other symptoms aside from hair loss and crying spells: intolerant to thyroid meds and other meds, mood swings, depression, premature menopause, irrational thoughts, explosive rage, I look older than I am, dry skin, although not all of these symptoms appear all of the time - they rotate. The weird thing - I had occasional loose stools for about 7 years but in 2003 when I was first given thyroid meds the loose stools went instantly from occasionally to every day and multiple times, one of the reasons crohn's doesn't make sense to me although maybe celiac doesn't either. Also, I haven't worked for 7 years. Shortly after starting thyroid meds I got sooooooo much sicker that I couldn't work...and I really loved my job!!! Eventually because of the thyroid meds I had to be rushed to the hospital but they were clueless.

I'm not certain that a confirmed dx is so necessary but could they have missed it considering they took a look inside and did a biopsy?

One final note that might have meaning. I took about 40mg zinc last night (I'm also looking into pyroluria/HPU). Every morning without fail I have 2 - 3 lose stools in the AM. So far today, early PM, nothing. Is there a strong zinc celiac connection?