I have through internet come to the c... - Gluten Free Guerr...

Gluten Free Guerrillas

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I have through internet come to the concluson just this morning that I have celiac disease


I am from Sweden lived in Philippines in 25 years on a remote island Polillo.

I have had trouble with diarrhea for 4 years at least and it has become worse these 2 last years and also have I losing weight a lot.

I have been hesitant going to a doctor here for my problems because of the cost. I have no health insurance but I am also skeptic about their knowledge. I think it is just as well I did not go as the symptoms are so vague and beside doctors here are simply not familiar with this desease. (maybe because it is common in Caucasians than people here.)

Through the internet I had some possible diagnosis

Pancreatit, bile acid malabsorption, ulcerus colit and colon cancer.Irratable bowel movement and that was about it. I had ruled out parasites as albenazole (?) would have taken care of them.

Some simple tests like blood in feces would rule some suggestions out. So I planned a basic bloodtest first.

Celiac which seemed to fit also but I ruled out because of my misconception that celiac started when younger age groups.

Then everything changed when I read that it was common among people in my age group. In fact that seems the most common age group when it starts.

Then there was news that more than 1 percent of the Caucasian population had it. Gluten intolerance or celiac desease.

It seemed more and more clear that this was it. I had a lot of symptoms seemingly also related, mouth sores irritability depression oxalate kidney stone etc

I just have to avoid wheat and barley. Rye is almost nonexistent here.

That is the simple solution. In internet they write about endoscopy ad biopsy. Good heavens. Also about some unclear bloodtests.

The solution is simply avoid wheat and barley. Of course this is not so simple as luncheon meat hot dog knorr cubes contain it I soon realized. But still it is the only way. If I feel much better after a few weeks or months the whole thing is clear.

What puzzles me now is why did I not notice in some intuitive way that wheat was bad for me.

Usually the body feels when something is unhealthy and there should have been some correlation with my wheat intake and the diarrhea.

The explanation is of course that I ate daily bread so I never had a clear period when I felt better.

But still it surprises me that I did not have some kind of negative feeling towards bread. In fact I may have but I brushed it away. Strangely I had a definite negative feeling against oatmeal. I even vomited after eating it. And it seems oatmeal is not strictly forbidden.

Also I noted that beer had a negative effect on me in the sense that it seemed yhat my prostate seemed to swell up after drinking it so avoided beer.

Hopefully my villis are repairable.

My basic bloodtest showed low hb but no blood in feces which also confirms my suspicion.


8 Replies

My advice to you is that 'Dr Google' is never as reliable as a proper medical Dr. Whilst it may point you in the right direction you need to see a Dr to get a formal diagnosis.

You need to see a doctor for your diagnosis and to get some usual advice about diet, a specialist nutritionist as there is a lot more to it than avoiding wheat and barley. Only gf oatmeal (normal oats are highly likely to be cross contaminated when grown or milled) are not strictly forbidden and many people have a reaction to these as their protein, avenin, is very similar in structure to the gluten protein molecule.

Sorry sentence was auto corrected but essentially you can't diagnose using Internet you need to see a doctor and if you are coeliac you need to see a nutritionist about diet as it is more than avoiding wheat and barley!

Hi didriksoderberg, it's clear from what you're saying that going to a medical specialist is not really an option for you, so while it may be ideal to say "see a doctor" the truth is that what you are doing for yourself by avoiding and identifying the triggers is the best you can do on your own.

If and when you can afford a doctor, then yes I agree with the respondents above but if you have a varied and healthy diet without wheat (and you sound switched on enough that you are capable of working that out without an expensive nutritionist) and you have recovered from the obvious symptoms, that's as good as you can do for now.

And your doctor has ruled out your worse suspicions, so what more is there to add except... good luck!

thanks for your encouragement

As I see it all the above comments are completely off mark and based on some almost religious belief in doctors and the medical system.

In fact after now only 3 days avoiding wheat oats and beer (and I realize through internet that it includes surprises like most soy sauce candies and knorr cubes. I don’t need a nutritionist for that.) I have now for the first time in 4 years have had normal bowel movements and not this waterish fatty stools I had before. That is enough for me . Why on earth go through endoscopy and biopsies.

No the doctors and the medical companies are in it together to squeeze all they can from patients even if it is not strictly necessary often

Lexy in reply to didriksoderberg

Hejsan Didrik! If you are feeling markedly better avoiding wheat, oats and beer then surely - as long as you maintain a healthy diet with fruit, vegetables and roughage - there should be no problem? Only you will know in the long run if the changes you have made are the right ones.

One thing I found was that after initially cutting out wheat, barley, rye and oats and their derivatives...I also had to cut out coffee (sob sob sob), and I seem to react to green tea, and there are many food items sold as 'gluten free' or with 'no gluten containing ingredients' which still cause me to react. So it's an ongoing process. I have also started taking lots of extra vitamins and minerals (vit C, B, D, zinc, iron...) - so you may wish to consider some of these.

It could be that some of the answers you got above are to do with living here in the UK...some people are financially dependent on getting an official diagnosis as it gives them access to certain food items on prescription. And perhaps for some it's a source of comfort to have an 'officially diagnosed medical condition' - it can make it easier when telling family, friends and work colleagues. Also some people may be reacting because it can be easy over here to just swap your gluten diet for really unhealthy 'gluten-free products' which are full of sugar and fat and lots of other unhealthy ingredients...Of course for some they may find that the initial relief that eating gluten-free was giving them eventually goes away and reveals another medical problem. Some of the answers above may have come from people who have various other medical problems (either as a result of gluten, or which are worsened by eating gluten).

I think if you have common sense, eat a healthy and varied gluten free diet and take regular exercise, and if you are feeling healthy on a gluten free diet then it probably is the right thing for you. Take care and I hope you continue to feel well! :)

In Australia oats are a definite no-no. Be careful of self diagnosis as you can be way off. My symptoms were indicating MS.They were the less common symptoms for Coeliacs, Even my GP didn't see coeliacs coming.You will definitely need help with your knowledge of the foods available as gluten is hidden in so many products. Look after your self :)

all oats I have bought here are from Australia and as I mentioned I felt clearly that the body could not accept the oatmeal

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