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Member Since 07 May 2012
Offline Last Active Private

Topics I've Started

Getting Confused/scared About Future

11 May 2012 - 01:04 AM

I'm getting confused, even scared when reading the posts in this forum. So many people seem to get all sorts of symptoms after going gluten free. Is that to be my future too? I'm feeling great now, how long will that last?

As my experience and approach are very different to that of most, I'm sharing it here in a rather long story, with the big questions at the end.

If I understand celiac correctly, it destroys the villi in the small intestine, making it not functioning anymore. So the food will go undigested into the colon for the bacteria and parasites to feast on. I assume that it is their overgrowth causing the bloating, flatulence and foul smelling mushy stools.

I lived in Thailand for 4 years, were I only had very mild occasional symptoms. My diet was mainly standard Thai food with maybe one loaf of bread per month and a very rare visit to a junk food establishment. Within 3 months after returning, all hell broke loose. Went to the doctor. The blood and stool analysis showed nothing specific, so I was left un-medicated and referred to a specialist at an Academic Hospital. Insane, a waiting time of 4 months!

Now it made sense to me that the non-Thai food was causing my problems, so the first thing I did was to go on a strict Thai diet. My symptoms decreased by about 80%. Yet the remaining 20% were still a lot of discomfort.

The way it felt to me was that fermentation processes were going on inside my belly. Googling came up with the controversial Candida overgrowth and the SCDiet. I started on that, however, being dairy intolerant, got rather tired of the continuous promotion of cheese, yoghurt and pro-biotics. In my opinion people in Asia don't use dairy and seem to be OK on that, so a healthy life without dairy should be possible too. Anyway, SCDiet without dairy led me to the Paleo diet and I ended up on that.

By the time I finally got to see the specialist, after 4 months of non-starch, nonsugar, non-alcohol dieting, all my symptoms had disappeared. It was then that I learned that my previous stool analysis was wrongly interpreted. It was clear that I was infested with the parasite Blastocystis Hominis. As the symptoms were gone by then, it seemed that the diet had worked. A new analysis was ordered to check that and indeed, the parasite was gone.

Now for the specialist, my dairy intolerance, previous diagnosed vile acid diarrhea (1980's) and B12 mal-absorption were indications to suspect celiac. Or it was that I clearly indicated that I suspected my small intestine not to function properly and asked him to find the cause. Anyway, a biopsy was scheduled.

As I was already 4 months on Paleo, I was also 4 months gluten free. So, before having the scope, I had to go on a gluten challenge: 2 months of 30g gluten/day. Terrified of having the parasites resurrect again, I opted for gluten‑powder, a way to gluten myself without a lot of parasites feeding starch (only 10g/day). Absolutely disgusting stuff, no matter what I mixed it with, the terrible smell of it made me nauseous. After one month I had to reduce the amount, as I was not able to keep it inside anymore.

The scope was done and the biopsies taken. Without awaiting the results, I went on gluten free the next day. Two weeks later, when I was on a one month holiday in Thailand to recover from my ordeals, I got the result by phone and it was positive for celiac. Maybe it sounds strange, but to me it was really good news. After a lifetime of discomfort and misdiagnoses, I finally knew the cause and the cure! Unfortunately nobody I know shared my joy.

Contrary to most people, I'm not replacing products in the standard Western diet by the special gluten free variations, I just got fully rid of the Westernized eating habits. I stick to Thai food only, which by origin is gluten and dairy free. Only eliminated the bami noodles, spring rolls and check the origin of broths. That's it. Those products are not originally Thai anyway.

Now, I doubt that I have not been glutened during the month holiday in Thailand. I did not cook at all, all food was from food vendors or restaurants. I did not care about the soy sauce either (seems to be a controversial product anyway). For what it is worth, I did not have any negative reaction at all. Within 2 weeks my stool became textbook like and my skin (diagnosed as Seborrheic eczema, but guess it's DH) became smooth.

Here are the big questions:
1) If gluten only damages the villi, how can occasionally being glutened cause so much discomfort?
2) Why did I not have any severe reactions so far, have I really not been glutened?
3) Are reactions not showing because I got rid of my bacterial and parasite overgrowth first?
4) Does my refusal to use any form of dairy have any influence?
5) Or have I just been lucky so far and serious problems are yet to appear?

Verb "to Gluten"

09 May 2012 - 12:38 AM

When we say you've been "glutened," that something "glutens" you, or that something is "glutening" you, it means you're getting symptoms of gluten ingestion from that food product.

Perfectly clear and normal expression for us.
However, "to gluten" is not an existing verb.

In our quest to increase awareness of gluten intolerance, we should try to get this verb added to the language.
Unfortunately, I have no clue how to achieve this.

(btw, even Celiac is considered an error by the computer)