Celiac Makes People Live A Silly-Act Life!

Celiac Disease is no laughing matter. It does seem to make us behave in ways that non-Celiac's might think was a "Silly Act!"

Below is an email I wrote to a fellow Celiac sufferer in the Philippines. It is a good introduction why we need a Celiac Society here in the Philippines. Let this serve as the Official Pre-site for the the Celiac Society - Philippines.

This email is both personal and painful, I decided to share it, unedited, so that others living in the Philippines with Celiac will not feel that they are alone in this fight for their lives! This is no Silly-Act, this is Celiac...

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Good morning Sally,

I have been in the Philippines since 1986 (22 years), with only a little time out of the country, the last was a trip to Sydney in 1996 for a few weeks vacation at a friends.

When my family started to convince me that I had Celiac Disease, I couldn't find any information in the Philippines at all... the resources are very scarce. Likewise people in other countries have really no idea what it is like living in the Philippines. I am sure you are aware of this by now, based on what some of the answers are to your posts on the forum.

Based on research I have done on my own (and I freely admit that I am a computer guy with a few of doctor friends - NOT a medical professional). Filipinos do get Celiac... they just have symptoms in other ways (like killer diabetes!).

I answered a post on another forum (where I live right now) from a Celiac man planing a trip to visit here, asking about Gluten Free products (flour, crackers, etc.) and I was able to share what I have found so far. Someone else helped me to find a soy sauce substitute...

Suddenly my wife suggested that we are in a position (we publish websites in 169 countries) to do something to help people at home. "Home Made Health!" We converted alantait.net (that is my name) to Home Made Health! It is about my Journey with Celiac Disease and Dermatitis Herpetiformis (CD/DH). My Journey to better health!

I really felt your frustration, as I myself have gone through much suffering because of gluten.

Because gluten is not thought to be a Filipino problem, cross contamination of food is what you will have the most problems with. For example, on my x-files page at www.alantait.net I tell a story about how I had the worst gluten reaction so far by eating corn grits! In short, the contamination was from flour noodles made on the same machine that made bihon (rice noodles) that was cooked in a washed aluminum pot that was then used to cook my corn! Everything in my house should have been gluten free - it was multipule cross contamination that got to me!

I have learned that aluminum can hold gluten through a half dozen washings (Tip: Use Stainless Steel!). Likewise, that all noddles in the Philippines, like oats in the USA, that are not imported and marked gluten free (or home made) should be considered cross contaminated.

I also had a reaction while eating some ketchup. The brand, in the USA, is gluten free. But in the Philippines? These companies are not concerned with gluten and most of the time have a different formula than the same brand in the USA. I learned to be careful - labels need to be consider like a skeptic would!

So we started the Gluten Free Philippines Community Forum on the Kubo4 Forums (just click the link from the Home Made Health site (www.alantait.net). We hope that more and more people will contribute information that works for them. As we learn to live with this, my wife and I plan to expand the Gluten Free Sections of alantait.net and make sub-sites for Celiac and Gluten Free.

We have an idea to create a Celiac Society of the Philippines.

To give you an idea of how important this is to me and my family, here is a short description of what I go through with even the slightest gluten (5 parts per million is too much!).

First I will notice Intestinal cramps that night. I won't sleep well at all.

12 hours: By morning, I will have a nagging headache. My Dermatitis Herpetiformis on my legs will start to swell and will feel like both legs are on fire.

24 hours: That evening I will be in a very bad mood. Hunger will grip me and I will be craving all the wrong food. My blood pressure begins to rise.

36 hours: The next morning, my legs are blistering. Red dots appear all over my upper body. Moles all over my body will swell, itch and there is no comfort for them. My bad mood swing turns to anger and this day I will try not to yell, but I will yell, and then feel so helpless, as if I have gone crazy. Amazing hunger grips me. This continues for some time. My wife says her Honeybun has gone far away and cannot be found. I cannot focus on any task. My blood pressure may be 50-80 points higher that usual. This all continues for a while...

72 hours: Some of the symptoms begin to dissipate slowly. I feel bloated by all the food I have consumed in my anger. Depression sets in, often with suicidal thoughts.

108 hours: Assuming I had no gluten while I was angry, I wake up to a semi normal day. The red dots have turned brown and are fading. The swelling in my DH and moles is returning to normal, a fruit salad satisfies my hunger for breakfast. I have lost four days of my life, have terrorized my family and I remember what happened. Guilt hits me as my wife tries to comfort me that she understands. It will be three more days before I have a normal work load again.

Sally, that is my typical reaction to any amount of Gluten. As you can see, it is sever and not only hurts me, but hurts my family. It is almost like Dr. Jekyll and Mr. Hide or Dr. David Banner and the Incredible Hulk. The only power I have over this Gluten Monster is to completely avoid Gluten!

The only way I can find a "Gluten Free Philippines" lifestyle is to unite the people in the Philippines who need to be Gluten Free - including the 8-18 million Filipinos that do not yet know this is their illness!

By sharing our successes and failures at the Gluten Free Philippines Forum http://kubo4.com/community/index.php#15 We help ourselves by helping each other. What works for me and what works for you are maybe not the same... However, by sharing our experiences we can still benefit.

For example, I knew a man who had a Celiac Biopsy done in the Philippines. The result was negative for Celiac, positive for some other kind of inflammation. He actually paid to acquire all the testing, slides, photos, etc. He took them to a doctor/lab in Australia and they said that the Biopsy was conclusive evidence that he had Celiac. The problem is that the labs in the Philippines never test for Celiac and have no experience testing for Celiac - so they do not know what to look for!

Even doctors that know what Celiac is (I am blessed with one), often are influenced and test for less likely things, because accurate Celiac testing is not available and largely unknown. Likewise, Celiac is not considered a medical problem beyond diagnostic care. At a birthday party I was attending I have had one doctor tell me, "Celiac Disease is not a problem, just don't eat gluten!" The same doctor then advised me to try something (food) that was obviously made mainly of flour and he suggested that I just dip it into the Soy Sauce! Flour (Gluten), Soy Sauce (more gluten!). When I asked him if he thought that food had any gluten in it, this doctor thought a moment and then told me that he was sure it had no gluten because it was Chinese food and not American!

The idea of Home Made Health is not about distrusting doctors - it is about self empowerment. We have to take steps to take care of ourselves. We have to make our own Gluten Free Philippines!

When I was searching for Celiac info I ran across one of your forum postings and I just want to encourage you that you are NOT alone in this. I plan to find or convert a doctor in the Philippines to be a Celiac Doctor! I am determined because no way do I want to stop living in the Philippines because of some disease that I think I can beat!

If you post on the Gluten Free Philippines Forum, for sure I will read it. I know of a hand full of other people who are also following this forum in the Philippines. Together, all our lives will improve.

You are not alone Sally...

Sincerely,

Lan
aLan Tait