Filipino Celiac

[jhun]

I'm a Filipino diagnosed with celiac a month ago. Haven't heard of the condition all my life until last month. My symptoms are vague and mainly bloating, belching and flatulence. Since I was diagnosed I've been reading alot and browsing this forum everyday and found out that this condition is genetic, I am 100% Filipino and was wondering how did I get this disease.

In the Philippines, a GI diagnosed me with IBS then I saw a second GI who diagnosed me with chronic non-specific colitis, both of them did a colonoscopy. Now, I saw a third GI in the middle east who diagnosed me with celiacs through a german laboratory. I am not biopsy confirmed and my GI doctor said it is not necessary since I have a positive lga and an elevated tTG.

I don't know how I got it since all of my relatives doesn't have this problem at all, I am the only one I know as of now.

[happygirl]

Celiac is a genetic disorder in the fact that it is related to two main genes: HLA DQ2 and HLA DQ8. A large amount of the American population has one or both of these genes (30-40%), but just having the genes doesn't mean that an individiual will have it....1 in 133 Americans has Celiac. About 90% of Celiacs has HLA DQ2, about 8% has HLA DQ8, and the remaining 1-2% do not have one of the above mentioned genes.

I don't think most of us had heard about Celiac until we got it I know I didn't! I didn't know what gluten was!

So, you don't have to have anyone else in your family to have it. There are many board members that are the only diagnosed Celiac. There are many that have multiples.

However, the risk for your first degree relatives is higher to have Celiac than someone who is not related to a Celiac. Celiac experts recommend that ALL first degree relatives of a diagnosed Celiac are tested.

[Ursa Major]

Hi Jhun, and welcome to this board. My take on your puzzlement is this:

I don't think people in the Philippines traditionally eat wheat, rye or barley. It is possible that the majority can't tolerate it, but if they never eat it, then they never get active celiac disease. Once you start adopting a diet foreign to your heritage, you may suddenly get sick, because you can't tolerate it. By the way, it appears that ALL Asians are intolerant to dairy. That could be another problem if you have started eating dairy from cows. In fact, all your symptoms could also be caused by dairy.

So, I'm afraid that you'll have to be getting back to a more traditional Filipino diet, and abandon gluten and dairy.

I hope you get better soon!

[Viola 1]

I have a Chinese lady friend with Celiac. We figured out that many nationalities carry the genes, but don't actually have a problems until they go on a gluten laden American diet.

And of course something will trigger the symptoms, whether it be a surgery, accident or in the case of the female population, a pregnacy.

[Bubs]

Many Filipinos also have a Spanish ancestry, and many folk from Spain are also Celts, so maybe that could also be it. I am of Irish/Scottish/Scandanavian descent but only seem to suffer DH - although I have family members who suffer GI problems. As a sufferer of DH I have often wondered if people of Asian extraction have a reaction to wheat in the form of Asian Acne (which seems to me to be becoming a big problem), as having lived and worked in Indonesia (and visted much of Asia too) I have seen the mad, mad rise of the use of wheat and milk products there. Anyway, think positive. I suffered for 30 years before it was figured out that I did not have psoriasis! Life gets beter.

Bubs

I'm a Filipino diagnosed with celiac a month ago. Haven't heard of the condition all my life until last month. My symptoms are vague and mainly bloating, belching and flatulence. Since I was diagnosed I've been reading alot and browsing this forum everyday and found out that this condition is genetic, I am 100% Filipino and was wondering how did I get this disease.

In the Philippines, a GI diagnosed me with IBS then I saw a second GI who diagnosed me with chronic non-specific colitis, both of them did a colonoscopy. Now, I saw a third GI in the middle east who diagnosed me with celiacs through a german laboratory. I am not biopsy confirmed and my GI doctor said it is not necessary since I have a positive lga and an elevated tTG.

I don't know how I got it since all of my relatives doesn't have this problem at all, I am the only one I know as of now.

[jhun]

Hi to everyone and thanks for your thoughts. Hey Bubs you reminded me of my grandmother, yeah she's spanish, at first I was just thinking of my first degree relatives. Could be a possibility that I got the genes from her. She's suffering now from colon cancer, probably she also had celiac disease which led to her complications now. It's hard to get a diagnosis of celiacs in the Philippines since this condition is not well known there.

Planning to see a fourth GI for endoscopy and biopsy. My GI now doesn't want to do the procedure even if I insisted, he said there is no point in doing it. Just for my satisfaction I'm doing this.

[Ursa Major]

Are you on the gluten-free diet now? If you are, then an endoscopy and biopsy will be useless, because your villi are healing. It is very likely that you'll end up with a false negative result, and the GI telling you that you definitely don't have celiac disease, based on the 'perfect' biopsy.

So, if you have been gluten-free, don't do the biopsy.

Really, if your bloodwork was positive, and you have responded well to the diet, that should be all the confirmation you need.

[Rusla]

Hi to everyone and thanks for your thoughts. Hey Bubs you reminded me of my grandmother, yeah she's spanish, at first I was just thinking of my first degree relatives. Could be a possibility that I got the genes from her. She's suffering now from colon cancer, probably she also had celiac disease which led to her complications now. It's hard to get a diagnosis of celiacs in the Philippines since this condition is not well known there.

Planning to see a fourth GI for endoscopy and biopsy. My GI now doesn't want to do the procedure even if I insisted, he said there is no point in doing it. Just for my satisfaction I'm doing this.

Well, it is and has been difficult for most of us in North America to get a diagnosis for Celiac Disease also. As most people originate in some form from European background we all have the potential to have the genes. I am the only diagnosed Celiac in my family. I am from Scandinavian and Italian background. I figure my aunt who has all the same problems I have right down to the teeth is Celiac but never diagnosed.

[jhun]

Are you on the gluten-free diet now? If you are, then an endoscopy and biopsy will be useless, because your villi are healing. It is very likely that you'll end up with a false negative result, and the GI telling you that you definitely don't have celiac disease, based on the 'perfect' biopsy.

So, if you have been gluten-free, don't do the biopsy.

Really, if your bloodwork was positive, and you have responded well to the diet, that should be all the confirmation you need.

Hi Ursa, I've been in the gluten free and lactose free diet for a month now. I am eager to go for the biopsy because there are no significant improvements in my symptoms. I still have the borborygmi, belching and flatulence I had before going gluten-free. Do you think one month will affect the accuracy of the biopsy? My blood test showed like this:

Gliadin lgA (IFT) - (result) pos - (units) titer - (reference range) <1:10

Endomysium lgA (IFT) - (result) <1:10 - (units) qualitative - (reference range) <1:10

Anti tTG lgA/lgG (EIA) - (result) 1.21 "high" - (units) ratio - (reference range) <1.0

What do you think about my blood work? Is it really positive?

[happygirl]

you had a positive tTG, which is highly indicative of Celiac.

a biopsy 4 weeks gluten free will give you two possibilities:

1. if it is positive, then you have another confirmation.

2. if it is negative, you can't know if you are "really" negative....the point is to go gluten free, and your villi heal, so that your intestines and a non-Celiac look the same. Keep in mind, you will now have a "negative biopsy" on your records --- and doctors might say you "don't" have it without keeping in mind the circumstances.