Anyone From South Africa

[trents]

Rooks, I would quickly remove your email address from your post. Spammers can harvest it and you likely would be getting tons of spam in your inbox. If people reading your post wish to contact you they can do it with no risk to you simply by using the forum's internal personal messaging system.

[Elmarie]

Hello 

I am from Vredendal on the West Coast in South Africa

I want to get tested just to have it on paper to be able to proof it to family and friends  

Very few people except it without making me feel that I have heard something somewhere……… I do not understand why it is so hard for people to get to understand that the symptoms are for real and it is because of the consumption of gluten  

I am glad that I found the group to have people to “talk” to  

 

 

[trents]

Welcome to the forum, Elmarie!

How can we help you? Did you have questions about testing for celiac disease?

[Elmarie]

9 hours ago, trents said:

Welcome to the forum, Elmarie!

How can we help you? Did you have questions about testing for celiac disease?

Good morning. 

Is a gluten test a blood test or how do doctors test for gluten allergy?

[trents]

2 minutes ago, Elmarie said:

Good morning. 

Is a gluten test a blood test or how do doctors test for gluten allergy?

Gluten allergy? Do you mean celiac disease? Celiac disease is not an allergy. It is an autoimmune disorder in which inflammation in the lining of the small bowel is triggered by the ingestion of gluten. The inflammation damages the villi that line the small bowel and also produces antibodies which can be detected by a blood test. Actually, there are several blood tests that can be run to detect different antibodies produced by the inflammation. The most common antibody test that is run is the tTG-IGA but there are several others and it is a good idea to have a "full celiac panel" run which includes these several tests. These immune responses are not necessarily the same for everyone so if a doctor is willing to order the full panel it is a good idea. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Another way to check for celiac disease is through and endoscopy with biopsy. In this test they run a scope down through the stomach into the small bowel and take samples of the lining to be analyzed by a lab for signs of damage.

Doctors may want you to get both a blood antibody test and a biopsy. It's important to keep consuming regular amounts of gluten (defined as 2 slices of wheat bread daily or the equivalent) for 6-8 weeks before the blood antibody test and two weeks before the endoscopy/biopsy. Quitting gluten early will invalidate either kind of test because it allows for healing which eliminates the inflammation to the lining of the small bowel and villi damage which is what the tests are looking for.

There is another gluten-related disorder that does not damage the villi of the small bowel but carries many of the same symptoms as celiac disease. It is called NCGS (Non Celiac Gluten Sensitivity) for which there is no test. Celiac disease must first be ruled out. The antidote for both conditions is total abstinence from gluten. We aren't sure what the immune response mechanism is for NCGS but it is not an allergy. NCGS is 10-12x more common than celiac disease.

It is possible for people to have an allergy to wheat but this forum is about gluten-related disorders apart from wheat allergies. Allergies engage an entirely different pathway of the immune system than either celiac disease or NCGS.

[Olfy75]

Hello 👋🏻 Joining this thread as I need suggestions for a good GI doctor in SA, Cape Town area, where I could get endoscopy as well. If you could also give me an idea on the cost I’d appreciate it.

Thank you for the help fellow SA peeps!

 

[Eldene]

On 6/17/2010 at 1:53 PM, VMCK said:

Hello all,

My daughter is 19 years old, its taken 2 years for the doctors here in SA to even mention the disease. And that is after paying and arm and a leg for doctors. blood tests and specialists.

I had never heard of Celiac and work with +-70 people of which 1 person knew of Celiac. For the first time in a long time I realized that we are far from a first world country. Gluten free products are VERY expensive and that's after you can locate them (mostly in health shops)

Are there any people who belong to this forum in South Africa? I could do with some advise and willing to share all i have discovered.

My heart bleeds for my daughter and because of this I understand how all of you feel and I empathize.

Yippee! I am só glad that I met you, VMCK! I am a pensioner in  Klawer, Western Cape. Moved here two months ago. I use to buy all my gluten free products from Checkers (Simple Truth brand), but am very limited in the country. If you are a State patient, your can ask to see a dietition. If she have lost weight, she should qualify for their Feeding Scheme. It is a shake/porridge similar to Future Life, but free! I have a challenge, because I am also milk (casein) intollerant. Maybe we can come into personal contact by email - is it allowed?

Alias Cheryl

[Eldene]

On 2/28/2011 at 1:03 PM, Brigit said:

Hi,

 

I grew up with a gran who was celiac, and remember her mainly just eating mielie bread and rice cakes. But recently I was diagnosed to, so have had to change my lifestyle.

 

I really didn't find it hard at all though. Just in the church I was at, I knew of 3 other people who were either gluten intolerant or had celiac. And we have fantastic healthshops in the Cape Town area, (two of the bigger ones: Wellness Wharehouse, Discem has a fantastic range) as well as some awesome restaurants. Tables, a restaurant on Nitida's winefarm, has a whole gluten free menu. Kuaia has gluten free options. Col Cacchio's has gluten free pizza bases. I've been really pleasantly surprised at the ease of things so far, even though endless lable reading is going to become a part of my life.

 

Anyway, I've only been doing research for about a week now in terms of what is available and, and have plenty more still to find out. I'm sure now, almost a year later you've found places near you that serves you well.

 

Hope your daughter is thriving and well!

Hi Brigit - what if you are 74 (previously fit and healthy) and can't afford ordering on-line? 😏

On 2/28/2011 at 1:03 PM, Brigit said:

Hi,

 

I grew up with a gran who was celiac, and remember her mainly just eating mielie bread and rice cakes. But recently I was diagnosed to, so have had to change my lifestyle.

 

I really didn't find it hard at all though. Just in the church I was at, I knew of 3 other people who were either gluten intolerant or had celiac. And we have fantastic healthshops in the Cape Town area, (two of the bigger ones: Wellness Wharehouse, Discem has a fantastic range) as well as some awesome restaurants. Tables, a restaurant on Nitida's winefarm, has a whole gluten free menu. Kuaia has gluten free options. Col Cacchio's has gluten free pizza bases. I've been really pleasantly surprised at the ease of things so far, even though endless lable reading is going to become a part of my life.

 

Anyway, I've only been doing research for about a week now in terms of what is available and, and have plenty more still to find out. I'm sure now, almost a year later you've found places near you that serves you well.

 

Hope your daughter is thriving and well!

Hi Brigit - what if you are 74 (previously fit and healthy) and can't afford ordering on-line? 😏

[Olfy75]

The problem with being celiac in South Africa is that “contamination” is almost never taken into account. There’s a widespread “confusion” between gluten free and celiac safe. You will find many “gluten free” products, but celiac safe is a completely different story (I.e. it doesn’t help much if the colcacchio pizza base is gluten-free, if they bake it with / in the same oven as all the other pizza … 🤷🏼‍♀️)

Considering how all “normal” orders are handled (read: mis-handled) it’s a … concerning concern. IYKYK

[trents]

2 hours ago, Olfy75 said:

The problem with being celiac in South Africa is that “contamination” is almost never taken into account. There’s a widespread “confusion” between gluten free and celiac safe. You will find many “gluten free” products, but celiac safe is a completely different story (I.e. it doesn’t help much if the colcacchio pizza base is gluten-free, if they bake it with / in the same oven as all the other pizza … 🤷🏼‍♀️)

Considering how all “normal” orders are handled (read: mis-handled) it’s a … concerning concern. IYKYK

I don't know that it is more of a problem in South Africa than it is in most places in the world. Studies show that the most people who claim to be eating gluten free are actually eating lower gluten in reality because of cross contamination and the biggest culprit is eating out.

[Sammy7]

On 6/17/2010 at 1:53 PM, VMCK said:

Hello all,

My daughter is 19 years old, its taken 2 years for the doctors here in SA to even mention the disease. And that is after paying and arm and a leg for doctors. blood tests and specialists.

I had never heard of Celiac and work with +-70 people of which 1 person knew of Celiac. For the first time in a long time I realized that we are far from a first world country. Gluten free products are VERY expensive and that's after you can locate them (mostly in health shops)

Are there any people who belong to this forum in South Africa? I could do with some advise and willing to share all i have discovered.

My heart bleeds for my daughter and because of this I understand how all of you feel and I empathize.

My daughter is 20 and we are from Durban, South Africa. It would be lovely if they could contact each other. 

[Eldene]

Durban is far from Klawer in Cape Town and I do not think we can use this platform as to were to buy what. 

😳

[Rooks]

Greetings,

  I am from South Africa,  living in the Free State Province. I make my own flour mixes, wet and dry spice mixes, gluten-free baking and cooking.  I also develop my own gluten-free recipes. 

[Scott Adams]

I just want to mention that we have "Clubs" on this forum, and one could, for example, create a South African Celiac Club here:

https://www.celiac.com/clubs/

[Rooks]

11 hours ago, Scott Adams said:

I just want to mention that we have "Clubs" on this forum, and one could, for example, create a South African Celiac Club here:

https://www.celiac.com/clubs/

greetings,  sorry I did not know that you have clubs etc. on the forum. I will have myself removed . Thank you.

[Scott Adams]

No need to remove yourself...I am just encouraging someone from South Africa to start a club here. Feel free to chat away in this topic, or to start a club...either is perfectly fine.

[Eldene]

On 6/17/2010 at 1:53 PM, VMCK said:

Hello all,

My daughter is 19 years old, its taken 2 years for the doctors here in SA to even mention the disease. And that is after paying and arm and a leg for doctors. blood tests and specialists.

I had never heard of Celiac and work with +-70 people of which 1 person knew of Celiac. For the first time in a long time I realized that we are far from a first world country. Gluten free products are VERY expensive and that's after you can locate them (mostly in health shops)

Are there any people who belong to this forum in South Africa? I could do with some advise and willing to share all i have discovered.

My heart bleeds for my daughter and because of this I understand how all of you feel and I empathize.

I live in the Vredendal area in Western Cape. Checkers' Simple Truth Products carry a GLUTEN FREE stamp, but is also expensive. Good luck!

[Izelle]

On 6/17/2010 at 1:53 PM, VMCK said:

Hello all,

My daughter is 19 years old, its taken 2 years for the doctors here in SA to even mention the disease. And that is after paying and arm and a leg for doctors. blood tests and specialists.

I had never heard of Celiac and work with +-70 people of which 1 person knew of Celiac. For the first time in a long time I realized that we are far from a first world country. Gluten free products are VERY expensive and that's after you can locate them (mostly in health shops)

Are there any people who belong to this forum in South Africa? I could do with some advise and willing to share all i have discovered.

My heart bleeds for my daughter and because of this I understand how all of you feel and I empathize.

Hi there,

Please can you tell me exactly how this disease is diagnosed?

I am also from South Africa

Regards

Izelle

[trents]

Welcome to the forum, @Izelle!

Normally, the diagnosis of celiac disease involves two stages. 

The first stage involves a simple blood test that looks for antibodies that are pretty specific to celiac disease. Celiac disease is an autoimmune disorder that attacks the lining of the small bowel which produces antibodies that can be detected in the blood with tests specifically designed for this purpose. There are a number of these tests that can be run. Some are more specific for celiac disease and thus more reliable than others. The two most common antibody tests ordered by physicians when diagnosing celiac disease are the "total IGA" and the "tTG-IGA" test. At least these two should always be ordered. Here is a an article outlining the subject matter of celiac antibody tests: 

If the tTG-IGA levels are 10x normal then it is becoming common practice in some countries to grant a celiac diagnosis on the bloodwork alone.

The second stage involves an endoscopy with biopsy of the small bowel lining to look for the damage to the small bowel lining typically caused by celiac disease's inflammatory process over time. This is usually done in response to one or more positives from the blood antibody testing and constitutes confirmation of the antibody testing to eliminate the possibility of false positives. 

[Izelle]

Thank you very much for your reply and the information. I much appreciate it

[trents]

@Izelle, you are welcome! It is important to know that beginning the gluten-free diet or even a reduced gluten diet previous to celiac testing will invalidate the testing. One should seek out testing before experimenting with eliminating gluten. Also, remember that celiac disease is not a food allergy. It is an autoimmune disease. When a celiac consumes gluten it triggers an autoimmune response that damages the lining of the small bowel. That can be confusing to a lot of people because it is an autoimmune response that involves food. So, allergy testing is of no use in diagnosing celiac disease. Of course, people can also have allergies to wheat, barley or rye (the three gluten-containing grains) but that is an entirely different immune system response.

Edited August 15 by trents