Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone From South Africa


VMCK

Recommended Posts

trents Grand Master

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.

  • 1 year later...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Elmarie Newbie

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 Grand Master

Welcome to the forum, Elmarie!

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

Elmarie Newbie
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 Grand Master
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.

  • 11 months later...
Olfy75 Apprentice

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!

 

  • 5 months later...
Eldene Contributor
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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Eldene Contributor
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 Apprentice

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 Grand Master
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 Newbie
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 Contributor

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 Newbie

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 Grand Master

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 Newbie
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 Grand Master

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.

  • 3 months later...
Eldene Contributor
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!

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,880
    • Most Online (within 30 mins)
      7,748

    schussb
    Newest Member
    schussb
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • gregoryC
      Just finished my second celebrity cruise. My first was on one of their oldest ships, it was awesome! Now we have sailed on the edge class. Wow! Not only do they have so many gluten-free options but the selection is mind blowing! Any given day you will have between 5 to 7 different gluten-free cakes to try. Yes that is right, one day at the coffee shop I had to choose between 5 gluten-free cakes not including the several puddings on display. So they gave me a small piece of each. 2 were great, 2 were just good, and 1 I did not enjoy. But never have I had the tough decision of which cake to eat?  These selections are from their normal options available for all guest. In the main dining room they always surprised me with some awesome desserts.  In my opinion the best pizza was on the Millennium class and best buffet on the Edge class. Although these two ship vary in size they are both consistent and serving high quality food from the main dinning room. The edge class gives you 4 “main” dining rooms (all included). I was unsure how this would work with my gluten-free diet? It worked great! I was able to order or see the next night’s menu for each of the four dinning venues finding that very little to no modifications needed to be made due to their extensive gluten free options.  The Millennium and Edge class ships provide the best gluten-free options from any of the cruise lines I have sailed with. You will find a larger selection and options on the edge class ships, however you will not be disappointed with the smaller Millennium class. Which is still my favorite cruise ship to date.   
    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
    • Scott Adams
      I guess using "GF" instead of "PL" would have been too easy! 😉
    • trents
      I was wrong, however, about there being no particular health concerns associated with high total IGA: https://www.inspire.com/resources/chronic-disease/understanding-high-iga-levels-causes-impacts/ So maybe the physician's "borderline" remark is relevant to that.
×
×
  • Create New...