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

By VMCK
in Meet Up Room

 Share

Recommended Posts

trents Grand Master
trents
Posted

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
Elmarie
Posted

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
trents
Posted

Welcome to the forum, Elmarie!

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

Elmarie Newbie
Elmarie
Posted
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
trents
Posted
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
Olfy75
Posted

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
Eldene
Posted
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
Eldene
Posted
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
Olfy75
Posted

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
trents
Posted
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
Sammy7
Posted
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
Eldene
Posted

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
Rooks
Posted

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
Scott Adams
Posted

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
Rooks
Posted
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
Scott Adams
Posted

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
Eldene
Posted
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
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,874
    • Most Online (within 30 mins)
      7,748
    LeeD
    Newest Member
    LeeD
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      How long after being diagnosed with Celiac do you feel better?

      By trents · Posted

      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      How long after being diagnosed with Celiac do you feel better?

      By Nathan. · Posted

      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Recent blood test results check in - TTG- IGA

      By Scott Adams · Posted

      Most likely cross-contamination I believe.
    • cristiana
      How long after being diagnosed with Celiac do you feel better?

      By cristiana · Posted

      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Inhaler problem

      By knitty kitty · Posted

      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
×
×
  • Create New...