OVERWHELMED, TRYING TO COPE

[Mary Jean]

Hi Goodday, my  full name is Dawn Mary Jean - Pierre, I live in Durban, Kwazulu Natal ,  South Africa,

I am 46 years old, and  was shocked to discover that I got celiac

I lack iron in my blood, my lower leg is numb, I get running stomach and get tired alot

,still able to work, the worse is gas in chest which is a never ending  nightmare,

I cannot eat bread, spagetti or macaroni without gettting seriously sick,

I am doing my best to cope, learn and process this information,

I cannot donate blood,  once after dinner my face got so swollen I couldnot even recognise myself, 

I was told that South Africans donot get celiac

That only White people from developed countries get celiac,  so how on earth did I get it ?

I was told that celiac is genetic,  my biological father is an American

a legal German immigrant to America, he came to South Africa, where he meet my mom, three decades later he returned  to visit me

I am scared, trying to understand everything, I know that my intestine is damaged,  that I donot absorb nutrients from food

My  American friends are helping me, I am on a  Probiotic, which I take every Monday and Friday,

still learning how to eat correctly, Thanks

THANKYOU ! FOR ACCEPTING ME AND GIVING ME A CHANCE AT LIFE

[Guest 648]

Good luck to you Mary Jean.👊   I hope things get better for you.  I'm new around here too and I have learned so much from the helpful people here.👏

.......648

[Russ H]

Hello Mary Jean and welcome to the forum. I'm sorry you are struggling with the condition. It gets a lot easier as you learn what to eat and adapt your habits. As your gut heals you will also begin to feel much better. It can take up to 2 years to completely heal but most people improve much more quickly than this. I had terrible gas and it took 3 months to go when I started a gluten free diet.

People from anywhere in the world can develop coeliac disease. It is generally more prevalent in Europe than in Africa but the region with the highest prevalence is the Western Sahara where 5.6% of the population have it. It is believed that a genetic predisposition combined with an environmental factor triggers it. The environmental factor is not known but certain viral infections have been proposed.

Are you taking any vitamin and mineral supplements to help with your low iron?

 

[trents]

Hello, Mary Jean! We now know that the antibody tests used to detect celiac disease are more reliable on people of white European descent. They miss 80% of people who actually do have celiac disease who are of black African descent. That racial difference in the testing accuracy may be largely responsible for the original thought that blacks do not get celiac disease. There are other factors too such as the availability of testing and healthcare resources in underdeveloped countries. We now know that blacks and Asians can develop celiac disease as testing and the availability of healthcare has improved in the countries where non whites predominate.

I echo what Russ H said about beginning vitamin and mineral supplements. We commonly recommend to new celiacs who join this forum to star taking a good adult multivitamin, B-complex, under the tongue (aka, "sublingual") B12, magnesium (the glycinate form of magnesium) and zinc. In your case, because of your anemia, you might add a buffered iron supplement. All vitamins and supplements need to be confirmed as being gluten free. Some pills have wheat starch as a filler.

In the meantime, this might be helpful:

 

[Scott Adams]

It is very strange that anyone, let alone a doctor, would tell you that you could not get celiac disease because you are South African. Anyone with the genetic markers could get celiac disease, and at least 1% of Europeans have it.

[No more doughnuts]

11 hours ago, Mary Jean said:

Hi Goodday, my  full name is Dawn Mary Jean - Pierre, I live in Durban, Kwazulu Natal ,  South Africa,

I am 46 years old, and  was shocked to discover that I got celiac

I lack iron in my blood, my lower leg is numb, I get running stomach and get tired alot

,still able to work, the worse is gas in chest which is a never ending  nightmare,

I cannot eat bread, spagetti or macaroni without gettting seriously sick,

I am doing my best to cope, learn and process this information,

I cannot donate blood,  once after dinner my face got so swollen I couldnot even recognise myself, 

I was told that South Africans donot get celiac

That only White people from developed countries get celiac,  so how on earth did I get it ?

I was told that celiac is genetic,  my biological father is an American

a legal German immigrant to America, he came to South Africa, where he meet my mom, three decades later he returned  to visit me

I am scared, trying to understand everything, I know that my intestine is damaged,  that I donot absorb nutrients from food

My  American friends are helping me, I am on a  Probiotic, which I take every Monday and Friday,

still learning how to eat correctly, Thanks

THANKYOU ! FOR ACCEPTING ME AND GIVING ME A CHANCE AT LIFE

This is a serious disease.  PLEASE look up Dr. Steven Gundry and his book, The Plant Paradox.  I was so very sick 3 years ago. I was eating "gluten free", however, learned that with this autoimmune disease, you must stay away from grains and lectins!  I his book, he gives a list of what is safe to eat and what is NOT safe.  I have followed his diet and have not had a flare up.

People need to understand that gluten is only one TYPE of lectin.  Many fruits and vegetables, legumes, grains, have lectins!  So, please look up Dr. Steven Gundry and his book.  He will explain the danger of lectins and how they inflame your intestines. 

I wish you well.

[Mary Jean]

3 hours ago, Scott Adams said:

It is very strange that anyone, let alone a doctor, would tell you that you could not get celiac disease because you are South African. Anyone with the genetic markers could get celiac disease, and at least 1% of Europeans have it.

ok, I am no expert, I never knew this illness even existed, , so South Africans do suffer from celiac,   ok, which group suffers most or has more knowledge when it comes to celiac, regardless of race or orgin, ? I am just trying to understand and put the pieces together, I have lived in Durban my whole life, I have studied my mom side of the family and have found nothing, if there are those that suffer from from celiac  , they have not mentioned it to me, its not a matter of blaming people, its a matter of understanding this disease, gathering information in order to overcome it,  as I said I am not a teacher nor a doctor nor knowledgeable at all , as far as celiac is concerned,  I go according to what others tell me, and the information  received,  , did I receive this disease from my dad ?, I have no idea,   if I did , do I blame him  ?,  NO  I doNot,   ,  blaming people suffering from any illness including celiac is in my opinion is  stupid,  to me it is a shock, cause no one I know personally has celiac, personally means those living here, no one I know here has celiac,  and I was told by others that its not a common illness here, I honestly donot know,  but I am learning

[Russ H]

Gluten is quite different to lectins, most of which are inactivated by cooking. Avoiding lectins would be very restrictive - avoiding gluten is difficult enough. Coeliac disease is a specific immune response to gluten.

You can read about Steven Gundry and his pseudoscience here:

https://sciencebasedmedicine.org/the-plant-paradox-steven-gundrys-war-on-lectins/

[Mary Jean]

12 minutes ago, No more doughnuts said:

This is a serious disease.  PLEASE look up Dr. Steven Gundry and his book, The Plant Paradox.  I was so very sick 3 years ago. I was eating "gluten free", however, learned that with this autoimmune disease, you must stay away from grains and lectins!  I his book, he gives a list of what is safe to eat and what is NOT safe.  I have followed his diet and have not had a flare up.

People need to understand that gluten is only one TYPE of lectin.  Many fruits and vegetables, legumes, grains, have lectins!  So, please look up Dr. Steven Gundry and his book.  He will explain the danger of lectins and how they inflame your intestines. 

I wish you well.

Yes I will get this book, THANKYOU !

[Mary Jean]

4 minutes ago, Russ H said:

Gluten is quite different to lectins, most of which are inactivated by cooking. Avoiding lectins would be very restrictive - avoiding gluten is difficult enough. Coeliac disease is a specific immune response to gluten.

You can read about Steven Gundry and his pseudoscience here:

https://sciencebasedmedicine.org/the-plant-paradox-steven-gundrys-war-on-lectins/

THANKYOU ! 

[Russ H]

3 minutes ago, Mary Jean said:

Yes I will get this book, THANKYOU !

This won't help you. Coeliac disease is a serious condition, and you need to concentrate on reliable sources of information to help your recovery. This forum is full of knowledgeable people who can point you in the right direction.

[Mary Jean]

3 hours ago, Scott Adams said:

It is very strange that anyone, let alone a doctor, would tell you that you could not get celiac disease because you are South African. Anyone with the genetic markers could get celiac disease, and at least 1% of Europeans have it.

Please sir I am NOT a professional at all when it comes to celiac,  but  what I find difficult is that those who   ARE   PROFESSIONALS,  NOT  IN   AGGREEMENT

[Mary Jean]

8 minutes ago, Russ H said:

This won't help you. Coeliac disease is a serious condition, and you need to concentrate on reliable sources of information to help your recovery. This forum is full of knowledgeable people who can point you in the right direction.

THANKYOU  cause I honestly know nothing about celiac, but I will learn, and I will cope

[shadycharacter]

28 minutes ago, Mary Jean said:

ok, I am no expert, I never knew this illness even existed, , so South Africans do suffer from celiac,   ok, which group suffers most or has more knowledge when it comes to celiac, regardless of race or orgin, ? I am just trying to understand and put the pieces together, I have lived in Durban my whole life, I have studied my mom side of the family and have found nothing, if there are those that suffer from from celiac  , they have not mentioned it to me, its not a matter of blaming people, its a matter of understanding this disease, gathering information in order to overcome it,  as I said I am not a teacher nor a doctor nor knowledgeable at all , as far as celiac is concerned,  I go according to what others tell me, and the information  received,  , did I receive this disease from my dad ?, I have no idea,   if I did , do I blame him  ?,  NO  I doNot,   ,  blaming people suffering from any illness including celiac is in my opinion is  stupid,  to me it is a shock, cause no one I know personally has celiac, personally means those living here, no one I know here has celiac,  and I was told by others that its not a common illness here, I honestly donot know,  but I am learning

The genes that predispose for celiac are quite common, but not everyone with the genes develops celiac, so you can have relatives with the genes who never developed celiac, or perhaps never were diagnosed.

I found a South African site about celiac: https://celiacsafe.co.za/

that says that the number of celiacs in South Africa is unknown. Its a good thing to have a diagnosis, because then you know what to avoid. People sometimes go undiagnosed for too long.

[Mary Jean]

2 minutes ago, shadycharacter said:

The genes that predisposes for celiac are quite common, but not everyone with the genes develop celiac, so you can have relatives with the genes who never developed celiac, or perhaps never were diagnosed.

I found a South African site about celiac: https://celiacsafe.co.za/

that says that the number of celiacs in South Africa is unknown. Its a good thing to have a diagnosis, because then you know what to avoid. People sometimes go undiagnosed for too long.

THANKYOU !  Yes there,  are blood tests and other tests, like sending a camera down my throat to check out my intestines,  some tests are affordable, while others are not,  they say that once the damage is done to the intestines, it can take up to seven years for it to fully heal on a strict gluten free diet, use to be able to eat and enjoy whatever food I liked,  but I get use to this gluten free diet, cause I see this celiac impacts alot more than a persons'  intestines,   will speak to my doctor, THANKYOU !

[Mary Jean]

9 hours ago, 648 said:

Good luck to you Mary Jean.👊   I hope things get better for you.  I'm new around here too and I have learned so much from the helpful people here.👏

.......648

THANKYOU !   APPRECIATED

[No more doughnuts]

42 minutes ago, No more doughnuts said:

This is a serious disease.  PLEASE look up Dr. Steven Gundry and his book, The Plant Paradox.  I was so very sick 3 years ago. I was eating "gluten free", however, learned that with this autoimmune disease, you must stay away from grains and lectins!  I his book, he gives a list of what is safe to eat and what is NOT safe.  I have followed his diet and have not had a flare up.

People need to understand that gluten is only one TYPE of lectin.  Many fruits and vegetables, legumes, grains, have lectins!  So, please look up Dr. Steven Gundry and his book.  He will explain the danger of lectins and how they inflame your intestines. 

I wish you well.

See if you can find Cassava pasta.  No lectins.  It is made from a root, so it is safe.  Also, if you eat beef or chicken, make sure it is "grass fed" beef or chicken that organic.  If animals eat grains, it will pass on the grain to your system.  Hope this helps.  I know how hard this is.  Believe me.  I was so very sick and swollen, migraines, muscle and joint pain, blistery rash.

Ever since I followed the lectin free diet, I am so much better.  Hope this helps.

[Scott Adams]

1 hour ago, No more doughnuts said:

This is a serious disease.  PLEASE look up Dr. Steven Gundry and his book, The Plant Paradox.  I was so very sick 3 years ago. I was eating "gluten free", however, learned that with this autoimmune disease, you must stay away from grains and lectins!  I his book, he gives a list of what is safe to eat and what is NOT safe.  I have followed his diet and have not had a flare up.

People need to understand that gluten is only one TYPE of lectin.  Many fruits and vegetables, legumes, grains, have lectins!  So, please look up Dr. Steven Gundry and his book.  He will explain the danger of lectins and how they inflame your intestines. 

I wish you well.

We've done a few articles on lectins for those who are interested:

https://www.celiac.com/search/?&q=lectins&type=cms_records2&search_and_or=and&search_in=titles 

[Mary Jean]

13 hours ago, Mary Jean said:

Hi Goodday, my  full name is Dawn Mary Jean - Pierre, I live in Durban, Kwazulu Natal ,  South Africa,

I am 46 years old, and  was shocked to discover that I got celiac

I lack iron in my blood, my lower leg is numb, I get running stomach and get tired alot

,still able to work, the worse is gas in chest which is a never ending  nightmare,

I cannot eat bread, spagetti or macaroni without gettting seriously sick,

I am doing my best to cope, learn and process this information,

I cannot donate blood,  once after dinner my face got so swollen I couldnot even recognise myself, 

I was told that South Africans donot get celiac

That only White people from developed countries get celiac,  so how on earth did I get it ?

I was told that celiac is genetic,  my biological father is an American

a legal German immigrant to America, he came to South Africa, where he meet my mom, three decades later he returned  to visit me

I am scared, trying to understand everything, I know that my intestine is damaged,  that I donot absorb nutrients from food

My  American friends are helping me, I am on a  Probiotic, which I take every Monday and Friday,

still learning how to eat correctly, Thanks

THANKYOU ! FOR ACCEPTING ME AND GIVING ME A CHANCE AT LIFE

THANKYOU !  TO ALL WHO HAVE REPLIED, THANKYOU !   YOU ALL ARE FINDING A SOLUTION, THANKYOU !  I AM TAKING NOTE OF AS MANY AS I CAN, 

[Mary Jean]

12 minutes ago, No more doughnuts said:

See if you can find Cassava pasta.  No lectins.  It is made from a root, so it is safe.  Also, if you eat beef or chicken, make sure it is "grass fed" beef or chicken that organic.  If animals eat grains, it will pass on the grain to your system.  Hope this helps.  I know how hard this is.  Believe me.  I was so very sick and swollen, migraines, muscle and joint pain, blistery rash.

Ever since I followed the lectin free diet, I am so much better.  Hope this helps.

YES IT HELPS, AND I AM GLAD YOU ARE FEELING BETTER, THANKYOU !

[Russ H]

14 minutes ago, No more doughnuts said:

If animals eat grains, it will pass on the grain to your system. 

 

This is false.

[Russ H]

3 minutes ago, Mary Jean said:

YES IT HELPS, AND I AM GLAD YOU ARE FEELING BETTER, THANKYOU !

I think that you should concentrate on getting used to a strict gluten free diet and dealing with any nutritional deficiencies that you have (e.g. iron). That is difficult enough without disappearing down the rabbit hole of unproven pseudo-scientific diets.

[Mary Jean]

8 hours ago, Russ H said:

Hello Mary Jean and welcome to the forum. I'm sorry you are struggling with the condition. It gets a lot easier as you learn what to eat and adapt your habits. As your gut heals you will also begin to feel much better. It can take up to 2 years to completely heal but most people improve much more quickly than this. I had terrible gas and it took 3 months to go when I started a gluten free diet.

People from anywhere in the world can develop coeliac disease. It is generally more prevalent in Europe than in Africa but the region with the highest prevalence is the Western Sahara where 5.6% of the population have it. It is believed that a genetic predisposition combined with an environmental factor triggers it. The environmental factor is not known but certain viral infections have been proposed.

Are you taking any vitamin and mineral supplements to help with your low iron?

 

NO i AM NOT TAKING ANY VITAMINS , ONLY THE PROBIOTICS, BUT I WILL START TAKING VITAMINS SOON, THANKYOU !

[No more doughnuts]

2 hours ago, No more doughnuts said:

This is a serious disease.  PLEASE look up Dr. Steven Gundry and his book, The Plant Paradox.  I was so very sick 3 years ago. I was eating "gluten free", however, learned that with this autoimmune disease, you must stay away from grains and lectins!  I his book, he gives a list of what is safe to eat and what is NOT safe.  I have followed his diet and have not had a flare up.

People need to understand that gluten is only one TYPE of lectin.  Many fruits and vegetables, legumes, grains, have lectins!  So, please look up Dr. Steven Gundry and his book.  He will explain the danger of lectins and how they inflame your intestines. 

I wish you well.

 

1 hour ago, Mary Jean said:

THANKYOU !  TO ALL WHO HAVE REPLIED, THANKYOU !   YOU ALL ARE FINDING A SOLUTION, THANKYOU !  I AM TAKING NOTE OF AS MANY AS I CAN, 

Hi Mary Jean, if you can youtube, Dr. Steven Gundry is on youtube.

(He is a cardiologist.  Even though he doesn't have celiac disease, he also 

does a lectin free, grain free, gluten free diet.)  In the search bar, just 

write in Dr. Steven Gundry Plant Paradox diet or lectin free diet.  I forgot to mention, I also was anemic.  I am no longer anemic following his diet.

I am not trying to force anything.  It is your choice to get as much information as you possibly can and try and see what works best for you.

Like I said, I haven't had a flare up in 3 years every since his diet.

I wish you well.