Jump to content

  • 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

How Many People That Are Diagnosed In This Forum Are African-American/black/hispanic/asian Or Any Other Ethnicity?

Mnicole1981

Recommended Posts

Mnicole1981 Enthusiast
Mnicole1981
Posted

I'm not sure where this should go...I am just so bothered by the fact that doctors believe that it's impossible for people of other ethnicities to have Celiac Disease. That makes people in that community unaware, to a point where they don't even care or even believe that themselves. While Vitamin D-deficiency is everywhere, it's very prevalent in African-American women. I almost wish I could put together screenings/blood tests for African-American/Hispanics/Asian/non-White community just to prove to some dense doctors how common it may be.

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

Celiac.com Sponsor (A8-M):


myadidas1981 Newbie
myadidas1981
Posted

I'm half hispanic and was diagnosed four months ago.

SleepyBunny Apprentice
SleepyBunny
Posted

They are starting to find that people of different ethnicities can have this problem.And people in America have all sorts of backgrounds. They shouldn't be using skin color to determine celiac. Maybe try typing in different races then celiac or gluten intolerance in a search engine. Find articles that come from reputable sources and take them to the dr. If you try a gluten free diet and you feel better you really don't need the dr's opinion. A lot of us on here have learned this. It does help to have proof from tests and all but your tests can still come back negative. Even people that fit into the "celiac profile" have trouble getting diagnosed so try not to feel too bad. Good luck to you! :)

kareng Grand Master
kareng
Posted

We have had a few posters at various times from Mexico. Several from India.

Takala Enthusiast
Takala
Posted

I could not look more "caw kaze shun" but I am part indigenous aka "got here a little earlier." Females of this group tend to have higher rates of auto immune diseases. You'd think that with the caw-kaze-shun being northern European/Irish (and my married name being that, conveniently adding to the whole identity as perceived ) this would have been considered earlier, but heck no. I was sent on my journey exploring the possibility by a random comment on an internet social board.

There is no such thing as a "purebread" :P human.

It's not only the doctors. When I find people in the real or on-line world with matching symptoms, I gently suggest they consider gluten free as an option, only to be frequently told that they "tried" the diet once, and it made no difference, so they can't possibly have it, because their doctor told them :ph34r: they have (fill in the blank, usually fibro or IBS). People get into their cocoons medicating themselves with beer or junk food or prescription meds or whatever, and they aren't going to come out, but they are always complaining how sick they are at the same time.

GFinDC Veteran
GFinDC
Posted

It's a real good question Nicole. Just about everything we thought was known on celiac 50 years ago has been shown to be wrong. It's not one in 10k people, it's 1 in 133. And you don't outgrow it. And it's not only a children's disease. And it's not only a Northern European disease either.

But IBS is an easy answer that doesn't take much effort. Someday maybe it will change. My understqnaqding is the genes in celiac are part of a cluster of genes that are linked to lots of auto-immune diseases. So there could be more things learned because of that. I think they ought to do the celiac blood panel on anyone that is suspected of having IBS or any auto-immmune disease. That might catch more cases.

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

It's a real good question Nicole. Just about everything we thought was known on celiac 50 years ago has been shown to be wrong. It's not one in 10k people, it's 1 in 133. And you don't outgrow it. And it's not only a children's disease. And it's not only a Northern European disease either.

But IBS is an easy answer that doesn't take much effort. Someday maybe it will change. My understqnaqding is the genes in celiac are part of a cluster of genes that are linked to lots of auto-immune diseases. So there could be more things learned because of that. I think they ought to do the celiac blood panel on anyone that is suspected of having IBS or any auto-immmune disease. That might catch more cases.

My mother was diagnosed with "IBS" almost 10 years ago. As an African-American woman who is not in denial about the possibilities of having Celiac disease, it pains me that I can't get the people in my family with identical issues to get tested. One aunt has agreed to be tested when she goes to the doctor next week. When I talked to my cousin, who a couple of months ago had a tanked Vitamin D level of 6, and is having serious neuropathy issues, hyperthyroidism, and high blood pressure, asked me did I want them to be tested to make me feel better. I was like, no, to make YOU feel better. People are so set in their ways.

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

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @cristiana Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to ...
    2. cristiana
      - cristiana replied to hjayne19's topic in Traveling with Celiac Disease
      1

      Mallorca Guide

      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about. I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type. There seems...
    3. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess.
    4. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety. I had awful anxiety at diagnosis, and that feeling of doom that you describe. My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me. I then got a phobia...
    5. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @trents thanks so much for the insights this helps alot. These were my metrics at celiac diagnosis. In which my diet has since changed over the past 3 months Magnesium: 0.80 mmol/L Vitamin B12: 1021 Vitamin D (25-OH): 102.8 I would say I do get tired after eating more carbs and the only thing that really helps me fall asleep...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,938
    • Most Online (within 30 mins)
      7,748
    K2coffee
    Newest Member
    K2coffee
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @cristiana   Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to hold throughout the night. I just haven’t been able to help the sudden increase in more days where I can’t fall asleep for hours - it’s those racing thoughts like you describe. I feel like a machine that’s running and can’t shut down.    I will try the epsom salt bath that’s a great suggestion. I think I’m probably working through some other food triggers that may be contributing as well with brain fog.    Anyways sorry to go off. It feels so reassuring finding this community and being able to chat with others. I was definitely feeling a bit crazy until I realized there are many others going through the same thing. 
    • cristiana
      Mallorca Guide

      By cristiana · Posted

      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about.   I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type.  There seems to be a thought in the UK that if you label something gluten free it will affect flavour etc and will put people off buying it!  However, in the case of Spain, it is almost as if the the Spanish see it as an endorsement of quality and flavour!  There is a supermarket called Mercadona and they label their produce very clearly. Paella should be gluten free so long as the chef use the right stock such as Knorr or a gluten-free homemade stock - you can check.  Most Mallorquins in catering speak English but if not, ask, "Contiene gluten?"  Tumbet is a wonderful dish if you like peppers, tomato, aubergines, garlic and olive oil!  A sort of variation on ratatouille.   Slow roast lamb shank should be safe, and there are endless fish dishes to choose from and salads.  Flan is made with eggs, sugar and caramel, and should be gluten-free.  Lots of gluten-free ice cream and sorbets, they should be clearly labelled. If you want specific restaurant recommendations, feel free to PM me. Cristiana    
    • trents
      Insomnia help

      By trents · Posted

      One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess. 
    • cristiana
      Insomnia help

      By cristiana · Posted

      Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety.  I had awful anxiety at diagnosis, and that feeling of doom that you describe.   My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me.  I then got a phobia to make things worse, linked to the fact that I had was suffering hypnopompic hallucinations (brief hallucinations on waking).  That was weird but I later learned they aren't all that uncommon, especially with people who suffer from aura migraines.   In fact I felt so unwell that I didn't even recognise it as 'anxiety'.  I remember googling my various symptoms and it was only that that  made me realise I was suffering from anxiety, which was nothing like 'feeling a bit nervous before taking an exam' or , say, making a speech.  This was a whole new ball game. As I came off gluten and healed, the anxiety started to get less and less.  It is not uncommon for coeliacs to have anxiety on diagnosis, so I hope that is reassuring to you.   And deficiencies can make it worse, or cause it, so are definitely worth investigating in further depth if you can.   There is certainly a big difference between 'normal' levels and 'optimum', as @trents says, and this excerpt from a British website and explains how with B12,, for example,  a normal level in one person can represent a deficiency in another: In the UK, normal B12 levels vary slightly by lab but generally, above 200 ng/L is considered sufficient, 100-145 ng/L indicates possible deficiency, and below 100 ng/L suggests likely deficiency, though levels between 146-200 ng/L may still warrant treatment if symptoms are present, as per North Bristol NHS Trust and NICE guidelines In fact, I understand levels are set much higher in other countries, such as Japan.  When I started to supplement B12 with high dose sublinguals I began to feel better, even though at diagnosis my levels were considered 'low normal'.    I too had a lot of muscle twitching which was likely due to deficiencies, but of course if someone has a lot of adrenaline in their system it will only make twitching worse.  I remember reading on this forum one should take magnesium tablets, and it did really help.  As a sportsperson you might like to try throwing a good handful of Epsom salts into a lukewarm bath, and have a soak for 20 mins, as it can be absorbed through the skin.  But be careful as you leave the bath, it can make you woozy! Lastly, to address the anxiety,  I found Dr Steve Llardi's book, albeit on Depression, incredibly helpful.  The Depression Cure: The Six Step Programme to Beat Depression Without Drugs.    Dr Llardi outlines a step-by-step plan for recovery from depression, which focuses on six key lifestyle elements that have largely disappeared in healthy doses from modern life:  physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep,  social connectedness, and meaningful, engaging activity.    The other book (and there is a website) which helped me understand anxiety and recover is Paul David's, At Last a Life, written by a one-time sufferer.  I live in the UK and if I could award a knighthood to anyone in this country, it would be to Paul.  I am so grateful that these books crossed my path.   Anyway, sorry for the length of this post.  I hope something might be of help. Cristiana  
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @trents thanks so much for the insights this helps alot.    These were my metrics at celiac diagnosis. In which my diet has since changed over the past 3 months Magnesium: 0.80 mmol/L Vitamin B12: 1021 Vitamin D (25-OH): 102.8 I would say I do get tired after eating more carbs and the only thing that really helps me fall asleep with insomnia is if I eat a banana or a snack. I have a follow up appointment soon so will look into those other B vitamin levels. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.