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San Diego Celiacs?

Wheat Wacker

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Wheat Wacker Rookie
Wheat Wacker
Posted

Hi, I was diagnosed last march, I figured out how to eat gluten free, only eat food I prepare and know my food, no guessing. That theory has seemed to work so far, I was captaining a tug boat in Egypt and traveling so it was really my only option.

Thank god I'm not still in Egypt now... but since coming back to San Diego it's been really hard to deal with fitting back in to the western world as a Celiac. I don't know anyone or have even talked to anyone with the disease before. I have been trying to find support groups or meetings where I can meet other celiacs to learn from them, but hav'nt found any yet.

I'm 29, grew up in SD, been living overseas and traveling for years, don't really know to many people in SD these days, would love to meet some fellow Celiacs. Feel free to contact me, Thanks Dylan

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Financialman Newbie
Financialman
Posted

Hey Dylan,

Unfortunately there are plenty of people with Celiac Disease so you won't have any problem finding them when you really start looking. The membership on this forum is in the tens of thousands from all over the place. If you Google Celiac support groups for your state you should get a listing of support groups in your area. As Celiac disease becomes more prevalent, and it is, more and more support groups will spring up. You can also go to the Gluten Intolerence Group site and find out a lot of information. I am not in San Diego but anyone on this forum would probably be willing to talk on line to discuss questions and issues you have. Just let everyone know. Good luck and welcome home.

Wheat Wacker Rookie
Wheat Wacker
Posted
  • Author

Thanks for the reply and advice, there are a few groups in SD But they meet infrequently and I have not been able to go to any meetings.

I actually drove up to Del Mar to go to a gluten free life style seminar at a store called JIMBOS, I was going to be late so I called them to make sure I could sneak in, they told me no problem and to come. When I got there an employee rudly told me I could not go into the seminar becuase it would be disrubtive. I will never be shopping there and have bitter feelings about it.

It's very wierd to have never meet another Celiac, it will happen eventually, I'll keep trying. I always run into people that have family or freinds that are Celiac? Close but never a real live one... It's such a inconsistent disease I feel like even the doctors don't really know how it is, I think there is alot we can learn from each other.

Financialman Newbie
Financialman
Posted

It's not really an inconsistent disease it just that it is not diagnosed very often. When I was diagnosed in November 0f 2009 my gastroenterologist told me he had about 10 minutes of training on auto immune diseases in medical school. After I was diagnosed, I read everything I could get my hands on and the next time I went back to see my doctor, when we got done talking about Celiac disease, he said I knew more than he did. That is what people with Celiac disease are faced with. Most doctors, to cover their rears, will tell their patients that they have IBS or irritable bowel syndrome. That's because they don't know what their patient have and they need to tell the patient something until they can figure it out which they unfortunately they usually don't. Keep trying to find a group and don't give up because of one bad experience. Stay in touch with people on this forum and you will get through this.

  • 2 months later...
MichaelJacksons#1Fan Newbie
MichaelJacksons#1Fan
Posted

Hello Dylan,

I am also from San Diego and was diagnosed about 10 months ago, or about a month after you were diagnosed. I also have never met another Celiac, and because of the small number of support groups I have gone through everything by myself. You are the first person in San Diego that I know has Celiac Disease. I don

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      By MichaelDG · Posted

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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