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San Diego Celiacs?


Wheat Wacker

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Wheat Wacker Rookie

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

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

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

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

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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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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