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Rock Group In Southern California


trustyourguts

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trustyourguts Rookie

Hello,

I have 2 children who have glutern enteropathy. I also have a gluten intolerance. (we will take the cheek swab gene test next year). I need a ROCK group in Southern California so my husband can become educated. He tries to keep them gluten free but he is not didlgent enough. At least once a week they seem to get into his gluten rich food. It is really frustrating. My 2 y/o ds gets into a gluten fit. He becomes extremely hyper and mean. He also becomes impervious to pain. My daughter cannot concentrate in school. I need some type of education for him.

thanks,


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Juliet Newbie

Here's the contact for the person nearest you:

Moreno Valley - Support Group

Contact: Kellee Shearer

Raising Our Celiac Kids (R.O.C.K.) - Moreno Valley Chapter

10034 Snipe Circle

Moreno Valley, CA 92557

Tel: (951) 242-8448

E-mail: Treshearer@aol.com

And for the one closer to LA:

Conejo Valley - Support Group

ROCK'n Conejo Valley

Contact: Melissa Riches

Westlake Village, CA 91361

Tel: (818) 706-0197

E-mail: melissa.riches@sbcglobal.net

Her husband is also on the board of CDF and they are both very involved with Celiac advocacy and education.

Contact either of these people; they will almost certainly be a wealth of information.

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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