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Hello From So.cal.


angieInCA

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angieInCA Apprentice

Hello all!

I am a total newbie to this whole celiac thing. I was diagnosed on Aug. 22nd. Just a little over a week of finally knowing what has been my problem for over 40 years. Sad thing is I became suspicious over 3 years ago and my gastroentologist then said "No Way" but never ran one test.

I've known for years something was not right and have had test after test for allergies and other things but nothing was ever conclusive. Sad thing is if you go down the Celiac check list I had 14 out of what 17 symptoms! And not one Dr. in my entire life ever questioned it. My guess is because the one symptom I didn't have was weight loss. Matter of fact I have always been about 10 to 15 lbs over weight and now I am close to 40 lbs over weight. Strangely enough, after just 1 week of being gluten free I have dropped 10 lbs and feel the best I have felt in years!

I have found all of this very daunting as I'm sure most of you did in the beginning. I've spent countless hours researching. I'm so excited to join a community where I feel I can learn so much.

Just call me

Angie


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home-based-mom Contributor
Hello all!

I am a total newbie to this whole celiac thing. I was diagnosed on Aug. 22nd. Just a little over a week of finally knowing what has been my problem for over 40 years. Sad thing is I became suspicious over 3 years ago and my gastroentologist then said "No Way" but never ran one test.

I've known for years something was not right and have had test after test for allergies and other things but nothing was ever conclusive. Sad thing is if you go down the Celiac check list I had 14 out of what 17 symptoms! And not one Dr. in my entire life ever questioned it. My guess is because the one symptom I didn't have was weight loss. Matter of fact I have always been about 10 to 15 lbs over weight and now I am close to 40 lbs over weight. Strangely enough, after just 1 week of being gluten free I have dropped 10 lbs and feel the best I have felt in years!

I have found all of this very daunting as I'm sure most of you did in the beginning. I've spent countless hours researching. I'm so excited to join a community where I feel I can learn so much.

Just call me

Angie

Welcome, Angie! :)

Unfortunately your story is far too common. You have come to a great place top learn. Read and ask questions to your heart's content! :P

quillpenz Newbie

Dear Angie from California, I suffered this disease as a child, I now realize. There were lots of times as a child when I think I was wheat free because on the farm in NC we alternated between biscuits (wheat) and cornbread and my mom made the pure cornbread without the flour. All I know is that I had the horrific celiac episodes once a month at a minimum as a child and had no idea what was wrong. My symptoms are violent. I think that by the time I was college age, it went into remission and came back in the 1990's when I had a serious family tragedy. In the 1990's I heard about celiac disease on the public radio broadcast, an item from the BBC and something about how the disease was generally in people of Mediteranean dissent. In the late 80's and early nineties they said that if you went wheat free for a year or so, you would be cured and could resume the wheat. That turned out to be false. I began to suspect that celiac was what I had. When I mentioned to my doctor, he said, "Not likely": I am black. He said that black people rarely get the disease. A girlfriend, a white woman, was having trouble and got tested. Turned out she did not have it but she told me that I should look into it. Like you, Angie, I could not get him to test me, so, I experimented, in 1999 and went off wheat. One week later I felt like a million dollars. I have stayed wheat free for nine years except for accidents and mislabelling and the episodes are horrible. I finally got tested this year and it confirmed my own diagnosis. I had a recurrence of symptoms because of a particular item of canned vegetables that I would never suspect had the wheat. I know how you feel. Angie. Are you near a Trader Joe's? They have a great ginger snap cookie. Harris Teeter and Food Lion are labelling shelf areas with large letters, "gluten free" and they jump at me like neon. As a child and young adult, I had trouble gaining weight. I weighed 99 pounds until I was 27 years old. As a child, I was made fun of for being so skinny. When I turned 60 I weighed 112. Luckily I had a big ego and didn't mind. I minded but I didn't let it stop me from being aggressive and happy. Angie, I hate to welcome you to this ailment, but welcome andgood luck. Quillpenz

angieInCA Apprentice

I had only really learned about Celiac about 4 years ago before my Step-Daughter was diagnosed with Crohn's. I was doing research trying to help her when I discovered Celiac. All the sudden all the puzzle pieces started fitting together for me. It was so obvious.

I immediately went to my Dr. and said I think this might be my problem. Was sent to a gastroentologist and of course the answer was no and we don't need to test. For the last 3 years I have seen 6 different Dr.s in this area untill I saw one that would actually listen to me. I'm sure my insurance company thinks I'm a complete hypochondriac.

Thank God I have a Trader Joe's just down the street and we have a great Health Food store very close that had a whole aisle just for Gluten free even though they are a bit on the expensive side. I found some of the same things at Trader Joe's for almost 2 dollars cheaper.

There is a Whole Food's in this area but it's about 20 miles away so trips will have to be planned because here in So. Cal. 20 miles may mean an hour of traffic just to get there.

Phyllis28 Apprentice

Henry's Famers Markets also have a reasonable selection of gluten free foods in Southern CA. Below is the link to their "Find a Store" webpage

Open Original Shared Link

quillpenz Newbie

Wholefoods has oatmeal cookies and chocolate chip!!!!

I cannot find a sandwich bread that I like. It is as heavy as lead. Quillpenz

Janessa Rookie

I am in So Cal too. A lot of stuff you get at whole foods you can also buy in bulk on amazon much cheaper, so once you find something you like you can just order.

We are also getting pizza places that have gluten free pizza (pizzafusion-dot-com)

And Babycakes is opening in LA too (babycakesnyc-dot-com)


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    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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