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Hello From So.cal.

angieInCA

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angieInCA Apprentice
angieInCA
Posted

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
home-based-mom
Posted
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
quillpenz
Posted

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
angieInCA
Posted
  • Author

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
Phyllis28
Posted

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
quillpenz
Posted

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
Janessa
Posted

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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    • catnapt
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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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