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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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    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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