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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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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
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    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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