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jessga

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jessga Newbie

I have recently found out that I have celiac disease. My doctor recommended that I learn more about it and suggested that I begin my gluten free diet. I still have to see a specialist this coming Tuesday. If I tested positive what more could he tell me about this? Is there something else I should be concerned about? I am struggling with this since I am not consistant with diets and that sort of thing. Is this it? Is this a new life style I must abide to? I feel like I'm in denial since I never really lost weight. On the contrary I have gained weight this past week or is it different for everyone? Someone please help. I already know the facts but living it is something different.


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GFinDC Veteran

Your specialist will probably tell you about foods to avoid and so forth. Also might want to tell you about vitamin deficiencies that celiacs often have. Or suggest coming back for checkups on your progress every 6 months or so. I have been taking B vitamins and Vitamin D every day but my doc just told me I am Vitamin D deficient after a year. There are lots of things to learn, like where to buy gluten-free beer and important things like that. :lol:

GlutenWrangler Contributor

This is going to be a lifestyle change for you that will last the rest of your life. You must be consistent with the gluten-free diet. Regardless to what your symptoms were prior to your diagnosis, if you continue to ingest gluten, you are setting yourself up for serious health problems. Celiacs have a much higher risk of intestinal cancer, which is greatly reduced by the gluten-free diet. You also risk further damage to your intestine, vitamin deficiencies, bone loss, malabsorption, and neurological problems, among other things. Cutting gluten out is step one. You also have to be wary of hidden gluten, which can be found in many unsuspecting products. It is best to have your own utensils and cookware that have not been in contact with gluten. If you take medications, you must check the ingredients to make sure it is gluten-free. Many members have "newbie kits" that would be able to help you along. Hopefully one of those members will post one for you. I would recommend doing as much reading as you can on this site, as it is the best resource on the internet for Celiacs. It should help you along with making this transition. It might seem daunting, but eventually you'll catch on, and it will be second nature for you. Good luck,

-Brian

Hummingbird4 Explorer

Hi Jessga--

Like you, I did not have the "classic" weight loss associated with Celiac disease. I'm about 15 lbs. overweight. I've since learned that different people have different symptoms, and that's one reason why so many cases go undiagnosed. Like you, I was surprised by my diagnosis (and angry, and sad, and in denial). My advice is to read all you can. Spend hours on this forum and others like it. Buy some books and read them. Soak up all the information you can.

I made myself a couple of notebooks: I took a binder and divided it into sections, and started collecting recipes, most printed off the internet. (I also have recipes in the gluten-free books I bought. There are lots of recipes out there!) The other binder I use to carry lists of gluten-free products from grocery stores like Trader Joe's, New Seasons, and Whole Foods. I placed the sheets into plastic pages. I also have menus from local restaurants in there. My notebooks are a work in progress, and I'm always adding to them.

Another thing I did that really helped was to purge my kitchen of anything that might cross-contaminate me. I cleaned out my pantry and my refrigerator. I boxed up any kitchen items that might harbor gluten particles. I took the opportunity to wipe down all my shelves, the cabinet doors, drawers, etc. It was a big job but I'm so glad I did it. (Buy yourself a new toaster - yours likely contains zillions of gluteny crumbs!) From that point, I buy only gluten-free foods. My family is on-board with this, otherwise it wouldn't work. I'm grateful for their support, because I really feel safe eating in my own home.

Best of luck getting up to speed. Before you know it, you'll be a pro.

ShayFL Enthusiast

I recommend that you look for a local Celiac support group. Mine is great!! About 12 people or so show up every two months. We discuss all sorts of things and the "old pros" guide us newbies. Which restaurants are safe, where to get certain foods. The leader brings samples of foods she gets from manufacturers. It is really a great thing and you can make friends who are Celiac too!! Someone you can go to their house and eat safely. I made one so far who is a little older than me, but very nice. She joined my book group so I see her every month at least. I bring gluten-free goodies to our coffee/book group get together. :)

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      Unless gluten exposure is happening on a regular basis, it is doubtful that blood antibodies would show up elevated in testing. It takes time for them to build up to detectable levels.
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      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
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      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.
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