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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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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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