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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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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
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