Just found out I *also* have celiac. I'm so confused.

sweetteadrinker2
sweetteadrinker2 Posts: 1,026 Member
edited November 23 in Social Groups
So I was going through my lab results (yay labcorp portal) to track my tsh levels(long story) and saw that I had tested positive for celiac antibodies (90% sensitivity and 98% specificity test) in 2014 and again in 2016! My doctor never told me, just suggested going gluten free, but without a reason (he said it wasn't really necessary) I didn't see the point in adding it into the requirements of low carb too. Now I know. Hit me with any recipes that are gluten free, what low carb foods to watch out for that might contain gluten, any tips tricks etc. What ingredients do I need to watch for other than the obvious wheat barley and rye? Can I eat out? How do I do that? I feel like I can't eat anything except hwc and coffee, and what I have around that happens to be labeled gluten free. Please help, I'm so confused.

Replies

  • chinatowninchina
    chinatowninchina Posts: 1,279 Member
    There is a total difference between labeling at least in the UK where I live, between Gluten Free items and when they say it is a food that has been processed in a place where they also process items containing gluten, which just means they can't guarantee that there won't be some cross contamination but actually it's unlikely.

    It's not that difficult though. If you are eating unprocessed foods such as meats, eggs, fish, dairy etc etc they do not contain gluten. Same with fruits and vegetables and legumes. Your problems start with processed foods. You will need to check the ingredients carefully as things like sausages, hamburgers etc may well have cereals added. Also any coating for fish or chicken etc. In the UK all allergens such as Gluten have to be stated in bold in the ingredients list so it's fairly simple as long as you remember to check.

    When you are out then you just need to explain to the wait staff that you can't eat Gluten and ask them to check with the kitchen what you can eat. Generally avoid sauces on meats etc as often they have added flour. Remember corn flour is ok to use and most people can also eat oats. Rice is also fine as is rice flour.

    A lot will depend upon you just being vigilant at first and then it will be second nature to check and you will learn where you can and can't eat out as you will find out where they have staff and chefs who know their foods and I'm guessing their food will be better anyhow!

    My 6 year old grand daughter is G/F and we have little or no problems eating out with her as we just get people to check labels where they seem uncertain, or we don't go back.

    Its worth remembering to check things like candies and chocolate as well as a number of these do contain gluten so it's not just the obvious things like bread and cakes.

    It's also worth keeping your butter etc separate from the rest of the family's as they will no doubt be spreading butter onto their toast and you don't want to be getting their breadcrumbs on your G/F bread!

    Good luck!
  • goatlady6
    goatlady6 Posts: 37 Member
    Welcome to the crazy ride of Celiac! I found out 7 years ago January and while my gut is not healed yet (or at least not acting like it is) my body as a whole feels better. There are some great forums and information over at Celiac.com. that is where I headed first. Once you get used to it, it really isnt that bad. One thing that surprised me is that I had to bring my own shampoo to the hair place! The one she was using had wheat in it and I was always getting bad after a haircut. (check out all products that you eat or put on your body!)
    When I decided to do Keto it wasnt too hard because I wasnt eating a whole lot of those things anyhow! There you go--it's a 2 for 1 deal.
    If you go out Mexican food is usually pretty safe. Watch the rice though and if you are super sensitive, make sure they have a dedicated fryer for the chips! Chinese...dont get to go any more for the delicious buffet :( but you can order off the menu, bring your own soy sauce, Kikkoman contains wheat!
    HTH a little bit--you arent alone! TerriO
  • nvmomketo
    nvmomketo Posts: 12,019 Member
    :( Oh dear. Your doctor deserves a smack upside the head! He knew 3 years ago that you were a celiac and didn't tell you? That's pretty disturbing. If you stay with him, I would make sure you get lab result copies every time and become a medical google ninja.

    You can find some good food lists online. I'm afraid I don't have mine anymore because a few years ago in Canada they created a new food labeling law that must state if a food has gluten or wheat, or was made in a facility that processes those foods so it may be cross contaminated. Since then, reading labels up here got pretty easy. I'm lucky.

    He's an okay list:
    https://www.healthline.com/health/allergies/gluten-food-list#foods-to-eat

    Eating GF while LCHF is easier than if you ate higher carb. You can get rice noodles or GF bread, but as a low carber you are probably limiting those foods anyways.

    Deep fried foods are something to be careful of. If a breaded food was fried before your food, but in the same oil, it is "glutened" and should be avoided by celiacs. My kids loved fries but unless the restaurant has a dedicated GF fryer, we can't eat them.

    Condiments are tricky. Boullion often has gluten. So does soy sauce, worchestershire sauce and many BBQ sauces. Plus you have to be sure that GF condiments are not cross contaminated - if the butter, jam, peanut butter, relish or mustard had a crumby knife dipped into it, that condiment is now cross contaminated and off limits... I actually travel with my own condiments on vacation, and often when visiting people. LOL It's a bit odd but gluten affects me for weeks and is not worth the risk.

    I have no special recipes for everyday cooking. I'll use GF substitutes for my family but I skip it. I'll have spaghetti squash with meat sauce instead of rice noodles, no bun for my burger (filler is flaxmeal since many celiacs cannot handle oats) and no croutons in a salad (and not just picked out).

    When it comes to baking, I used the more complex starch and flour blends at first (I was not low carb) but it still was not the same. Now I just embrace the denser, low carb coconut flour with flaxmeal, chia, protein powder and hemp as my flour mix... There is almost more egg than flour. ;) Paleo baking is really good for this.

    It took me about 3 months to get used to eating GF, and morning the loss of some foods I loved, before it became easy. Now reading labels and staying GF is second nature - I think I was last glutened 2 years ago. :)

    I rarely eat out. Maybe 3 times a year. I have been "glutened" too many times from the GF menus. I think I got sick about 1/3 of the time. Most people don't get what GF really is. It is a bit better now but I have had people tell me the whole wheat was fine, or a breaded food was safe because there was no sugar, or a salad come with croutons, or that Rice Krispie squares are safe because it's rice and there's no wheat (barley), and the same goes for beer.... GF beer is not as good, as AVOID Daura "barley removed" beer. Not safe. I have even been sick from a steak and glazed veggies and I still have no idea how that was contaminated. I've had people tell me there was no gluten because it was boiled and killed (???) and that hand sanitizer will kill it (WTH?).

    To me, eating out is a risk. It can be done at some places you know are safer, or that "get it", but fast food is a big risk as is trying out a restaurant without doing some research (or calling them first). I'm not good news here... on the bright side, I have saved us a lot of money. ;)

    Also, you may want to get rid of your toaster, and wooden or plastic utensils and cutting boards that are grooved so you cannot get them perfectly clean. The same goes for pitted pans.

    Check your prescriptions and supplements too; most use cornstarch but some are not GF. Also toothpaste, soap, lotion and hair products may need to be checked. Supposedly gluten cannot enter through the skin, but I do tend to get lotion and shampoo in my mouth once in a while.

    Hang in there. I know it is overwhelming at first but it really does get easy after a time. I hope you feel some health improvements soon. :)
  • nvmomketo
    nvmomketo Posts: 12,019 Member
    After that book I wrote (sorry), I still forgot to ditto celiac.com. That was a great group. And Gluten Dude. Here is a post of his on why oats (like in cheerios) are not often safe even if you are a celiac who can handle oats:
    https://glutendude.com/gluten/are-gluten-free-cheerios-safe-for-celiacs/
  • kpk54
    kpk54 Posts: 4,474 Member
    Forgive me. I'm a bit slow sometimes. How is it you just found out you are celiac? Because you read it today on a 2014 report? Or were you having some issues so went to a doc recently? Or is it that people can have these celiac antibodies for years but never have reactions?
  • GaleHawkins
    GaleHawkins Posts: 8,159 Member
    @sweetteadrinker2 you drive home the point If its to be it's up to Me. To healthcare providers we are 1 of hundreds. To us we are One of One.

    Due to my fast failing health and being 63 I finally left all added sugars and all forms of all grains October 2014. LCHF is addressing my 40 years of high pain and declining health.

    I just read Undoctored by Dr. William Davis who talks about how to patients must do as you have started doing.

    Best of continued success.
  • kpk54
    kpk54 Posts: 4,474 Member
    I'll certainly concur we need to be our own advocate. When the thread about a colonoscopy came up the other day I went back and looked at my very short medical file. Nothing in it jumped out at me that hadn't been addressed by the doc but there is no doubt I am just 1 of who knows how many patients on a given day. At least from reading in this forum for so long I have learned a bit about interpreting some of what might be on the reports. Sensitivity to gluten is not something I have ever been tested for that I know of. I would think the testing would occur if I'd had some sort of health issue generally related to celiac or sensitivities. Or is it now considered standard in testing say at an annual physical?
  • goatlady6
    goatlady6 Posts: 37 Member
    KPK--it is not a standard test! The way that I found out is that there was a physician's assistant that had just read an article (this was 7 years ago) and with my symptoms and history she "just had a feeling" and ordered the test. Changed my life for sure!
    As to your comment about the antibodies hanging around in your body and you not knowing it...they say that something triggers those rascals to start causing problems. In my case, I had suffered a bout of Leptospirosis in November that triggered mine. It took a lot of doctor visits to stumble upon the diagnosis for sure but I wasnt giving up. At not 50 years old I felt like I was 90 with all the joint pain...now I have none and for that I am grateful!
    TerriO
  • kpk54
    kpk54 Posts: 4,474 Member
    So you've been gluten free all these years since you were tipped off in 2014 or 2016 or 7 years ago or whatever it was? I think I must have understood your original post. @goatlady6.
  • sweetteadrinker2
    sweetteadrinker2 Posts: 1,026 Member
    I just found out by reading a report from 2014. My doctor is great in all other respects, but neglects reviewing lab results WITH me, instead of before I come.

    Thank you all for the suggestions and tips. I'm not sure if the U.S. has laws about labeling like the UK and Canada, but I'm good at reading labels.

    @goatlady6 I love your user name!
  • nvmomketo
    nvmomketo Posts: 12,019 Member
    Forgive me. I'm a bit slow sometimes. How is it you just found out you are celiac? Because you read it today on a 2014 report? Or were you having some issues so went to a doc recently? Or is it that people can have these celiac antibodies for years but never have reactions?

    This happened to me with hypothyroidism. When I got a copy of my records, I discovered that my TSH was high (4-7) back in '97 and no one told me. It finally got high enough for me to be told (in the teens) about 15 years later... I so want to smack that old doctor. LOL

    Antibodies can hang out for decades and one won't know they have celiac disease. The most common symptom of CD is anemia - not something you associate with a PBJ sandwich.

    Plus antibodies stay elevated for quite a while after going GF. I finally had negative antibodies at close to a year GF.
  • goatlady6
    goatlady6 Posts: 37 Member
    KPK I think you may have mixed up the OP's post and mine (goatlady6) No matter--I think we are all straight now! Thanks for the thoughts on my user name. I have had it for 30 years! It all started with my hay guy differentiating his customers. I had goats, others had horses or cows! Now I have only 1 goat but the name still sticks!
  • canadjineh
    canadjineh Posts: 5,396 Member
    @sweetteadrinker2 I post info from the latest studies on celiac disease and NCGS here: community.myfitnesspal.com/en/discussion/10104290/medscape-medical-professionals-continuing-ed-site-celiac-disease-gluten-sensitivity-articles#latest You may find extra info - to hit your freakin' doc over the head with!! and to understand your situation. I second nvmomketo's point about cosmetics and skin lotions and shampoos/conditioners. Just think about how a medication patch delivers meds to your system.... want gluten delivered to your overly sensitive system via skin? NO WAY!!
    Also if you travel a lot you can download a card in multiple languages that explains your situation. I've used it a few times myself and even in Mexico a restaurant owner got special masa for me that did not have ANY flour near it and use a special griddle for my tortillas (even though they made all the tortillas fresh to order, the regular masa was not pure, mixed with a teeny bit of wheat flour to make them easier to handle.) No extra charges, and no huffing and puffing about the 'bother' either. Here's the card site: celiactravel.com/cards/
  • goatlady6
    goatlady6 Posts: 37 Member
    Thanks for that information! I am headed on a cruise in March and I am terrified of being sick the whole time! I will check out those sites.
  • tcunbeliever
    tcunbeliever Posts: 8,219 Member
    In the USA a food labeled "gluten free" has to have less than 20ppm gluten, so gluten free does not actually mean there is no gluten, and some gluten free foods still give me migraines, so depending on the level of sensitivity you may or may not be ok with individual items.

    I just mostly avoid anything that has a wheat allergy warning.

    Favorite gluten-free foods:
    Udi's bread/muffins
    Tinkyada pasta (brown rice)
    almond flour (for making cheesecake crust - sometimes cookies)
    Tate's makes amazing ginger zinger cookies that are gluten free
    Horizon make a boxed mac & cheese that is gluten free and delicious


    Annie's makes gluten free stuff, but generally gives me a migraine, so not sure how truly gluten-free their stuff is. However, MSG also triggers migraines for me, so it might not be gluten in their products, it could be MSG.

    For drinks, wine is a good option, most hard ciders and lemonades are safe bets. Omission Lager is yum and great for any recipes that call for beer. Pampered Chef makes a gluten-free beer bread recipe that is great for this, and also tastes pretty amazing with a strong tasting hard cider like Angry Orchard - comes out kind of like an apple bread.

    Eating out is not too bad, most places will make sandwiches without the bread or without the bun...salads are always a good option...be careful of soy sauce and other sauces that have wheat as a filler...most chains have a gluten-free menu these days, even Olive Garden and Noodles & Company have tasty gluten-free pastas (and those don't trigger a migraine for me even though both companies will warn you that there is potential cross-contamination in their items)...probiotics are supposed to help clear gluten from your system, so maybe a daily yogurt/kefir/sauerkraut/kombucha or your favorite fermented food would help as you transition and try to clear yourself of gluten.
  • goatlady6
    goatlady6 Posts: 37 Member
    Ah Noodles and Co. ! One of my fave places to go for safe food!
  • anglyn1
    anglyn1 Posts: 1,802 Member
    I've been gluten free for 8 years! Long before I was low carb. Places I feel safe dining out are Chili's, they have a gluten free menu and my location seems to understand cross contamination. Buffalo Wild Wings, my location has a dedicated fryer meaning they don't fry the breaded and unbreaded together, but not all do so you have to ask! Five Guys is GREAT. They are very careful with cross contamination. Almost everything at Qdoba is gluten free aside from the tortillas and the bbq sauce. I get burrito bowls. Chipotle is too but I don't have one nearby. Outback, Olive Garden, Ruby Tuesday, and most chains now have a gf menu. Fast food bunless burgers. My local Mexican places are accommodating.

    Basically it's gotten a ton easier over the years with more and more places offering gluten free options.

    Things to watch are soy sauce, even when you aren't at an Asian style restaurant they might marinade chicken with it. Soups that seem safe like broccoli cheese often are not. They might use flour to thicken it. Au jus that is served with prime rib usually has gluten in it. IHOP puts pancake batter in their omelets so that's a problem.
  • canadjineh
    canadjineh Posts: 5,396 Member
    @tcunbeliever be careful about the lemonades! Mike's Hard Lemonade does have gluten and some mixed drinks can have gluten in the flavouring mix too, even if the alcohol in them is safe.
  • canadjineh
    canadjineh Posts: 5,396 Member
    goatlady6 wrote: »
    Thanks for that information! I am headed on a cruise in March and I am terrified of being sick the whole time! I will check out those sites.

    I just came back from a cruise and Royal Caribbean was really good - I got to choose my dishes the night before (so that they could prepare things before they get contaminated with other meal prep at dinner) and I asked for things that were not even on the menu with no problem. About 30% of the foods were naturally GF at dinner anyhow including at least a couple desserts like creme brulee.
    BTW if you are ever in Vegas and want to take advantage of the Bacchanal Buffet at Caesars Palace, you can get a dedicated chef as guide to the buffet items and they will make whatever you want fresh to order like Wagyu beef 'sliders' on butter lettuce cups, etc. They were awesome there and very knowledgeable as far as possible cross contamination and getting safe similar foods to you at no extra charge. I had no problem whatsoever eating there.
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