Newly diagnosed with celiac. Any tips?

Type 1 and LADA
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Hello everyone.

I’ve been a type 1 diabetic since 2009. I recently underwent a celiac serology screen that came back positive. This led to an EGD with biopsy which confirmed a diagnosis with celiac. I do not have any any intestinal issues although I do suffer from chronic deficiencies.

This is a bit shocking and I don’t know what to make of it. I will be meeting with a specialized dietitian soon but I’d like to get a head start on things.

Of course I am advised to follow a gluten free diet. To be honest I am not eager to start a gluten free diet since I don’t have any symptoms to seek relief for. I don’t know where to begin. Also, the concept of cross contact seems like overkill and I can’t imagine how one can adhere to it.

This seems like a complete overhaul of my diet and that surely can’t be good for my glucose control. From what I’ve read so far most readymade gluten free products have a high glycemic index.

Any tips/ past experiences appreciated. Especially regarding glucose control with a gluten free diet.

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Hi: My dear Mom passed away last June. Bless her heart she lived with Celiac for many many years. Her blood tests to check to see if she was consuming gluten, were immaculate. She did everything right.
There are many things to watch for including cross contaminated foods cooked in restaurants etc. Like don’t get croutons on a salad, etc. Or “was this dish cooked next to bread crumbs?” It’s a lot, but you can do it. You may have to adjust for gluten free carbs but a carb is a carb. so don’t worry.
Celiac.com is my go to source, or was anyway when I was cooking for her. They have wonderful resources. Forums too. Lists of do and don’t foods lists, you name it they have it.
The grocery stores are carrying so many GF products nowadays. you may have to search your local stores but you should find things easily. Mail order companies I believe are on the web site.
Make this an adventure. Just know that you may be treated like you are doing this as a fad type diet. If you are diagnosed, this is serious. You don’t choose to do this, you have to. Mom had to advocate for herself because when she was, for instance, sent to a skilled nursing facility, they actually had people tell her it was a fad. Even at her age she had to educate them! Learn all you can, don’t be afraid but be very prepared to advocate for yourself.
I’m so very proud of my Mom who fought such a fight for herself for so many years. She even went to Washington to lobby for the cause. She was treasurer for a local Celiac group and they had a lot of fun. You may want to find that kind of support. And if you like to read, you can grab some books or cookbooks on the GF topic.
Please feel free to ask if you need anything.

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I don’t have celiac, but have done every elimination diet known to mankind trying to figure out a mystery source of inflammation no doctor can diagnose. About to start a new one next shopping trip, which I have high hopes for because it’s so different from previous ones. I’ve gone gluten-free at least a dozen times now. Yeah, it’s probably going to be a big adjustment. Especially when the dietician tells you to throw away just about everything in your kitchen and replace all your bowls and kitchen equipment because of contamination. (Seriously, who does that???). But the good news is that this is probably one of the easiest food sensitivities to have because of the sheer volume of support, certified gluten-free foods, recipes, blogs, Facebook and other support groups, etc…

I’m already an everything from scratch homesteader, so it was never a big deal for me to just find new recipes. Eating at home is going to be not just safest, but also offer the most variety. If you tend to eat out a lot, though, it’s going to be harder. Every restaurant has a gluten-free menu, but it only applies to the actual ingredients and doesn’t account for cross-contamination. You’ll be relegated to griddled/sauteed proteins (pans and the flattop are the easiest things to clean) with just salt&pepper with certain veg for sides, because pretty much every every seasoning blend and sauce will have gluten, and the deep fryers are literally deadly to you.

Sure, gluten -free REPLACEMENTS for wheat foods are going to be slightly higher glycemic index because they tend to have a higher starch content than wheat flour to mimic it’s fluffiness. The reality is that you’re talking about swapping already high glycemic index foods for slightly higher glycemic index foods. It’s really not that drastic of a difference. If you’re looking to include these types of foods, there’s a website called Gluten Free On A Shoestring which has some of my absolute favorite recipes. They’re really good! She’s also got a lot of excellent cookbooks, which are usually available at the library if you want to try before you buy. And if you’re a pizza fan, there’s one called No Gluten, Problem - Pizza, written by a family that owns a pizzaria, and it’s hand-me-down the best!

It’s also really easy to just not eat those fluffy, wheaty types of baked goods and pasta, though, and focus on eating real non-processed foods instead. So long as you take it easy on the fruit, that pretty much guarantees low glycemic index and is ideal for diabetics following the traditional recommended diet! Just about everything in the outer aisles of the grocery store, except the bakery, is going to be gluten free: produce, meat, eggs, a lot of the deli (the attendants will know what’s gluten-free because of the hundreds of people before you who’ve asked), dairy&cheese (beware of the pre-shredded!), etc…

As far as making the change affordable: I’m not normally a Walmart shopper (supporting small businesses is just the Colorado way and Walmart is a dirty word here), but they’ve got the absolute best gluten-free assortment of any grocery store I’ve been in. There’s usually an entire aisle dedicated to it. Also, Amazon with subscribe & save discounts and Vitacost have been my best affordable online retailers. If you’re a Sam’s Club member, don’t trust their supposed gluten-free category in the app. It’s a mess of lies. You have to read the labels.

Speaking of reading labels… There’s an app called FIG (short for Food Is Good) that will read the labels for you and highlight hidden sources of gluten (or any other food sensitivity you program it for), of which there are many. It’s really a lifesaver when you’re making the transition. There is a limited free version which allows you unlimited searches, but does not allow you to filter by grocery store or scan bar codes (you get 5 free scans, but they go really fast). I despise subscription model app pricing, but this is the ONE that I do pay for. It’s like $40/year and so worth it to me. I’m getting ready to start a diet for Histamine Intolerance, which excludes a mile long list of specific foods, but not entire general food categories (tomatoes and hot peppers are bad, but other nightshades and sweet peppers are fine; certain food additives are fine but others are not, most grains are fine but the germ part of them is not, no citric acid or folate, anything fermented is forbidden, etc…). All I’ve got to do is tell FIG I’m histamine intolerant now and it just KNOWS all the forbidden things. It’s really nice to be able to just search for what’s in the cereal aisle at Kroger I can eat, instead of searching by specific name/brand.

And the big thing nobody will warn you about is negotiating with the rest of your household. It’s seriously easiest if you live alone, but not many people do. Do you have the willpower to avoid gluten others bring into your home or is the entire home forced/willing to go gluten-free with you? If not, are you prepared to have your plates/pans/pantry and their plates/pans/pantry? Cooking separate meals? Are they supportive enough to go on this journey with you? It can really challenge a relationship when food is soooooo integral to life! You’re going to need a support network if it’s not in your home.

Good luck with the shift! Just remember that it usually takes 4-6 weeks to change a habit. So it’s a relatively short time of truly sucking before you get a good grip on things and it just becomes the new normal.

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I don’t have celiac but I do have non-celiac gluten intolerance and have been gluten free since diagnosed back in 2013. I have to admit that going gluten free did make a big difference in things I hadn’t noted before as problems. First of all, I lost 15 pounds almost immediately - weight maintained due to inflammation - and have had no problems pretty well keeping it off.

Commercially provided gluten free foods tend to be carb rich and full of a lot of chemicals and preservatives. Rice flour is the common substitute for wheat (often in a blend) so there is a very high glycemic index response to a lot of rice based breads or pastas which is problematic for those of us with diabetes… There are flours made from a variety of gluten free foods like beans and soy and mushrooms and lentils that are lower carb, higher fiber and once you get used to differences in texture, etc. are pretty good substitutes., etc. Start reading labels for content and avoid anything that has wheat or any of the other disguises for wheat. Then look at the carb count and make sure it is reasonable and the product has a lot of fiber because that will help to slow down any glycemic index.

I have found that avoiding most processed foods is the easiest way to go. I eat a lot of wholesome, whole foods, vegetables and fruit and meat that are minimally processed and then cook, bake, roast, whatever, on my own. The only time I miss wheat is when I am smelling fresh home-made wheat bread and omg - if I could eat the smell, I would, lol!.

It is easiest to bring your family into the gluten-free diet as well as with celiac you need to be a lot more careful not to overlap with wheat containing foods. Even something like sharing toast in a toaster can contaminate you and when you do remove gluten from your diet and then get exposed to it, you will feel when you have been ‘glutenized’.

It is easier today to be gluten-free than when I started. You don’t need to feel like you are depriving yourself of anything because really, you are not. Once your gut heals form the inflammation, you will be surprised how much better you do feel, even if you don’t think you have any symptoms right now. They can be subtle and you will recognize what they were when you aren’t getting glutenized anymore.

Good luck and try to have fun with this. It isn’t that difficult but just requires a change of attitude. Your biggest problem might be dealing with people who will tell you ‘it is all a fake’ even when you do have a condition like celiac.

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So sorry to hear about your mom passing. What a force she was! It must’ve take a lot of courage especially back in the day when gluten was as foreign as it was.

“A carb is a carb”. That is what I needed to hear. Really. To be honest for now I take diabetes way more seriously than celiac because I experience all that it does to my body. As for celiac I’m pretty much asymptomatic which makes it even harder to adhere to GFD. Don’t get me wrong I do feel immensely blessed for not experiencing horrid GI symptoms and bloating. But it doesn’t give me reason to stay off gluten. I’m a glutton for gluten, you could say…

Appreciate the tips. I’ll be sure to look into The website and look for local support groups as well.

Again. thanks so much!

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First I must say, what amazing willpower you must possess to have gone through this “or incredibly awful symptoms and I’m sorry for that”. I truly admire that and I wish to be the same.

You are correct in gluten being well supported. In my country we have a monthly allowance for celiacs of basic food rations (flour, bread, biscuits,…) which is truly incredible. And to top it off monetary stipends. For that I’m lucky.

But I do appreciate you acknowledging that it’s gonna be a difficult transition to begin with! Honestly I just need to commiserate for a bit because everyone around me is very supportive and they try to lighten the mood by saying things like you’ll get it in no time and such. But sometimes you just want to whine for a bit over what you’ll miss. I admit I’ve been on a gluten binge ever since I had the serology results.

I agree with you in that it might be more satisfying to eat naturally gluten free items than face the disappointment of certified gluten free replacements that will never live up to it (I’m looking at you, bread).

As for my living situation, I live with my husband and toddler. My husband is incredibly supportive and right off the bat, offered to go gluten free to make things easier. But my daughter I’m not too keen about limiting her options just for my benefit. Sure she can eat out. But I’d have to think twice before instituting this all gluten free transition and how it affects her. My philosophy with her meal planning is I want her to have a well rounded albeit healthy palette.

I like timelines and I’ll be sure to keep that in mind when starting. Hopefully treating it as a new challenge will make it exciting enough for me to weather those days.

Thanks so much for your input Robyn! It is extremely helpful.

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Actually I’m really looking forward to what a gluten free diet will do to my body. I could stand to lose a bit of weight. And like you said, symptoms may not be noticed until they’re gone. I tend to ignore/tolerate symptoms if they’re milder and maybe I just overlooked them. This happened to me with various issues (diabetes, ruptured ectopic, thyroid).

Though I’m not too keen on the possibility of being extra sensitive to gluten after I’ve gone off of it. What a blessing it is to have no GI symptoms. Is it possible I’m making myself more sensitive to it by stopping gluten? That terrifies me.

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It would not hurt for your daughter to eat gluten free foods and get used to picking them as an alternative. Celiac disease runs in families and a lot of people don’t find out until they are showing signs of a problem. Not having healthy intestinal villa is what can cause deficiencies. So I know it’s hard, but you need to follow it. Chin up, there are a ton of alternatives nowadays.

But a lot of alternatives use rice or rice flour. I do not have a problem with gluten, but I do have a hard time with dosing for rice, especially white rice. I am not the only one, for some reason rice is harder to dose for some of us. Not everyone, just some of us. I have gotten better, but I also find gluten free products with rice flour are harder to dose for me too.

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I found I became more sensitive to gluten after going gluten free - which is actually a good thing because it helps keep me ‘honest’ :-). The only real problem is when you are eating out and someone says something is ‘gluten free’ or you assume it is gluten free because it really should be but someone has put wheat into it somewhere. The biggest offender is scrambled eggs at restaurants. Most of them don’t use fresh eggs but use powdered eggs and reconstitute them. Many of the powdered egg mixes do have wheat added into the mix so you are safer going with a fried egg rather than a scrambled for breakfast out.

Surprisingly, one of the ‘symptoms’ I didn’t recognize until afterwards were a number of different cravings. Once I stopped eating gluten I no longer felt any cravings for anything. I stopped feeling hungry and and was able to enjoy my food without feeling I had to eat quickly to satisfy hunger. I also stopped getting bloated and having digestive problems afterwards. It was so nice to feel better when I hadn’t even realized I wasn’t feeling the best I could :-). There are some great gluten-free cookbooks out there and some excellent commercial gluten free breads. I’ve also been able to convert some of my family’s holiday baked goods into a gluten free version that loses nothing in the translation, so once you start feeling comfortable being gluten free you will find that there is still a lot of variety and opportunities to experiment with good tasting foods you might never have considered before :-).

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Mom had a very rapid strange dementia the last six months. But I’ll tell you, she stuck to her diet and she lectured the hospital and the two nursing facilities she was in for several weeks. They didn’t all get it, but boy she tried hard! She was amazing. I wish you well on your new path.

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I think of Celiac’s as being kinda like being vegan. You cook everything yourself. I don’t know how else you get by. Maybe consider dropping down on extracurricular activities & responsibilities to make time for this. I think this is a really tough one. Cooking, while good for you, takes time, skill and effort.

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Sorry for my highly US-centric post! I didn’t stop to consider that you might have very different stores available wherever you live. Your country sounds pretty awesome to help with specialty food, though!

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Hi there, I have been Type 1 for 44 years, and my Celiac diagnosis came 10 years ago. Along with those, I have RA, and when I get glutened, my joints go into a tailspin, so that is my first clue that I’ve been exposed. Cross contamination is a real issue, but one that many Celiac patients are unaware of if they don’t have acute symptoms like I have. But the fact is, each time you expose your gut to gluten, damage is happening. That is something one may be tempted to ignore, except Celiac patients have a much higher occurrence of colon cancer and lymphoma, just for starters.

I’m sorry to say that given my symptoms, the only way I personally could stop the cross contaminations was to stop eating out. I don’t even eat food made by my family cause their kitchens aren’t gluten free and I end up paying for it every time, despite their best intentions. My husband was also kind enough to go gluten free. BUT we don’t eat “gluten free” foods. We just eat foods that are naturally without, like meat, lots of veggies, fruits, etc. Basically a paleo diet. There are no nutrients in grains that cannot be found (in greater abundance, typically) elsewhere. “Gluten free” products for the most part, are still mostly junk foods. Feel free to IM me if you would like more info on how we eat!

If your symptoms are less dire than mine, you may be ok with eating out from a gluten free menu. You will find though, that the longer you are gluten free, when you do get exposed, your symptoms will become more obvious and your reactions stronger than before. That has certainly been the case for me.

Best of luck to you!

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Late to the game but I wanted to give my two cents. I was diagnosed with Celiac 25 years ago with the help of my Endo. This was just as the GF diet was starting to take off. Like you I was asymptomatic but over the years as I have been GF I really get symptoms within a couple of hours when I am “glutenized” as I call it. My stomach starts to become uncomfortable and churning. I get horrible gas and very loose stools and become a weapon of mass destruction. I find that certain GF brands and items cause me problems and I stay away from them. For example, GF Oats do not agree with me.

I like the app and website “Find Me GF” to find and rate GF restaurants and the “GF Scanner” app works great in the grocery store to see if an item is GF or not. Kroger and their other named stores “King Soopers, Bakers” have a little GF on the price tag of items that are GF. Aldi has a good selection of GF items as well.

Rice and potato and Corn Chips are great! I eat Lays Potato Chips and Frito and Dorito Corn Chips are my favorite. Cream of Rice is a good cereal. I’ll try just about anything once and decide if it works for me or not.

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I was diagnosed with celiac in 2009 (T1 in 1955) and agree that concentrating on that produce aisle and mostly avoiding prepared foods is both easiest and it also will likely keep you healthiest. My Italian-American husband cooks and eats pasta made with wheat regularly, and we manage that by being careful not to contaminate anything I’m going to eat, uses his own pasta pot, even. There are some rice and other GF pastas that aren’t so bad, but I love spaghetti squash and also have a zoodler for zucchini, so that’s what I usually put my portion of our joint sauce on. But, otherwise, we don’t really eat many prepared foods. Used to eat out more, got out of the habit during the pandemic. But yesterday, we ate at a local Salvadoran restaurant that I trust: I had lorocco papusas, topped with the slaw and sauce, with no problem at all (even bolus worked! Not a sure thing even with something I’ve eaten before, because the size can vary when a restaurant makes their own, and that’s pretty high carb). When we eat out, it is usually Latin or Indian, which use less wheat, but still have to be careful, so usually keep to ones we know. I know the 2 curries I can eat at the local Thai (can also eat their Pad Thai, except for never getting the bolus right, though every once in a while (yearly?) I still try. The main place I miss the square wave bolus.) There is one Chinese restaurant, now pretty far and also too expensive to go often, that I have done well by using their non-Americanized menu where I have more control of sauces.

And, my husband goes out with other people enough that he gets enough pizza and other cuisines that I find too hard, like those French roux.

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Not at all! It’s experience that I was looking after wherever it may be. And for sure someone will come along from the US looking for your detailed recommendation!

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I’m not celiac but three generations of us are allergic to wheat and most grasses, artificial sweeteners, artificial food colors, animal products that have been fed antibiotics, another allergy. The answer for me is to be nearly vegan and nearly grain-free. Ground corn products don’t seem to bother me, the only exception. I have a pump and CGM, so the feedback is fairly quick if I’ve eaten something suspect. BG spikes up. After that, skin rashes, what looks like psoriasis on my hands, digestive difficulties, inflammation in general. Not pretty. But once the fridge and freezer is stocked correctly, it’s not difficult to maintain. Beans, legumes, lentils, tofu, nuts, fruits and veggies. Almond milk, coconut oil. Organic unsweetened peanut butter and fruit spread on Base Culture toasted bread!

My husband keeps foods he likes and that I can’t have on his own cabinet and refrigerator shelves. Watching my young granddaughter sitting next to her dad in a restaurant is adorable. Dad can’t have onions, she can’t have the same things I can’t have. Food arrives, she does quick edit of both plates. She’s been doing that since she was four.

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Thanks so much Sara for relaying your experience as such. Eating naturally gluten free foods seems like the most sane advice I’ve received. I hope you don’t mind me getting in touch once I start the diet because that’s probably when I most likely to have all those questions.

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I’m relieved to see others like me who were asymptomatic. I was keen to find out if they felt cheated once they started the diet because then and only then do they get symptoms at alert. Thank you for the recommendations. I hope those apps work in my area.

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It kind of saddens me to hear that most celiacs avoid eating out. Especially when I know so much of our culture and interactions are centered around it. I really appreciate Japanese cuisine and I heard people bring along their own tamari sauce with them to avoid gluten. I guess having a few tricks up my sleeve doesn’t hurt.

I like Indian food too. I suppose it can be a safer alternative considering so much of it is centered around rice.

Thank you!