Diagnosed Today - Need Help Please!

[samuella]

I was diagnosed today with celiac. Joy. I'm trying to get my head around this. I'm also vegan, so I fear I shall never eat out again! But being vegan also means I'm use to limitations on what I eat, so hopefully that will help in a kind of weird way! I have lots of questions, but these are the ones the pop up now:

1. If I'm sure the ingredients listed on a food don't contain gluten, is it safe to eat if it doesn't say it's gluten-free?

2. What about vague ingredients like 'spices' and 'natural flavours'? Are those to be avoided?

3. If none of the ingredients contain gluten but there is that oh-so common phrase "might contain x, y, z" or "may have been manufactured" with x, y and z, one of which is wheat, do I need to avoid these? (That would seem to mean there is no safe food since so much food says that now!)

4. How do I find out if medications are gluten-free? I'm on domperidone for my milk supply (I'm breastfeeding). I also take various vitamins - I haven't looked yet, but I assume the label should help me figure those out.

I think that's my first batch of questions! Apologies if they are stupid questions!

[jolie.fleur.peu]

I can't give you any advice on adjusting as I was two years old when I was diagnosed but fir what it's worth, good luck

1) Do some research on ingredients which gluten hides under eg. Dextrose.Generally it will say in brackets 'derived from wheat or maize ( the later is safe) but if not and you're unsure, skip it. A lot if gluten-free foods don't have a specific gluten-free label. If the ingredients look safe to me, I go for it. Look it up online if you're worried.

2) They should have numbers following them eg. Thickner 1487 . You can look them up online also. It should say in bold under the ingredients 'contains wheat/gluten'

3) Depends how worried you are about cross-contamination. I sort of judge it on a case-by-case basis. If there was something in the ingredients I was dubius about, I skip it. A lot of companies include those little phrases so they can cover themselves in the unlikely situation someone gets sick and complains

4) Ask your pharmacist or doctor. The best thing to do is to call up each company and ask to talk to someone high up in the company about the specific product.

One thing to remember is 'if in doubt, leave it out' . A bag of chips is not worth your health.

Hope this helps

[etta694]

There are some good articles/lists on the main site. This one has unsafe foods. https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

This is the safe foods list: https://www.celiac.com/celiac-disease/safe-gluten-free-food-list-safe-ingredients-r181/

I do/did a lot of searching on the site for answers.

[Kim69]

Note that glucose derived from wheat is safe to eat. Thank goodness!

[quincy]

Note that glucose derived from wheat is safe to eat. Thank goodness!

I used this site as my second bible once i found out a year ago yesterday. I also google everything "is 'this product' gluten free" and usually many hits from this site come up and you will get your answer. if you have an iPhone or smart phone there are some apps out there as well.

when shopping you can also check for the 'certified gluten free' label which comes from cgf.org. I always feel safer when i see that, but I STILL google the product with the question if it is glutenfree, just in case there are any controversies about it.

[T.H.]

1. If I'm sure the ingredients listed on a food don't contain gluten, is it safe to eat if it doesn't say it's gluten-free?

Honestly, my answer would be 'assume not.' The issue at hand is cross-contamination. As an example of what level of cc can be an issue, I'll give the example of my friend and her celiac 2 year old. She was eating a burger, had a sip of soda, and a few minutes later he sipped from the same straw. That was enough to make him sick. So even if a food has no ingredients, if gluten ingredients have gotten in accidentally, it's not safe anymore. Some foods are made on the same equipments lines as gluten ingredients, or even simply processed next to machines processing gluten - if a machine is mixing flour and it's poofing all over the room, anything made in that room is likely bad.

So you can take a chance on a food with no gluten, but you're likely to have a lot more accidental gluten issues that way. Usually, checking with a good source is the best way to find out if a food is gluten free. Other celiacs are useful, sites like this, a gluten free grocery guide (there is one that is released every year with brands that are gluten free.).

2. What about vague ingredients like 'spices' and 'natural flavours'? Are those to be avoided?

Spices on an ingredient list are usually okay - they are not supposed to be adulterated with anything. Natural flavors CAN be a problem. Again, they fall into that 'assume not good' unless you find out different. You will see certified gluten free products with natural flavors, though, so sometiems it's fine.

3. If none of the ingredients contain gluten but there is that oh-so common phrase "might contain x, y, z" or "may have been manufactured" with x, y and z, one of which is wheat, do I need to avoid these?

Sometimes yes, sometimes no - good to check with other sources again. Kind of the celiac mantra, LOL. My father has had highly processed foods that were processed with wheat and there was no problem. I've had nuts processed with wheat and was sick as a dog. You just never know. :-P

4. How do I find out if medications are gluten-free? I'm on domperidone for my milk supply (I'm breastfeeding). I also take various vitamins - I haven't looked yet, but I assume the label should help me figure those out.

There is a good site called glutenfreedrugs.com that lists a lot (it doesn't have domperidone listed as gluten free, however. Just checked it). For vitamins, you want to find one specifically that says it is gluten free. For drugs in general - you'll need to ask the pharmacist, who 99% of the time will have no idea. If they are good, they will call up your drug company to check. If they are not, they will say 'I dunno' and if you push, you can get the name of the drug company yourself.

But every time you refill? You'll need to go through this again. The majority of pharmacies are bad about keeping track of what you need to avoid in your drugs, and drug companies are not required to give up much information about their ingredients if they aren't the 'active' ones (completely different set of laws than food, which is pretty frustrating for anyone with food issues). And a lot of the drug offices (if you're in the US) are on the east coast, so you'll want to make sure you go get your drugs early in the day, or have enough time that you can wait a day for the answer.

It takes a bit to get used to thinking of things a different way, but it's kind of like the new baby. It becomes second nature after a few months. Oh, and you'll likely want to have your little bitty tested every few years for Celiac Disease as well. And any siblings, parents, or any other children you have, now that you've been diagnosed. It's highly recommended, whether they have symptoms or not.

And an important thing to know: gluten free is not 'zero gluten.' It is extremely low gluten. Some foods are more 'gluten free' than others, and as you go through this, you likely find that some gluten free foods are fine, and some may end up with more gluten than you can tolerate.

[samuella]

Thanks everyone for all your help! I've been reading evertyhing I can get a hold of - not sure if I am getting more or less confused though!!

1) Do some research on ingredients which gluten hides under eg. Dextrose.Generally it will say in brackets 'derived from wheat or maize ( the later is safe) but if not and you're unsure, skip it. A lot if gluten-free foods don't have a specific gluten-free label. If the ingredients look safe to me, I go for it. Look it up online if you're worried.

2) They should have numbers following them eg. Thickner 1487 . You can look them up online also. It should say in bold under the ingredients 'contains wheat/gluten'

I thought dextrose was safe? It is listed as safe on this site and not listed unsafe on celiac.ca. Also not all the labels I see state something like thickener 1487 - in fact a lot don't - but I think this might be a Canadian thing? I'm reading up on Canadian labeling laws but it's still confusing! For example my canned Heinz Beans says just spices on it, and also onion powder and mustard powder - wondering if the powder could be a problem? I'll google Heinz Beans but just using that as an example.

1. If I'm sure the ingredients listed on a food don't contain gluten, is it safe to eat if it doesn't say it's gluten-free?

Honestly, my answer would be 'assume not.' The issue at hand is cross-contamination.

So everything other than fruit and veg need to be double-checked?! I'll never eat again! Heh. What about things like canned tomatoes. My can says "tomatoes, tomato juice, salt, calcium chloride, may contain citric acid". Do I need to worry about that? I'm also thinking of things like dried lentils and dried or canned beans (have already read about issue of wheat kernels getting in the dried lentils and beans!), jarred spices, rice, corn tortillas, plain potato chips (that just say potatoes, oil and salt)?

There is a good site called glutenfreedrugs.com that lists a lot (it doesn't have domperidone listed as gluten free, however. Just checked it). For vitamins, you want to find one specifically that says it is gluten free. For drugs in general - you'll need to ask the pharmacist, who 99% of the time will have no idea. If they are good, they will call up your drug company to check. If they are not, they will say 'I dunno' and if you push, you can get the name of the drug company yourself.

Thanks! Checked the site but yeah not listed. Boo. Called the pharmacist and they couldn't see gluten listed but not sure if that is enough to be sure?? It's the non-medicinal ingreds that are listed I need to check?

Oh, and you'll likely want to have your little bitty tested every few years for Celiac Disease as well. And any siblings, parents, or any other children you have, now that you've been diagnosed. It's highly recommended, whether they have symptoms or not.

We are going to get my 7yo tested, but I thought the baby was too young to be tested? He's 4 months. He is not gaining weight well so we are very suspicious now that I know I'm celiac and hoping the gluten-free diet will help him since he's exclusively breastfed.

Thanks again! This is so much to take in! Ack!

[quincy]

Thanks everyone for all your help! I've been reading evertyhing I can get a hold of - not sure if I am getting more or less confused though!!

I thought dextrose was safe? It is listed as safe on this site and not listed unsafe on celiac.ca. Also not all the labels I see state something like thickener 1487 - in fact a lot don't - but I think this might be a Canadian thing? I'm reading up on Canadian labeling laws but it's still confusing! For example my canned Heinz Beans says just spices on it, and also onion powder and mustard powder - wondering if the powder could be a problem? I'll google Heinz Beans but just using that as an example.

So everything other than fruit and veg need to be double-checked?! I'll never eat again! Heh. What about things like canned tomatoes. My can says "tomatoes, tomato juice, salt, calcium chloride, may contain citric acid". Do I need to worry about that? I'm also thinking of things like dried lentils and dried or canned beans (have already read about issue of wheat kernels getting in the dried lentils and beans!), jarred spices, rice, corn tortillas, plain potato chips (that just say potatoes, oil and salt)?

Thanks! Checked the site but yeah not listed. Boo. Called the pharmacist and they couldn't see gluten listed but not sure if that is enough to be sure?? It's the non-medicinal ingreds that are listed I need to check?

We are going to get my 7yo tested, but I thought the baby was too young to be tested? He's 4 months. He is not gaining weight well so we are very suspicious now that I know I'm celiac and hoping the gluten-free diet will help him since he's exclusively breastfed.

Thanks again! This is so much to take in! Ack!

My pharmacy is clueless about gluten free ingredients of drugs so you will need to call the manufacturer. sometimes they will even ask you for the batch number on the bottle so have that handy. again, the problem with generics is that most pharmacies change generic suppliers from time to time so you always have to check on the bottle who the manufacturer is. Usually if you call the drug company's customer service they will let you speak to their pharmacist who will let you know. sometimes even THEY have to research to make sure the fillers are corn starch etc.

[Marilyn R]

So everything other than fruit and veg need to be double-checked?! I'll never eat again! Heh. What about things like canned tomatoes. My can says "tomatoes, tomato juice, salt, calcium chloride, may contain citric acid". Do I need to worry about that? I'm also thinking of things like dried lentils and dried or canned beans (have already read about issue of wheat kernels getting in the dried lentils and beans!), jarred spices, rice, corn tortillas, plain potato chips (that just say potatoes, oil and salt)?

Hi samuella, welcome to the forum,

It's really overwhelming at first, and double tough with other food restrictions.

As to the dried beans, peas and lentils, I've never had a problem with them, and I'm super sensitive. I rinse several times, soak, rinse 3-4 more times and carry on with the recipe.

I used canned beans before I started using a pressure cooker, but always checked ingredients. If they contained beans, water and salt, I'd purchase them, and rinse well. Canned tomatoes with the ingredients you listed have been fine for the year I've been gluten-free (but I prefer the cans that say tomatoes, water and salt). Sometimes they're the store brands and they're less expensive.

You may start to crave protein, many people do from what I've experienced and have read on the forum (ravenous hunger, especially mid-day).

Unfortunately, on every trip to the grocery store you must read labels. Mfg's change formulations all of the time, so what was safe last week could make you sick this week. It becomes second nature after awhile. At least you don't have to haul out your magnifying glass, like some of us do!

If you have an oriental or Indian grocery store in your town, you may save money and find a good source of gluten-free Vegan foods, flours, veggies, etc. (I got a full pound of mung bean sprouts for $1.06 at the oriental grocery yesterday.)

Good luck and good health to you and your family!

P.S. I started eating meat again, maybe you won't need to. But if you do, it is what it is, you're just doing what you need to survive and thrive. But everyone's experience and body is different, so you may do perfectly well on a gluten-free vegan diet.

[jolie.fleur.peu]

I'm from New Zealand so maybe it's different?

[WhenDee]

This post made me giggle. Because I was thinking of adding a tagline to my posts that says "you try to be a vegan celiac and see how cheerful YOU are!" LOL

You cannot make any assumptions. I recently posted my frustration with American companies (so far Mars & Frito-Lay are the worst) not listing ingredients. F-L listed an item as being gluten-free in the US, so when I bought it overseas & nothing was listed I assumed it still was (wrong). On certain packaging they just leave out about half the ingredients.

I've been poisoned so many times that now I do check restaurants online before I go. It is often very disappointing, but sometimes you get a happy surprise. One of our new favorites, Nando's, has only a short list of gluten-containing items!

When in doubt, salad.

Also, I've had to go to using very few packaged foods. Just because it was gluten-free when you bought it yesterday doesn't mean that it is today. A friend of mine bought two packages of corn chips off the shelf - one was gluten-free and the other was not. The ingredients changed overnight and the bags were sitting side-by-side. American products will not list wheat as a possible allergen, then put in fine print somewhere else on the package "processed in a facility...." Even one of the brands of gluten-free flour I can find here says this! What the...?! Chocolate manufacturers will use flour to dust their molds & not list it.

At first it is annoying & frustrating. But then you realize it's forcing you to eat very well and that you'll probably live to be 106 and that helps mitigate the frustration. A bit.

If you can find Australian/New Zealand products they are the best-labeled. European products are well-labeled also. Even on this board no one seems terribly concerned about the US products being so poorly labeled - or maybe just used to it?

We should be demanding better labeling & responsibility from US manufacturers!

[samuella]

My pharmacy is clueless about gluten free ingredients of drugs so you will need to call the manufacturer. sometimes they will even ask you for the batch number on the bottle so have that handy. again, the problem with generics is that most pharmacies change generic suppliers from time to time so you always have to check on the bottle who the manufacturer is. Usually if you call the drug company's customer service they will let you speak to their pharmacist who will let you know. sometimes even THEY have to research to make sure the fillers are corn starch etc.

Ah boo. I will call on Monday. I'm taking quite a high dosage so if it's not gluten-free it's certainly a problem. I also just can't come right off it if it does have gluten so I'm hoping it is gluten-free! I have found some references online that it's gluten-free but will call to make sure.

[samuella]

As to the dried beans, peas and lentils, I've never had a problem with them, and I'm super sensitive. I rinse several times, soak, rinse 3-4 more times and carry on with the recipe.

Right, rinse like crazy - I can do that! Thank goodness because I don't know what I'd do without dried beans and lentils! I've been looking at the companies' websites too but not really finding much info on whether the food is considered safe or not.

If you have an oriental or Indian grocery store in your town, you may save money and find a good source of gluten-free Vegan foods, flours, veggies, etc. (I got a full pound of mung bean sprouts for $1.06 at the oriental grocery yesterday.)

We often shop at our local Indian store but the brands are not ones I would be able to easily track down info on gluten and cc issues with. Do you really considered those safe? I would love for them to be safe!

Thanks!

[samuella]

I'm from New Zealand so maybe it's different?

Yes, that would probably be it! Good to know NZ has good labeling laws since I have a friend there I'd like to visit some day!

[samuella]

This post made me giggle. Because I was thinking of adding a tagline to my posts that says "you try to be a vegan celiac and see how cheerful YOU are!" LOL

LOL! On the plus side I figure at least I am used to looking at labels and not eating most products, so hey what's a few (??!!) more?! Oh the lies that we tell ourselves...!

You cannot make any assumptions. I recently posted my frustration with American companies (so far Mars & Frito-Lay are the worst) not listing ingredients. F-L listed an item as being gluten-free in the US, so when I bought it overseas & nothing was listed I assumed it still was (wrong). On certain packaging they just leave out about half the ingredients.

Noooooooooooooooooo don't say that about F-L!! I was happy with their website listing products that are gluten-free! Are you saying I shouldn't trust their list? This is the Canadian list:

Open Original Shared Link

Though note only the Stax crisps are made on dedicated gluten-free lines but my thinking is after getting to 'normal' and being on a strict gluten-free diet of mostly whole foods (with some Stax added in!!) I can try the other ones that may or may not have minor cc issues and see if they bother me? Does that seem like a reasonable plan?

When in doubt, salad.

Though I've read other people saying that they don't trust salad because the server may just pick off the croutons! Oh joy.

Also, I've had to go to using very few packaged foods. Just because it was gluten-free when you bought it yesterday doesn't mean that it is today. A friend of mine bought two packages of corn chips off the shelf - one was gluten-free and the other was not. The ingredients changed overnight and the bags were sitting side-by-side. American products will not list wheat as a possible allergen, then put in fine print somewhere else on the package "processed in a facility...." Even one of the brands of gluten-free flour I can find here says this! What the...?!

I'm in Canada, but I've been trying to read up on both Canadian and American food labeling regulations. I *thought* that if there is wheat or the other major allergens in a food it has to be either listed in the ingreds list or in a 'contains wheat' at the end, not just a 'processed in a facility' line? I thought those terms were used for cc issues? Of course gluten is in things other than wheat that aren't one of the major allergens so that doesn't solve the problem anyhow.

Chocolate manufacturers will use flour to dust their molds & not list it.

I can't hear you na na na boo boo I can't hear you!

But I guess that would explain why my favourite chocolate with only a few ingredients and none of them containing gluten says at the end that it may contain wheat? <insert much swearing here>

But surely please, oh please, the chocolate that doesn't have a 'may contain wheat' at the end is safe? I found a vegan chocolate that has a 'may contain soy' at the end but no sign of gluten in the ingreds list and figured if they list a 'may contain' for one allergen (soy) they'd list it for another (wheat) if it was an issue? Or am I being naive? Or just in denial BECAUSE I WANT VEGAN gluten-free CHOCOLATE!!!

Oh this is certainly a roller coaster...