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Gluten Free Guerrillas
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Coeliac and trigger foods

Hiya, sorry for the long post. I’ve been coeliac for over 10 years and still struggle daily with bloating and bowel problems. I stick to what I though was a strict gluten free diet staying away from oats, barley and rye also. My diet overall is pretty poor and contains a lot of caffeine and sugar ! I’ve recently spoken to a personal trainer / nurse and he has advised I begin to follow a plant based lifestyle with the occasional portion of good quality meat however, no dairy, refined sugars or packaged food. He also informed me that as a coeliac I should not be eating foods such as onions, tomatoes, any form of berry (except blueberries) and nuts amongst other things ! I’ve never been told this before and I was just wandering if anybody else has problems with these ingredients and if so what others and does anybody follow a plant based lifestyle for relief of symptoms and health ?

Thank you

Lauren

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I really don't know where he's getting his information from!

Best I can guess is that he's trying to get you on some sort of FODMAP diet, but that's not a lifestyle, it's an intolerance diet (you avoid some foods for a short period, then reintroduce them gradually).

Around 50% of people with coeliac disease have a dairy intolerance, and around 50% also have issues with Soya. I would try cutting those out in the first instance, but only for about a month. After a month, try a small amount of one, wait 3 days to see if you get any symptoms. If you do, then you need to avoid it for good. Reintroduce the other after a further week.

There are other cross reactive foods, but those are the main ones!

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It's also occurred to me, that if you still have coeliac symptoms, you're supposed to go back to your doctor for a follow up blood test, to check antibodies are down to 0. It's sometimes possible for them to remain high, despite a gluten free diet - if you're in that group, you need to know.

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Thank you so much for your reply, I’ve booked an appointment with my doctor and I’m in the process of removing dairy first from my diet ... proving to be quite difficult !

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Hi Candyfloss18,

It sounds to me like your personal trainer is partially correct. It is highly likely from what you have said that you have secondary food intolerances – which as a coeliac is actually quite common. However the list he has suggested you avoid seems bizarre to me in places (and I’m a Coeliac with multiple food intolerances!).

Dairy and refined sugars are two culprits that I definitely agree with. If you have any fermentation going on in your guts, these will definitely not help you feel any better. Personal experience has taught me this one! Losing them both will be quite a shock to the system at first, albeit worth it in the longer term. Don’t be surprised if you have some cravings to ride out in the beginning whilst your body adjusts.

Keeping junk food to a minimum is also a good idea; and it sounds like he is steering you towards the lower carbohydrate fruits. These also include red-currants, black-currents, and blackberries. If you can tolerate them unsweetened, rhubarb and gooseberries can also be included (try to also avoid artificial sweeteners, they are not a healthy alternative!).

However things like onions, tomatoes and nuts are fine to eat in most cases - and have no known direct link to Coeliac Disease. I still eat all three regularly. That said, you may need to keep a food diary to work out which of these you personally can and can’t tolerate (for example, I have to avoid macadamia nuts - they make me ill).

I’ve recently started following a Keto diet for secondary health reasons because I found out that my body wasn’t coping very well with the amount of carbs I was eating. It sounds like your personal trainer may have heard of this type of diet and is suggesting you use some of the elements from it.

By the way, caffeine (if used at all) after 2pm is arguably a bad idea. Give your adrenals a break!

Feel better soon.

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I heard in an interview from a sleep expert that caffeine has a half life of 6 hours, so having a double espresso at 3pm is the same has having a single espresso at 9pm, which most people would agree is daft! :D

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Thank you for your comment really appreciate it. Dairy and sugar are the two main things I’m trying to remove, I gave up both for 4 days and the withdrawal was awful I couldn’t believe it and I caved :( I plan to try again tomorrow !! Also milk, I’m struggling to find a dairy free gluten free milk that I enjoy drinking ! Any recommendations would be appreciated :)

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Btw,

If you do remove dairy from your diet completely, you must ensure that you find new sources of dietary calcium and vitamin D. Letting your calcium levels drop too much will put you at risk of osteoporosis in the longer term (trust me - you don’t need this problem!).

Alpro almond is the dairy free milk that I have used the most in the past, but I’m still struggling to adapt to the sugar-free version.

I think that Violife is one of the better dairy free ‘cheeses’. It’s available in most health food stores and many supermarkets. Even better is that it’s made in a variety of different flavours.

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I read your post with interest as I have been diagnosed and gluten free for just over a year and I still get cramps and bloating. After eating a cheesecake made with condensed milk, I was feeling quite sick and realised I was also lactose intolerant. Although over 6 months I can now have the odd portion of milk without any effects. I still wouldn't have full fat milk or cream though. I'm not sure about avoiding all the other items on the list your trainer gave you. Since I joined slimming World earlier this year, I've found a general healthy eating diet is helping with my symptoms. Might be worth visiting your GP to discuss too.

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You probably have secondary lactose intolerance :)

Most likely you'll be fine with milk when your guts are healed completely, if not, then perhaps you have regular lactose intolerance.

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or you might possibly try goat or sheep dairy in small amounts rather than cow - for some those are less reactive options....

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If you are having some milk, it would be better to drink whole milk, ideally unhomogenised, because it has proportionally less lactose than skimmed and semi skimmed, and you would have the benefit of fat soluble vitamins.

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Can I ask what unhomogenised means please ? I’ll get some of this

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Some of us having skin issues related to gluten intolerance, cannot eat "hidden" gluten either. I think a lot of people with coeliac react to same tiny amounts in their guts as others get on their skin. Just not that visible. With tiny amounts, like vitamins made with dextrin derived from barley, I only get a small, itchy rash after eating vitamins 2-3 times. But I always wonder how it cannot affect the guts too.

So I'm wondering how strict you have been on your GF-diet?

Probably stricter than the 20ppm standard.. but it feels like there's gluten everywhere.

Have you ruled out glucose syrup, dextrose and dextrins derived from wheat or barley (no need to label it, but everything seems to contain it) sugary things, like caramel colour can also be made from glucose made from wheat. (As can xylitol and similar be, I'm fine with these stuff it seems)

Cellulose fibers from wheat? (Can be found in some tea bags etc)

Vinegar, can be both derived from grains or sealed with glue made from wheat. (Apple cider vinegar should be the safest option)

Anything with alcohol can be derived from grains too, pure alcohol don't need to label anything in their beverages it seems.

Vitamin E can be derived from grains.

Binding agents and fillers too, and some colouring. Etc

My memory list is "avoid anything spelled with dex, or ending with tol or hol, or contains sugary stuff and starch/fibers of unknown origin" to minimize the risk of feeding my eczema.

Sometimes I do try glucose syrup, to see if it's from corn or wheat.coz most of it is from corn.

Some coeliacs have some kind of cross allergy to corn though, and others to milk.

I find it hard to eat oats and teff I think it was, but I hope to be able to it oats later on.

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Oh my god I can’t believe how many hidden Ingredients contain gluten or are derived from grains !!! It’s literally everywhere ! I always eat glucose syrup !! I’m going to write all these down and keep an eye out !! Thank you

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Yes.

I think it's easier to identify them after a proper break from all of it.

Most glucose syrup is derived from safe sources, but not all of it. The sources don't need to be labeled. But it's easier to find safe glucose syrup if you have a "I feel great today" starting point.

I guess I was just lucky because I went all in and excluded everything from grains, ate really basic and clean food (no additives) for 1,5-2 months.

One of my first pitfalls was to celebrate with gluten free bread, from the gluten free shelf.. I got devastated, thought that I had to rule out something else or had cancer or whatever.

But Google gave me answers.

But to realise that one is ridiculously sensitive, and that there's millions of hidden sources everywhere.. that one even has to read labels from GF shelves.. thats hard to handle.

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Hi, both caffeine and sugar can cause bloating and diarrhoea. I have a problem with coffee, as it always makes me 'go' because it relaxes the smooth muscles in the gut, so stopped drinking it. I also restrict my sugar intake (sucrose) because more than just a small amount (about 12g tops) will create osmotic diarrhoea and if extreme, makes me very ill indeed. My skin goes grey, I am sweating all over my body and feel as though I could collapse and die. Afterwards, I am wiped out for a week. Definitely to be avoided. Just something you might consider.

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And then there's this known fact that it's difficult to eat safely out, where one third of restaurants in the states contained gluten even though labeled GF (https://amp.usatoday.com/amp/3451134002)

But there's a similar issue with gluten free food bought at shops, where Australia found gluten above 20ppm in 1/40 items. (https://amp.abc.net.au/article/10479564),

And in italy approximately 10% of the GF market (naturally GF too, like beans) contained gluten, and about 5% of the products contained 10-20ppm. (Gf labeled food had 4% above 20ppm, 2/48)

ncbi.nlm.nih.gov/pmc/articl...

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Yeah I've never heard that either but I was diagnosed over a year ago and I'm still sick so I'm curious... I've heard of nightshades but not familiar with what they are or why they're bad other than tomatoes are on the list and they cause gut related symptoms and inflammation. Maybe he's trying to have you avoid anything that might upset your stomach and or cause inflammation.... ? I'd ask him for details as to why you shouldn't eat those things and maybe give it a trial run. Good luck!

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Nightshades are a group of vegetables that include tomatoes, aubergine, potatoes and peppers. They can be inflammatory, so you might cut them out if you're looking to heal your gut and reduce inflammation. There's no reason to stop eating them forever more, most of the time, when we're told to cut them out, it's only for a one month period.

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Thank you! Good to know!

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Another diet to consider may be the Autoimmune Protocol diet. It’s an elimination diet which may help you identify any particular problem foods.

thepaleomom.com/start-here/...

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This thread is great... thanks everyone!

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Wow! I definitely had not ever heard about cutting those regular foods out. What was his reason? I also don’t think it is a super good idea to cut out more than one food at a time (of course with exception). Just doing one at a time is better so you know which food is causing issue. I’ve been told by my nutrition adviser to cut out corn and oats too. There are just a plethora of foods in our modern world that are seriously bad for our bodies (preservatives and all processed foods). Also a BIG issue I’ve discovered is most of us do not get the vitamins and minerals we need. I’ve started taking Youngevity’s products and I am feeling amazing for the first time in my life in conjunction with going gluten free.

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Good advice here. I’m also coeliac and I have IBS and multiple food intolerances including most of those listed above and fructose which takes out most fruit. (I just don’t eat processed foods). Even after all the elimination I was still painfully bloated and constantly thirsty. My endocrinologist put me on a new regime and I was wondering if anyone else has tried it. I’m now on spironolactone. It has had a dramatic effect and has massively reduced the bloating and I’m not constantly thirsty and going to the loo and my IBS-D has reduced a lot. It had stabilised how my body deals with fluid and it’s now being sent to the cells that need it rather than to the Gut. Unlike most people that will be diagnosed a diaretic I pee less not more.

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