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I've been trying to eat gluten-free for about a month now, and have gone from being more or less asymptomatic before the diet change (except for constipation) to, for the past week, being permanently knackered and having intense gut spasms several times a day. It feels like the old "spastic colon" I used to occasionally get as part of the "IBS" (in reality, probably medication side effects) that I had in my late teens and early twenties. I realise that big dietary changes can trigger IBS symptoms, but my diet is majorly different between term time and vacations anyway, or when I'm visiting family, or away on holiday, and I never get symptoms like this. I'm eating more or less the same diet as I usually eat outside term time, except that the occasional bread and pasta I'm eating is gluten-free types.

Has anyone else had this problem and fixed it?

Edit to add: I'm being as careful as I can be with gluten given how limited my experience is with this diet — we don't have gluten-containing foods in the house, I check labels for allergen info, and if I'm at all unsure I scan barcodes with the Coeliac UK app. I'm used to label-checking anyway because of my pre-existing food restrictions. I don't eat out except for drinking coffee sometimes, usually at this place where the guy who serves me has a coeliac girlfriend so knows about cross-contamination.

Edited by OrangesAndMelons
Clarification

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Celiac disease is like a chameleon, symptoms can change.  Those old “IBS “ symptoms may have been due to undiagnosed celiac disease.  Now that you have been gluten free for the past month, the tiniest amount of gluten exposure can provoke symptoms.  Maybe even new symptoms that you at never have experienced.  Some celiacs do go through a gluten withdrawal too.  Each day can be different.  

Don’t forget you are just as susceptible to illnesses like food poisoning or a virus as anyone else.  

Hang in there!  

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8 minutes ago, cyclinglady said:

Celiac disease is like a chameleon, symptoms can change.  Those old “IBS “ symptoms may have been due to undiagnosed celiac disease.  Now that you have been gluten free for the past month, the tiniest amount of gluten exposure can provoke symptoms.  Maybe even new symptoms that you at never have experienced.  Some celiacs do go through a gluten withdrawal too.  Each day can be different.  

Don’t forget you are just as susceptible to illnesses like food poisoning or a virus as anyone else.  

Hang in there!  

Thanks! And thank you for the list of possibilities.

I'm pretty sure I don't have food poisoning; I have none of the usual symptoms (as far as I know — I've never had food poisoning, but I'm told it tends to involve feeling/being sick and/or having the runs). I think you're in the US… food poisoning is way more common there than in the UK, I think.

At least some of my "IBS" symptoms were definitely medication-induced, because they began when I started the meds and stopped when I stopped; I did have other symptoms, too, but they went away many years ago (in my early twenties — I'm now in my early thirties). Those latter symptoms might have been coeliac disease, I guess? But after that I felt fine for years 😕 The pain problems I had back then weren't daily, several times a day like this. They were the same type of pain, though.

Gluten exposure is possible, I suppose — I spent the first few gluten-free weeks feeling the same as normal, then in the last week these spasming pains started. Three weeks sans gluten doesn't seem it would be enough to sensitise me, though?

Gluten withdrawal — that's an interesting possibility. I've never heard of that. My partner wondered if taking away the gluten caused healing which then caused my various other illnesses and medications to interact in ways that cause the pains… which I guess maybe would be a type of withdrawal 😂

This is all so shite; I'm going abroad tomorrow for two weeks, and I could really do without gut pain :(

Thanks again :)

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Hi OandM,

I had gut spasms for 6 weeks after going gluten-free.  I think it was related to healing in the gut.  Kind of like the formerly comatose gut had woken up.

I suggest you take it easy on your gut for now.  It can take 18 months or more to heal the gut.  What happens is the villi that line your gut start to regrow.  When they regrow that adds surface area for bacteria to colonize.  More bacteria can cause gut distress.

It is helpful to avoid sugar and carbs for a few months at least.  Sugar and carbs feed bacteria and can cause symptoms.

Eat simply and avoid processed foods, even gluten-free foods.  You'll heal faster if your diet is simple and easy to digest, with low amounts or no spices.  Your gut is sensitive while healing.  Take it easy on it.

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9 minutes ago, GFinDC said:

Hi OandM,

I had gut spasms for 6 weeks after going gluten-free.  I think it was related to healing in the gut.  Kind of like the formerly comatose gut had woken up.

I suggest you take it easy on your gut for now.  It can take 18 months or more to heal the gut.  What happens is the villi that line your gut start to regrow.  When they regrow that adds surface area for bacteria to colonize.  More bacteria can cause gut distress.

It is helpful to avoid sugar and carbs for a few months at least.  Sugar and carbs feed bacteria and can cause symptoms.

Eat simply and avoid processed foods, even gluten-free foods.  You'll heal faster if your diet is simple and easy to digest, with low amounts or no spices.  Your gut is sensitive while healing.  Take it easy on it.

Hi gluten-free, thanks for posting! Glad to hear it's not just me — well, I'm not glad that you had pain, but hopefully you know what I mean.

I try to avoid excessive carbs and eat a generally low-sugar diet because of my diabetes (and seem to be doing a reasonable job of it; my HbA1c is firmly inside the normal range, which is where I like it because I'm unwilling to accept just being within the higher limit they set as a target for diabetics), but I am still occasionally eating some gluten-free bread (mostly homemade with lots of fat in it, because it helps with the GI) and pasta — I tried the legume versions as they're better on the GI but they were, frankly, grim.

I could try cutting out the bread and pasta entirely, although it'll be a bit awkward; I don't eat rice very often because it does appalling things to my blood sugar, and potatoes aren't *too* bad, but they're not ideal. Oats are good, but not really "main meal" material 😂 I used to eat Hi-Lo or Burgen soya and linseed bread, but obviously those are out now. I have to avoid cheese, aged meats, and anything with fermented beans or fish, which means a lot of East and Southeast Asian food is out unless homemade to my specifications. It'll have to be essentially a fresh meat and vegetables diet…

It's so weird, all this! Thanks for your help :)

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It may seem weird at first.  But in time you should be able to adjust to a new way of eating and even like it.  Oats are not recommended for the first 6 months of the gluten-free diet.  They can cause an immune reaction in some of us and also are often cross contaminated.

Anything with soy sauce should be avoided because it usually has wheat in it.  There are wheat free soy sauces available though.  But soy is not an ideal food for people anyhow.

Meats and veggies and eggs and nuts are a fine diet.

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8 hours ago, GFinDC said:

It may seem weird at first.  But in time you should be able to adjust to a new way of eating and even like it.  Oats are not recommended for the first 6 months of the gluten-free diet.  They can cause an immune reaction in some of us and also are often cross contaminated.

Anything with soy sauce should be avoided because it usually has wheat in it.  There are wheat free soy sauces available though.  But soy is not an ideal food for people anyhow.

Meats and veggies and eggs and nuts are a fine diet.

It's more that I feel like it's weird that my body can have a violent response to minuscule amounts of a perfectly innocuous staple foodstuff that my ancestors have been eating for thousands of years 😂😡😂

Yes, I chucked out my old soy sauce and bought a gluten free one. Some soy sauces are worse than others for tyramine, and I know I can have small amounts of the brand I'm used to (Kikkoman) without it affecting my blood pressure, so I've bought the same brand but gluten-free, in the hopes it'll be equally tolerable on the blood pressure front.

My clinic recommends retaining gluten-free oats in your diet until the second biopsy — if everything's looking good, I guess they tell you to continue eating them; if not I'd assume it's something they'd consider as a next step… I'm happy to go along with that and really hope I can continue, because they're helpful for my cholesterol, which is higher than my doctor would like it to be given that I have diabetes, since the recommended cholesterol level is lower for diabetics, and I struggle to get enough fibre as it is — I'm not a fan of quite a lot of vegetables, and I can't eat too much fruit because of the sugars (though it depends on the fruit).

I once spent a year eating pretty much only meat, eggs, nuts and veg (and three weeks almost solely eating peanut butter, because I was in hospital and they rarely provided anything I could eat), and I don't think I can do it again… it's really restrictive and combined with the gluten thing would be unmanageable with my lifestyle, I think — for one thing, my partner cooks so we generally eat much the same meals, and it seems unfair to restrict him. Tho to be fair, we were out of the house yesterday and he had a vanilla slice 😁 It was a huge motorway service station with lots of restaurants and shops, and the only things I could find that were safe for me to eat were some prepackaged sweet potato falafels, a gluten-free prawn cocktail sandwich, and various prepackaged snack foods. Joy…

 

 

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7 hours ago, OrangesAndMelons said:

It's more that I feel like it's weird that my body can have a violent response to minuscule amounts of a perfectly innocuous staple foodstuff that my ancestors have been eating for thousands of years 😂😡😂

Yes, I chucked out my old soy sauce and bought a gluten free one. Some soy sauces are worse than others for tyramine, and I know I can have small amounts of the brand I'm used to (Kikkoman) without it affecting my blood pressure, so I've bought the same brand but gluten-free, in the hopes it'll be equally tolerable on the blood pressure front.

My clinic recommends retaining gluten-free oats in your diet until the second biopsy — if everything's looking good, I guess they tell you to continue eating them; if not I'd assume it's something they'd consider as a next step… I'm happy to go along with that and really hope I can continue, because they're helpful for my cholesterol, which is higher than my doctor would like it to be given that I have diabetes, since the recommended cholesterol level is lower for diabetics, and I struggle to get enough fibre as it is — I'm not a fan of quite a lot of vegetables, and I can't eat too much fruit because of the sugars (though it depends on the fruit).

I once spent a year eating pretty much only meat, eggs, nuts and veg (and three weeks almost solely eating peanut butter, because I was in hospital and they rarely provided anything I could eat), and I don't think I can do it again… it's really restrictive and combined with the gluten thing would be unmanageable with my lifestyle, I think — for one thing, my partner cooks so we generally eat much the same meals, and it seems unfair to restrict him. Tho to be fair, we were out of the house yesterday and he had a vanilla slice 😁 It was a huge motorway service station with lots of restaurants and shops, and the only things I could find that were safe for me to eat were some prepackaged sweet potato falafels, a gluten-free prawn cocktail sandwich, and various prepackaged snack foods. Joy…

That's why it's smart to take some safe foods with you when going out.  Oranges and hard boiled eggs and nuts are easy to carry options.  You are right that our food choices are narrower than most people.  But our immune systems are not like most people's either, so we have to choose between being constantly sick and eating gluten-free.   You could try to find some jerky to carry around too.  Your partner doesn't have to eat what you eat.  Just let him eat what he wants and get your snacks out.  Then slowly chew them while making the stink-eye at him and growling. :)

I wouldn't be eating anything at a gas station type place at this point in your healing.  You are way too early in the healing process to be experimenting / taking risks.  After a few years and healing things are different.   Our bodies immune system calms down and our guts heal.  Then we may find we can eat things that used to bother us.  Just not gluten.

 

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8 hours ago, GFinDC said:

 

I had plenty of food with me because I was en route to the ferry to go abroad (millions of nut bars, some shelf-stable bean salads, crisps, gluten-free instant porridge, and suchlike) but I didn't want to break into it unless I had to, cause I've got to go two weeks in a place I don't know. It's not exactly a gas station… service stations are more like, a food court with a few fast food places, a sandwich bar and a couple of coffee shops, plus a mini supermarket, a newsagent, toilets, that kind of thing. And in that one, three Starbuckses 🤨 One of the restaurants was a Coeliac UK approved pizza chain (Pizza Express) but I'd have had to go through to the restaurant part and have a sit-down meal, which I didn't really want. (Also, really bloody expensive.)

I don't take risks at the moment… I'm very careful. For example, the Pret a Manger chain has sandwiches on gluten-free bread, but they don't actually guarantee they're gluten-free sandwiches, so I don't eat them. Whereas the Waitrose prawn cocktail sandwich I had was prepacked and labelled as a gluten-free sandwich.

Jerky is out for me, for the same reason I have to be careful with soy sauce no matter how un-gluteny it is — it's aged protein, therefore high in tyramine and likely to interact with my medication and try to kill me. Health-wise I'd be better off eating an entire loaf of bread 😂😂😂

My partner's eaten things in front of me that I can't have because of my diabetes or my medications for years. I'm used to it, and it doesn't really bother me.

Thing is, nothing really upsets my stomach. I find most cheese revolting, but in general I have a very tolerant stomach that seems to pay almost zero attention to what I sling in there. I get constipated, but I've never had anything like nausea, pain, bloating, diarrhoea etc. that could be attributed to eating specific foods. That's why the coeliac thing is a surprise, and very annoying. Having to mess about this much for something I don't even feel the effect of.

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Does Costco Coffee still have has prepackaged gluten free brownies and chicken wraps?  We ate a lot of those when we traveled in the UK, but that was three years ago.  

Do you have gluten-free travel cards which explain how to carefully prepare your food?   Those cards are available in many languages and are free (goggle it).  We even found them helpful in some markets when it was difficult to read labels (e.g. Eastern Europe). 

Edited by cyclinglady

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8 hours ago, cyclinglady said:

Does Costco Coffee still have has prepackaged gluten free brownies and chicken wraps?  We ate a lot of those when we traveled in the UK, but that was three years ago.  

Do you have gluten-free travel cards which explain how to carefully prepare your food?   Those cards are available in many languages and are free (goggle it).  We even found them helpful in some markets when it was difficult to read labels (e.g. Eastern Europe). 

Am guessing that's a phone/brain autocorrect from Costa, and yes, they do! I can't have the brownies because of the sugar, but have clocked the wrap 😁 Sadly that motorway services had a Starbucks, and their gluten free sandwich option is a ham and cheese panini, and besides not liking cheese, I can't have it because of the medication interaction 🙄

I haven't printed the travel cards for this trip, as almost everyone in the Netherlands speaks English, and also I was in a bit of a mad rush packing and even forgot to bring the vehicle logbook, but do have them on my phone, at least. Won't be able to hand it over for kitchen staff to read, but never mind…

How did you find the UK for coeliacs, compared to home?

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Xanthan gum...gives me gut problems and diarrhea. It gives my Celiac husband joint pain and swelling.

It doesn't bother my Celiac mother.

But that's the main difference between your 'before' diet and 'after' diet that I can identify. Most gluten free bread, and baked goods, contain xanthan gum. Even most of the gluten free baking mixes (at least in the USA) contain xanthan gum.

 

If I do pancakes, muffins, cornbread, etc I make it from scratch, usually it's egg that holds things together.

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2 hours ago, Ranchers Wife said:

Xanthan gum...gives me gut problems and diarrhea. It gives my Celiac husband joint pain and swelling.

It doesn't bother my Celiac mother.

But that's the main difference between your 'before' diet and 'after' diet that I can identify. Most gluten free bread, and baked goods, contain xanthan gum. Even most of the gluten free baking mixes (at least in the USA) contain xanthan gum.

 

If I do pancakes, muffins, cornbread, etc I make it from scratch, usually it's egg that holds things together.

Good point.  During my first year, I kept thinking I was getting glutened.  Turns out it was Xanthan Gum.  It bothered  me, but not my gluten-free husband.  I bake using other gums now.   Since healing, I can have commercial products containing Xanthan Gum in small amounts.  Usually it is a treat while on vacation or a holiday.  But I bet if I consumed it more often, I would  feel sick (actually I do start to feel yucky while on vacation, but I bet it is from the gluten-free junk food I consume).  

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I felt like I got hit by a semi truck for about a month after I stopped eating gluten. Body aches, weak, shaking, muscle spasms, gut ache, and headache. I could hardly get out of the chair. For me, I lost 30 lbs. in that month (and I wasn't overweight), all water weight, and under all that, I was just a bag of bones. So I was starving to death.  It all settled down gradually and I've gained back half of the weight in muscle and probably bone mass. I'll be 63 in 2 weeks and feel great, but it's taken 5 years to get there, gradually finding vitamin deficiencies and filling in the gaps of what the undiagnosed disease caused.  I would not have built back to the level I am now without working with a naturopath that was knowledgeable about Celiac's and their issues. And we now recheck for antibodies and vitamin deficiencies onc a year.  Traditional doctors, at least none of the ones I tried, did not even consider vitamin deficiencies or do any rechecking.  Also consider a Functional Medicine doctor, they get the thing about the whole system is all connected.

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On 7/21/2019 at 10:20 PM, Ranchers Wife said:

Xanthan gum...gives me gut problems and diarrhea. It gives my Celiac husband joint pain and swelling.

It doesn't bother my Celiac mother.

But that's the main difference between your 'before' diet and 'after' diet that I can identify. Most gluten free bread, and baked goods, contain xanthan gum. Even most of the gluten free baking mixes (at least in the USA) contain xanthan gum.

 

If I do pancakes, muffins, cornbread, etc I make it from scratch, usually it's egg that holds things together.

That's interesting… I probably am eating more of that than I was. We did already use xanthan gum in the kitchen, in lower-carb breadmaking, and it's in a few things I used to eat, but the quantities will be higher now.

Happily, for the last couple of days I haven't had the gut cramps — maybe they won't come back?!

 

On 7/22/2019 at 1:04 AM, cyclinglady said:

Good point.  During my first year, I kept thinking I was getting glutened.  Turns out it was Xanthan Gum.  It bothered  me, but not my gluten-free husband.  I bake using other gums now.   Since healing, I can have commercial products containing Xanthan Gum in small amounts.  Usually it is a treat while on vacation or a holiday.  But I bet if I consumed it more often, I would  feel sick (actually I do start to feel yucky while on vacation, but I bet it is from the gluten-free junk food I consume).  

Ooh — could you say what gums it is that you use?

Being away from home is tricky — I'm struggling a bit being in the Netherlands at the moment with no cooking facilities.

10 hours ago, Beverage said:

I felt like I got hit by a semi truck for about a month after I stopped eating gluten. Body aches, weak, shaking, muscle spasms, gut ache, and headache. I could hardly get out of the chair. For me, I lost 30 lbs. in that month (and I wasn't overweight), all water weight, and under all that, I was just a bag of bones. So I was starving to death.  It all settled down gradually and I've gained back half of the weight in muscle and probably bone mass. I'll be 63 in 2 weeks and feel great, but it's taken 5 years to get there, gradually finding vitamin deficiencies and filling in the gaps of what the undiagnosed disease caused.  I would not have built back to the level I am now without working with a naturopath that was knowledgeable about Celiac's and their issues. And we now recheck for antibodies and vitamin deficiencies onc a year.  Traditional doctors, at least none of the ones I tried, did not even consider vitamin deficiencies or do any rechecking.  Also consider a Functional Medicine doctor, they get the thing about the whole system is all connected.

That sounds awful 😱 I'm glad you're feeling better now.

The clinic checked my vitamin levels and recommended iron and vitamin D supplements — not sure what else they checked. Hopefully B12, at least. I'm not sure what a functional doctor is — I'd have to go private to see one, though, and I can't really afford that.

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