Keep getting glutened, struggling to cope

[jonked]

I've been gluten-free now for a couple of years - not formally diagnosed coeliac as I don't want to do a gluten challenge. Before I quit, I had terrible IBS, brain fog & fatigue, swollen painful ankles and occasional intensely itchy rash on my hands and elbows that in retrospect looked like DH. After stopping all these things gradually cleared up to the point where physically I feel incredibly healthy most of the time. The first 18 months or so were great, I felt I'd figured it all out and could move on with my life.

The problem is that I now seem to have become completely super sensitive to gluten. Every 3-4 weeks I have what I presume is a gluten reaction. For me, it takes 6-12 hours to come on, I feel completely utterly exhausted like I'm coming down with flu, my vision seems to go weird and usually have to go to bed in the middle of the day - then I bloat, hugely, like a six inch expansion on my normal stomach size. Followed by days of brain fog, anxiety, tiredness, joint pain and then gradually the bloating goes and I'm suddenly better. I don't get any diarrhea at all now unlike when I ate gluten regularly. Almost every time this happens after eating out so I don't know 100% that there has been gluten, though there have been times when I've known that I've accidentally eaten some (such as a friend cooking something including soy sauce) and the reaction has come on time exactly as expected. 

Last weekend the culprit (I think) was eating some Walkers Crisps in a bar, which I knew are 'made in a factory that includes gluten' but I thought the risk would be minimal - plus I'd had a couple of drinks and that always affects my judgement. I'm trying so hard to be 100% gluten free, constantly refusing to eat out with people, eat at their houses etc and yet somehow every month I make a mistake and lose pretty much a whole week to feeling awful and unable to work (am self employed). Which is massively affecting my finances and my stress levels. The fact I don't have a diagnosis makes me question whether it's all in my head and I'm going insane, despite the pretty strong evidence that these are gluten reactions. Or that it's something else altogether, though the fact I feel great most of the time seems to indicate it's a reaction rather than some kind of other ongoing GI condition.

I feel like I don't know what to do. My friends (who I think don't believe me/ think it can't be gluten) want me to return to my GP but I don't see what that is likely to achieve given I know I can't face a gluten challenge (and more to the point can't afford it!). I can withdraw even more into my own safe gluten-free bubble but I'm already feeling cut off from being able to socialise like I used to and that's making me depressed and isolated. Sorry, this is a bit of an aimless rant, but everyday life seems to have become such a struggle and I'm exhausted with it. 

[Jmg]

 

 

 The problem is that I now seem to have become completely super sensitive to gluten.   

This is normal believe it or not, if anything in this condition qualifies as such... It's because its your immune system reacting, once it's not under constant attack it gets more vigilant for any trace of teh big G.  

 

 

ILast weekend the culprit (I think) was eating some Walkers Crisps in a bar, which I knew are 'made in a factory that includes gluten' but I thought the risk would be minimal - plus I'd had a couple of drinks and that always affects my judgement.  

Walkers crisps are definitely a no-no. I've seen multiple accounts of people being glutened by them, even the ready salted. Apparently its related to their production process, you have to treat their entire output as contaminated. Such a pain in the arse when they're the most popular crisps in the country  Seabrooks, Tyrells, Kettle (obviously not the wheat/barley flavours) are ok.  One of the reasons I've stopped drinking was because once the defences are down its so easy to slip up.  Not that I'm telling you to go on the wagon!

 

 

The fact I don't have a diagnosis makes me question whether it's all in my head and I'm going insane, despite the pretty strong evidence that these are gluten reactions. Or that it's something else altogether, though the fact I feel great most of the time seems to indicate it's a reaction rather than some kind of other ongoing GI condition.

I feel like I don't know what to do. My friends (who I think don't believe me/ think it can't be gluten) want me to return to my GP but I don't see what that is likely to achieve given I know I can't face a gluten challenge (and more to the point can't afford it!). I can withdraw even more into my own safe gluten-free bubble but I'm already feeling cut off from being able to socialise like I used to and that's making me depressed and isolated. Sorry, this is a bit of an aimless rant, but everyday life seems to have become such a struggle and I'm exhausted with it. 

I could've written almost your entire post. I know exactly where you're at, the only difference between us is I did go through the gluten challenge, it was horrible and the biopsy didnt show coeliac. So although there are merits to going through the challenge and letting Doctors test you, there are no guarantees. That one is your call. 

Not that the diagnosis makes much difference ultimately. I know from my own body that I'm either atypical coeliac  (sometimes the tests don't show it) or severe non coeliac gluten intolerant. Either way the only cure is a strict non gluten diet.  

And that sadly is the best advice I can give you. It's eating out which is tripping you up so you have to either eat before going out, choose venues that you've thoroughly researched etc. You need to develop a level of discipline about the diet that would have people on the outside thinking you're a crank. Let them. (I would type something else there but the filter might stop it). They don't get the affects of gluten, you do. 

Ok something practical. Consider joining Coeliacs UK. I think its £20 but it will be money well spent. They send you a book with all the gluten free products in and there's an online searchable database too. It became my bible when I first went gluten-free.  They can also put you in touch with others in the same boat. 

You've found a really good forum here with fantastic people who understand. So take heart from that.

 

[jonked]

Thanks for the response Jmg, the info on Walkers Crisps is really helpful - I had half convinced myself that it was unlikely to be them and therefore perhaps nothing to do with gluten at all. Plus I've been staring at my ridiculously bloated belly in the mirror and questioning whether perhaps the truth is that I'm always this fat, but I just hold my belly in, and the whole thing is in my head. Really I know that this isn't true but after a glutening I go totally insane and irrational amongst all the other symptoms. 

Awful for you that you went through a gluten challenge and didn't get the expected result, that would be so frustrating - think I'd be ready to form a terrorist group and start burning down bakeries or something at that point! 

Drinking is definitely a big issue. The last few glutenings have all being drink related. Once I absent mindedly ate some chips when they were offered me without thinking about it at all till the next day (clearly cross contaminated in the fryer). Another time I ate gluten containing crisps (Pipers brand) - too drunk to read the ingredients properly, though it's a really badly designed packet anyway. Another time I risked a curry from a takeaway (I've found curries tend to be really Russian roulette, again must be cross contamination and depend on the takeaway kitchen). Plus actually in general I do seem to be able to tolerate alcohol less since going gluten free and especially if I drink too soon after a glutening - I am drinking a lot less now but that's also making me feel the odd one out and cut off from people. 

I know the only thing is to see it all as a learning experience and be ever more disciplined - it just feels like I'm trapped in an endless cycle where I have a few good weeks and then plummeted back to square one because of a moment of complete thoughtlessness. Like when I relax my guard for a few minutes an idiot part of my brain leaps in to sabotage myself! I will check out Coeliacs UK, thanks for the tip.

[Jmg]

 

Thanks for the response Jmg, the info on Walkers Crisps is really helpful - I had half convinced myself that it was unlikely to be them and therefore perhaps nothing to do with gluten at all. Plus I've been staring at my ridiculously bloated belly in the mirror and questioning whether perhaps the truth is that I'm always this fat, but I just hold my belly in, and the whole thing is in my head. Really I know that this isn't true but after a glutening I go totally insane and irrational amongst all the other symptoms. 

Yeah I'm with you. A big proportion of the gluten bad stuff for me is happening in my brain. Horrible depression, brain fog etc. Other stuff is also internal, my eyesight, chest, back or joint pain, stomach cramps etc. I remember actually being happy when I got a rash after gluten, because there was a physical effect I could show people.  to 'prove' it wasn't all in my head...

With the pub snacks, get that coeliac book, but also google some of the manufacturers. I'm ok with most salted nuts (NOT DRY ROASTED) for instance, so that's a good go to in a bar where walkers is the only option. If you're eating those your less likely to slip up and eat something you shouldn't.

 

Awful for you that you went through a gluten challenge and didn't get the expected result, that would be so frustrating - think I'd be ready to form a terrorist group and start burning down bakeries or something at that point! 

I got very bitter about the medical establishment to be honest. I've had years of trying to get sorted for different things and being fobbed off. Never felt they read my notes, felt dismissed as a hypochondriac etc. I had more help and far better info from this board than I ever got from my Gastro:

 Now I've put it past me and live as if I got the Coeliac diagnosis. If I ever get the DH back I may ask for a biopsy, but I'd rather not get it!

 

 Drinking is definitely a big issue. The last few glutenings have all being drink related. Once I absent mindedly ate some chips when they were offered me without thinking about it at all till the next day (clearly cross contaminated in the fryer). Another time I ate gluten containing crisps (Pipers brand) - too drunk to read the ingredients properly, though it's a really badly designed packet anyway. Another time I risked a curry from a takeaway (I've found curries tend to be really Russian roulette, again must be cross contamination and depend on the takeaway kitchen). Plus actually in general I do seem to be able to tolerate alcohol less since going gluten free and especially if I drink too soon after a glutening - I am drinking a lot less now but that's also making me feel the odd one out and cut off from people. 

I'm approaching 2 years on the wagon now and am surprised because I absolutely loved a drink, my social life largely revolved around it tbh as it does for many of us in the UK!  I loved my beer, moving from lager to real ales and guinness and in a session I could keep up with most, I kept an eye on my intake and wasn't addicted, although I was a binge drinker and did go over the top quite often.  

After I went gluten free I did move on to cider and I found I enjoyed it. I already loved wine. Hangovers were a PLEASURE once gluten was removed. I was however far more 'delicate' than before. I also seemed to get drunk quicker. I couldn't drink the same quantities and I could find myself feeling sick or being sick if I overdid it. 

What made me stop? There wasn't a damascus moment, but I did begin to connect my condition to my previous drinking habits. I think one reason I loved drinking so much was that it helped to dull the persistent anxiety I lived with. I also think there is a strange attraction that people intolerant to gluten have towards it. I loved beer, baked goods, pastries etc. I think my relationship to it wasn't entirely good and as I felt ever more vulnerable to diet mistakes I didn't want to let my guard down as much. 

Not drinking whilst everyone around you does isn't always easy and it has distanced me from people. So I don't recommend it as such, I may have a drink again in time, but for now it suits me to try and give my digestion as much of a break as possible.

As for the takeaways, I wouldn't risk it. At a push I'll get Mcdonalds fries. There's a gluten free option at a chip shop locally I occasionally have, but I wouldn't trust the common or garden local curryhouse or takeaway. Pity cause I love a curry also

As for feeling cut off from people, I even feel cut off from myself prior to removing gluten. I'm not the best person to advise you, I'm doing ok on the diet but not in adjusting to a new life: https://www.celiac.com/forums/topic/114895-robinson-crusoe-and-the-lost-isle-of-gluten/#comment-960940 I think there are others on this board however who are better placed to help you with that.  Good luck!

 

[jonked]

There are lots of similarities between our stories, though I've generally avoided doctors. I also used drink (and drugs) a lot to cope with the symptoms which I thought was just depression / anxiety and a general lack of coping skills.  

There's a particular bit in your Robinson Crusoe thread which rings true for me about you finding it difficult to know who you are, what is you and what is the disease and the coping strategies? I have come to the quite shocking revelation that some aspects of my personality, that I thought were at the core of who I am, were hugely influenced by gluten. Perhaps I'm not really that pessimistic, cynical person that I was for decades? 

My hangovers were also a delight once I stopped drinking beer - but that phase passed after about a year and now anything more than a few pints seems to wreck my system. I think it's a combination of affecting my sleep and causing some kind of internal inflammation, it almost feels like a mini-glutening (doesn't last anywhere near as long though). My theory is that I'd probably be fine if I could manage to let my insides heal properly but every 4 weeks or so and bang, back to square one. I do think that stopping for a few months might be the only answer to keeping healthy though. 

Agree completely about the 'strange attraction to gluten' - I ate so much bread and drank so much beer before I realised. It was beer that was the big revelation in the end - I had a terrible hangover after a night drinking Erdinger alcohol free wheat beer, and realised that it really didn't make sense... Even now, when I am glutened, in the days shortly after I crave wheaty sorts of products - I find myself stuffing myself with gluten free bread and cakes (not the best thing to heal yourself I know), it's like it triggers a craving for more poision. 

Anwyay, today is my fifth day feeling rough - but it looks like finally the bloating is going down so fingers crossed I will feel better tomorrow and able to start again, hopefully I can get through the summer with no more glutenings!

[Jmg]

 

 I have come to the quite shocking revelation that some aspects of my personality, that I thought were at the core of who I am, were hugely influenced by gluten. Perhaps I'm not really that pessimistic, cynical person that I was for decades?  

Yep, ditto. It's take it's toll on self esteem, relationships etc. To the point where I don't much like my pre gluten-free self for seeing the world through a prism of negativity and cynicism, although I guess I should forgive him   I'm now trying to process all this so I can get on with my life, but it's been a rough couple of years and sadly I was, depression notwithstanding, happier, though far less healthy when I was ignorant of all this. I miss being able to go out for the night, eat and drink whatever I wanted, not give a second thought to it. etc.

 

 My theory is that I'd probably be fine if I could manage to let my insides heal properly but every 4 weeks or so and bang, back to square one. I do think that stopping for a few months might be the only answer to keeping healthy though.  

It sucks, but as I understand it, for our bodies this isn't something where being 95% or even 99% of the way there is sufficient. This is where, although I completely understand the reasoning, that your going untested may be dangerous and long term more harmful to you than a challenge.  For Coeliacs, a once a month glutening as you're currently experiencing is, literally, lethal:

“Death was most significantly affected by diagnostic delay, pattern of presentation, and adherence to the GFD…Non-adherence to the GFD, defined as eating gluten once-per-month increased the relative risk of death 6-fold…Our results emphasize the need for prompt diagnosis and treatment also in those patients with a minor or symptomless form of coeliac disease”

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I had a negative endoscopy and still suspect I'm coeliac, but the testing wasn't without an upside. At the end the GE sat me down and told me to avoid gluten for life based on my reaction to the challenge and made a note of it in my medical records.  I had my challenge diary to confirm cause and effect and those around me could observe the impact so I had more validation for my diet choice. 

After the challenge I felt lousy so I was down to the butchers for marrow bones for broth and stock. I ate probiotics, made sauerkraut etc to try and heal. I avoided gluten-free processed treats and I stopped drinking to give myself a chance to heal and just didn't start again. That craving lessened once gluten was out of the picture.

You're pretty certain to be either coeliac or ncgi. It comes down to whether you can be as strict as you potentially need to be without the validation of a diagnosis? 

 

[deb-rn]

When you are drinking, is it beer?  It's got gluten in it, unless specially made and labelled as gluten-free.  Some people react to the gluten/wheat in alcohol too.  I take my own food when going to other people's houses.  ALWAYS!  If I go visit the grandchildren for a few days, I cook and take all necessary ingredients.  When eating out, I don't just pick something on the menu that LOOKS safe, I specify what I need and what they need to leave out.  If it comes out wrong, I send it back.  I  WILL NOT  suffer needlessly!  There are plenty of ways to accidently get glutened, but I eliminate as much as I can.  Just not worth the pain!

Debbie

[jonked]

15 minutes ago, deb_rn said:

When you are drinking, is it beer?  It's got gluten in it, unless specially made and labelled as gluten-free.  Some people react to the gluten/wheat in alcohol too.  I take my own food when going to other people's houses.  ALWAYS!  If I go visit the grandchildren for a few days, I cook and take all necessary ingredients.  When eating out, I don't just pick something on the menu that LOOKS safe, I specify what I need and what they need to leave out.  If it comes out wrong, I send it back.  I  WILL NOT  suffer needlessly!  There are plenty of ways to accidently get glutened, but I eliminate as much as I can.  Just not worth the pain!

Debbie

No I don't drink beer unless gluten-free. Although my story sounds as though I'm constantly taking risks actually I do completely as you say, I spend half my time cooking food to take with me in advance. The last time I was out for the day on a long hike, I took loads of food with me but we ended up in a pub. If it had just been me I'd have left earlier because I was getting hungry but I was a bit stuck having to do what everyone else wanted to do. Someone bought the crisps, I was starving and I stupidly thought that 'made in a factory that also contains gluten' probably meant the risk was minimal. If I'd have been sober I probably wouldn't have made that judgement... That's what I'm finding so frustrating, I'm trying SO hard to avoid gluten but somehow once a month I screw up. 

On 05/06/2016 at 8:48 AM, Jmg said:

It sucks, but as I understand it, for our bodies this isn't something where being 95% or even 99% of the way there is sufficient. This is where, although I completely understand the reasoning, that your going untested may be dangerous and long term more harmful to you than a challenge.  For Coeliacs, a once a month glutening as you're currently experiencing is, literally, lethal:

I think you misunderstood - I'm really not trying to hit just 99%, what I meant was that I think I could be ok drinking alcohol once I was properly healed - I think my repeated glutenings are part of why alcohol causes me problems (other than the problem of stupid judgement!) . The stuff about the potential danger of repeated glutenings is a wake up call though, thanks. I think I am going to go back to my GP and perhaps start planning for doing a challenge - however I think I'd need to save up a fair bit of money first and also wait until after the summer as I'm going to be away a lot. 

[Caroles]

I had an endoscopy done in March and it came back definite for coeliac. Prior to this in 2008, I had acid reflux so bad I ended up get the fundoplication surgery for GERD. No more heartburn for me after that so it thought I could eat anything I wanted. For the last two years I suffered bouts of Diarrhea and finally went to the Dr. and bam,,,full blown inflammation.

I like to drink to. I think I like it because I have trouble sleeping. I had to give up beer and now I drink wine or certain vodkas that are gluten free (Tito's which is super expensive) and Smirnoff. I also get anxious and bored so I think that is another reason I drink.

Also, I don't eat red meat or pork at all. Nothing that walks on 4 legs. I have been trying following a Mediterranean diet but I'm not losing weight. I do know that I have to cook at home mostly and just eat whole foods. I hate going out to dinner, asking for a gluten free menu or eating salads all the time. I am better off cooking at home. I take a real good probiotic and it seems to help.

[Jmg]

1 hour ago, jonked said:

I think you misunderstood - I'm really not trying to hit just 99%, what I meant was that I think I could be ok drinking alcohol once I was properly healed - I think my repeated glutenings are part of why alcohol causes me problems (other than the problem of stupid judgement!) . The stuff about the potential danger of repeated glutenings is a wake up call though, thanks. I think I am going to go back to my GP and perhaps start planning for doing a challenge - however I think I'd need to save up a fair bit of money first and also wait until after the summer as I'm going to be away a lot. 

Ah sincere apologies! I did worry if I was a bit preachy in that last post, it wasn't my intention, particularly as I said before I'm not exactly a poster boy for dealing with this myself...  

No reason why you shouldn't be able to drink. There's plenty here who are fine with alcohol and I haven't discounted a return to it, especially on days like this when the pub looks tempting. If you wanted to try and heal the gut though it may be worth having either some time off it or reducing intake?

I guess one other thing you could do would be to ask your mates to look out for you should a similar situation occur? If they know that you you just can't cheat they may save you from a bad choice or at least think twice about offering you the crisps, suggesting the curry house etc.?  

If you do the challenge keep a food diary before during and after, what you ate and how you feel. It's really helpful, especially if the brain fog descends, because it's a lot more bearable when you can link it to the challenge. You become your own science project  Do post on here also so you can get some moral support or advice on how to cope with it. 

[Jmg]

2 hours ago, Caroles said:

I had an endoscopy done in March and it came back definite for coeliac.  

Welcome Carole  You may want to start a new topic if you need any advice. Otherwise, you have found a great site. 

[jonked]

2 hours ago, Caroles said:

Also, I don't eat red meat or pork at all. Nothing that walks on 4 legs. I have been trying following a Mediterranean diet but I'm not losing weight. I do know that I have to cook at home mostly and just eat whole foods. I hate going out to dinner, asking for a gluten free menu or eating salads all the time. I am better off cooking at home. I take a real good probiotic and it seems to help

I'm mostly vegan Carole though I am flexible when I eat out or when stuck - eg when I can only get gluten free bread with egg in it. I used to eat out all the time and when I first went gluten-free I just thought it would be ok if I chose the right thing but now I've gradually reduced the places I trust so I eat out hardly at all and I won't trust my friends at all, which really pisses some of them off but it's not them that has to go through this. I'm finding days out really stressful, the amount of thinking beforehand and preplanning I have to do takes all the fun out of things. I get bad acid reflux too - better since I went gluten-free but still awful from alcohol. 

34 minutes ago, Jmg said:

No reason why you shouldn't be able to drink. There's plenty here who are fine with alcohol and I haven't discounted a return to it, especially on days like this when the pub looks tempting. If you wanted to try and heal the gut though it may be worth having either some time off it or reducing intake?

I have a rule of no alcohol for at least 2-3 weeks after a glutening, because I really notice that it makes me bloat (nothing like a gluten bloat though) and gives me acid reflux so am sure it can't be helping. I think I probably need to make it longer though. I know plenty of celiacs drink wine etc no problem but the acidity of wine and cider really don't agree with me. 

36 minutes ago, Jmg said:

I guess one other thing you could do would be to ask your mates to look out for you should a similar situation occur? If they know that you you just can't cheat they may save you from a bad choice or at least think twice about offering you the crisps, suggesting the curry house etc.?  

I think my partner is now realising that I really cannot take any risks at all. Usually it is him saying things like 'but you were ok from that curry place last time' not really realising that every time is a massive risk even if some times were fine. I think I'm finding this so hard because I really thought I'd got it sussed - I quite enjoyed being gluten-free to start with, I found discovering new foods and ingredients a lot of fun and I didn't really find it difficult at all. It's the cross contamination issues that have turned food into a constant stress.