I am a coeliac and I can't stop eating gluten

[CloeG]

Hello everyone, 

I need a kick in the butt. I have struggled with my relationship with food my entire life. I was diagnosed a coeliac at 10 years old and I followed a pretty strict diet till I was 17 because I was living with my mum. After that, I moved by myself and I started struggling with money and paying everything off. I started buying gluten products because they were cheaper but then it became a vicious circle where I would eat gluten, feel bad for eating gluten and eat more gluten. I have developed osteoporosis, vitamin D deficit and Hashimoto's thyroiditis. I am now 24 and I am genuinely scared because I want to be able to conceive soon and also I am terrified of going to the doctors to see the damage I have done to myself. I know I am killing myself but for some reason I cannot stop. It's almost like I live for that feeling of misery that comes after eating gluten. I don't know what to do. Please help. 

[cristiana]

Dear Chloe and welcome to the forum!

Firstly, I'd like to say well done for your honesty and for admitting you need help.  This is a really important first step, that you are no longer living in denial.

One thing I'd like to clear up - do you have an annual coeliac review?   I'm British and looking at your spelling of "coeliac" and "mum" I wonder if you too are in the UK.   If so, you should be able to have access to this via the NHS.   I find it very helpful - annually, I get to see a consultant who will monitor my bloods and keep me on the straight and narrow with my diet.  A few years ago it was discovered I was still showing high levels of antibodies and a gastroenterologist packed me off to a very good nutritionalist and we worked together to get to the bottom of my issues.  In my case I was trying to be compliant, but gluten was sneaking into my diet in various ways that we managed to identify and clamp down on.   

Personally, I think it is time to confess to your doctors that you really struggling but are determined to make a fresh start for the reasons you state.    They may even be able to support you with some sort of CBT to help you change the way you think about these issues.  Some hospitals provide local support groups for other coeliacs that you could join.

If you are in the UK, do join Coeliac UK as they have regional meetings for members.  I have never been to one before but they can be a real lifeline for those who are struggling, and book out entire restaurants to offer special gluten free lunches and dinners.   They also have a fab app that will help you find out whether something contains gluten or not when you are out shopping.

Also, do you have good understanding friends that can help you to be accountable in social situations or when you are out food shopping?  It would be good to chat to them.

One other thing - I would not be at all surprised if you are lacking certain vitamins and minerals which could be worsening cravings for glutenous food.   If you can be tested for deficiencies, that would be good, but in the meantime try to buy non-processed fresh produce and look for an excellent daily vitamin supplement to help boost your levels.   

I don't know if any of this helps, I am sure others on this forum will be better placed to give advice, but I do wish you well.

You will get a lot of support on this forum if you chose to hang around, so do come back to us at any time!

Cristiana

 

 

Edited September 29, 2021 by cristiana

[trents]

Gluten-free eating does not need to be expensive if you ditch the ready-made, processed gluten-free items you have been spending money on. Focus on buying fresh meats, fruits and veggies when in season and frozen when not. Avoid restaurants and eating out like the plague. When you are invited over by friends and family for a meal, bring your own food and host as many gatherings as you can so as to be able to control what goes into the foods that are served. Like Cristiana said, it sounds like you could use some education as to where gluten is found in the food supply; how it is included in things you would never suspect and how it is sometimes hidden in terminology. And like Cristiana said, I would advise you to start taking a high potency gluten-free multivitamin and I would add to that a high potency gluten-free B-complex. Add in some D3 and magnesium stearate. B vitamins are water soluble so there is really no danger in overdosing with them. You just pee the excess out. And it can be very true, as Cristiana said, that food cravings can be the result of deficiencies.

It also sounds like you could use some mental health support for the life-long struggle you have had in your relationship with food in general. A counselor can serve as someone who hold you accountable for your eating decisions.

You are quite young enough that if you start eating gluten free in earnest you will experience good healing in your body systems.

Are we doing a good job yet of kicking you in the butt?

Edited September 29, 2021 by trents

[Onegiantcrunchie]

On 9/29/2021 at 9:15 AM, cristiana said:

A few years ago it was discovered I was still showing high levels of antibodies and a gastroenterologist packed me off to a very good nutritionalist and we worked together to get to the bottom of my issues.  In my case I was trying to be compliant, but gluten was sneaking into my diet in various ways that we managed to identify and clamp down on.  

 

 

Hi cristiana. I was wondering if you'd share how gluten was sneaking in that you weren't aware of please? Trying to get to the bottom of my own recurring symptoms too right now!

[cristiana]

3 hours ago, Onegiantcrunchie said:

Hi cristiana. I was wondering if you'd share how gluten was sneaking in that you weren't aware of please? Trying to get to the bottom of my own recurring symptoms too right now!

Hi Onegiantcrunchie!
 

1.  Eating out.

Some coeliacs I know eat out without any issues, but I get glutened almost every time I eat out.  From the time that someone prepared a salad for me, and there were visible breadcrumbs in the lettuce (it had been prepared on a breadboard), to an honest mistake by the waiting staff: I ordered scrambled eggs with salmon, and it was served with two slices of bread (my daughter is more switched on than me and questioned the waiting staff, thank goodness).  

2. Vitamins and supplements

They can contain gluten, so be vigilant: for example, for some weeks I was taking Floradix iron supplement instead of Floravital - they are made by the same company, and their packaging is almost identical

3. Check with the gluten-free directory (Coeliac UK)

I seem to recall you may be British?  Coeliac UK have a food and drink guide - printed, and also available on line and as an app - and they include food that I believe is checked for compliance.  If you stick to this guide, you shouldn't go far wrong.

4. Shared oven/dodgy dishwasher

Naturally, I shared an oven with the rest of the family and I guess it wasn't very clean.  We also had a dodgy dishwasher that left residue on the plates (yuck!).   Both pieces of equipment needed replacing, so when we got our new oven the bottom oven became my gluten free oven;  the top oven is for glutenous food; the dishwasher has now been replaced by a Miele that does an extra clean water rinse at the beginning of each cycle.  Of course, this is an expensive way of addressing the problem.  If I'd had the oven cleaned and covered all my food that probably would have worked just as well; also, if our first dishwasher had actually worked properly and hadn't left a residue, or perhaps we rinsed our plates first, that would have worked equally well, I'm sure.

5. Beware the well-meaning cook who doesn't really understand

I've been glutened by people who tell me they know how to cook gluten free, then it turns out they don't really.  For example, there was the time someone gave me a delicious cookie baked for their son who avoided gluten (he wasn't a coeliac).  It had Smarties on it, which in the UK have gluten in them!   Or there was the time someone baked a cake for me,  going to great trouble, having thought that all Dove flour is gluten free.  Unfortunately, it isn't and she used their organic flour, not their gluten free flour, and I spent the night being extremely sick!

6. Beware badly labelled items

In the UK food labelling has really improved, thanks in part to Zoe's Law.   But I still find the "may also contain traces of gluten" can be unclear.  Make sure you read everything on the packet - often the "may also" bit can be some distance away from the main ingredients list, in small type.  

 

And lastly, do remember that your recurring symptoms may be to do with something other than gluten.  You may have IBS (I have that too) or perhaps gastritis. 

Or it could be another intolerance. Keep a food diary and see if there is a trigger.  Could be pure oats?  Or consuming dairy, for example? 

Also, remember some medication can cause gastric upsets and it is nothing to do with gluten, they would upset people without coeliac disease (such as, perhaps, NSAIDs, certain iron supplements, certain antibiotics etc).  

Anyway, Onegiantcrunchie, sorry for the long-winded reply, but I do hope it is of some help.

Cristiana

 

 

Edited February 13, 2022 by cristiana

[Onegiantcrunchie]

9 hours ago, cristiana said:

Hi Onegiantcrunchie!
 

1.  Eating out.

Some coeliacs I know eat out without any issues, but I get glutened almost every time I eat out.  From the time that someone prepared a salad for me, and there were visible breadcrumbs in the lettuce (it had been prepared on a breadboard), to an honest mistake by the waiting staff: I ordered scrambled eggs with salmon, and it was served with two slices of bread (my daughter is more switched on than me and questioned the waiting staff, thank goodness).  

2. Vitamins and supplements

They can contain gluten, so be vigilant: for example, for some weeks I was taking Floradix iron supplement instead of Floravital - they are made by the same company, and their packaging is almost identical

3. Check with the gluten-free directory (Coeliac UK)

I seem to recall you may be British?  Coeliac UK have a food and drink guide - printed, and also available on line and as an app - and they include food that I believe is checked for compliance.  If you stick to this guide, you shouldn't go far wrong.

4. Shared oven/dodgy dishwasher

Naturally, I shared an oven with the rest of the family and I guess it wasn't very clean.  We also had a dodgy dishwasher that left residue on the plates (yuck!).   Both pieces of equipment needed replacing, so when we got our new oven the bottom oven became my gluten free oven;  the top oven is for glutenous food; the dishwasher has now been replaced by a Miele that does an extra clean water rinse at the beginning of each cycle.  Of course, this is an expensive way of addressing the problem.  If I'd had the oven cleaned and covered all my food that probably would have worked just as well; also, if our first dishwasher had actually worked properly and hadn't left a residue, or perhaps we rinsed our plates first, that would have worked equally well, I'm sure.

5. Beware the well-meaning cook who doesn't really understand

I've been glutened by people who tell me they know how to cook gluten free, then it turns out they don't really.  For example, there was the time someone gave me a delicious cookie baked for their son who avoided gluten (he wasn't a coeliac).  It had Smarties on it, which in the UK have gluten in them!   Or there was the time someone baked a cake for me,  going to great trouble, having thought that all Dove flour is gluten free.  Unfortunately, it isn't and she used their organic flour, not their gluten free flour, and I spent the night being extremely sick!

6. Beware badly labelled items

In the UK food labelling has really improved, thanks in part to Zoe's Law.   But I still find the "may also contain traces of gluten" can be unclear.  Make sure you read everything on the packet - often the "may also" bit can be some distance away from the main ingredients list, in small type.  

 

And lastly, do remember that your recurring symptoms may be to do with something other than gluten.  You may have IBS (I have that too) or perhaps gastritis. 

Or it could be another intolerance. Keep a food diary and see if there is a trigger.  Could be pure oats?  Or consuming dairy, for example? 

Also, remember some medication can cause gastric upsets and it is nothing to do with gluten, they would upset people without coeliac disease (such as, perhaps, NSAIDs, certain iron supplements, certain antibiotics etc).  

Anyway, Onegiantcrunchie, sorry for the long-winded reply, but I do hope it is of some help.

Cristiana

 

 

Hi cristiana, thanks so much for the detailed reply!

My symptoms aren't actually gastric. What I get is this strange pale/blue tinge to my under eyes, lips and nails, that make it look like I'm either extremely cold or recently been short of oxygen.

Yes, I am British! I haven't had my annual follow up in 3 years now. I have to confess that because I haven't seen a doctor for so long about it, and also the fact that they wouldn't 'officialise' my coeliac diagnosis (cos it's based on 2 positive bloods, but no biopsy), I do go into some kind of denial about it from time to time and I start to be less careful.

The one about the friends cooking for you is really heartbreaking. There's just no polite way to say 'sorry but I don't think you managed it' is there!

Very surprised with the one about the oven, I always thought it's just making sure whatever you're eating is on a clean tray and that's all that matters.

I use the same washing up sponge as everyone else. I used to have my own years ago until others began using it and I realised someone will always end up using mine, even if I ask them not to. And no one cleans up breadcrumbs in my house.

Regarding your last point, I do eat the 'may contain' products all the time. I don't know why but I always suspected the label was really overused and more of 'covering our backs' thing by the manufacturer so I stopped taking it seriously (after all it seems to be on EVERYTHING over here) so now I ignore it. Although a few times I've been certain that one specific chocolate bar has glutened me.

But then again, all of this is so inconsistent. Sometimes I'm glutened, sometimes I'm not. But overall nothing has changed, I'm still in the same house, same workplace, eating the same foods.... it's a mystery. I'm hoping for a dietician referral too. In the last few years a bunch of foods have started to make my tongue swell on contact.. raw fruits, and walnuts (got an epipen for that). It's like the list of foods I can eat gets smaller every year.

Thanks so much for your reply, it's given me lots to think about

 

[cristiana]

3 hours ago, Onegiantcrunchie said:

Hi cristiana, thanks so much for the detailed reply!

My symptoms aren't actually gastric. What I get is this strange pale/blue tinge to my under eyes, lips and nails, that make it look like I'm either extremely cold or recently been short of oxygen.

Yes, I am British! I haven't had my annual follow up in 3 years now. I have to confess that because I haven't seen a doctor for so long about it, and also the fact that they wouldn't 'officialise' my coeliac diagnosis (cos it's based on 2 positive bloods, but no biopsy), I do go into some kind of denial about it from time to time and I start to be less careful.

The one about the friends cooking for you is really heartbreaking. There's just no polite way to say 'sorry but I don't think you managed it' is there!

Very surprised with the one about the oven, I always thought it's just making sure whatever you're eating is on a clean tray and that's all that matters.

I use the same washing up sponge as everyone else. I used to have my own years ago until others began using it and I realised someone will always end up using mine, even if I ask them not to. And no one cleans up breadcrumbs in my house.

Regarding your last point, I do eat the 'may contain' products all the time. I don't know why but I always suspected the label was really overused and more of 'covering our backs' thing by the manufacturer so I stopped taking it seriously (after all it seems to be on EVERYTHING over here) so now I ignore it. Although a few times I've been certain that one specific chocolate bar has glutened me.

But then again, all of this is so inconsistent. Sometimes I'm glutened, sometimes I'm not. But overall nothing has changed, I'm still in the same house, same workplace, eating the same foods.... it's a mystery. I'm hoping for a dietician referral too. In the last few years a bunch of foods have started to make my tongue swell on contact.. raw fruits, and walnuts (got an epipen for that). It's like the list of foods I can eat gets smaller every year.

Thanks so much for your reply, it's given me lots to think about

 

Hi Onegiantcrunchie

I'd prioritise another full coeliac panel as your blood test should tell you if gluten is getting in.  In the UK, since COVID, we've noticed on this board UK residents are reporting there is less emphasis on the need for an endoscopy for a formal diagnosis, so you may be able to finally get one (I think in part because of huge NHS waiting lists for endoscopies).

I do get dark blue rings under my eyes occasionally still, but before I was diagnosed it was so much more noticeable.  People remarked upon it - it almost looked like I was wearing dark rimmed glasses.   At least if you get a blood test you will know if gluten is a possible cause.

If gluten is getting in, I'd say the "may contain" issue is the other thing you really need to look into as a priority.  Coeliac UK recommend coeliacs contact manufacturers to ask exactly what they mean by "may contain".  It can mean different things.  

https://www.coeliac.org.uk/information-and-support/living-gluten-free/the-gluten-free-diet/food-shopping/food-labels/#:~:text='May contain' labelling&text=may contain traces of gluten,allergy due to manufacturing methods.

The oven issue for me I think was to do with the fact that our shared oven was a fan oven, so I think that gluten was possibly blowing about and being transferred in that way.  That said, it may not have been an issue at all, and I'm being a bit OTT, but I was that desperate to feel better I was willing to try anything.

I'm sorry that you are having tongue swelling issues.  A good friend of mine (not a coeliac) has this issue and it has been discovered that yeast is her issue.  It's an odd allergy, and it doesn't receive enough press, but how she found out was so see a private consultant in Surrey after getting absolutely nowhere on the NHS.  If you need his details (not sure where you live) I'll PM them to you.

Do come back to me if I can help further.  I'm not on the board much at the moment because of work but I'll keep an eye out for your posts.

Cristiana

 

Edited February 13, 2022 by cristiana

[Onegiantcrunchie]

7 hours ago, cristiana said:

Hi Onegiantcrunchie

I'd prioritise another full coeliac panel as your blood test should tell you if gluten is getting in.  In the UK, since COVID, we've noticed on this board UK residents are reporting there is less emphasis on the need for an endoscopy for a formal diagnosis, so you may be able to finally get one (I think in part because of huge NHS waiting lists for endoscopies).

I do get dark blue rings under my eyes occasionally still, but before I was diagnosed it was so much more noticeable.  People remarked upon it - it almost looked like I was wearing dark rimmed glasses.   At least if you get a blood test you will know if gluten is a possible cause.

If gluten is getting in, I'd say the "may contain" issue is the other thing you really need to look into as a priority.  Coeliac UK recommend coeliacs contact manufacturers to ask exactly what they mean by "may contain".  It can mean different things.  

https://www.coeliac.org.uk/information-and-support/living-gluten-free/the-gluten-free-diet/food-shopping/food-labels/#:~:text='May contain' labelling&text=may contain traces of gluten,allergy due to manufacturing methods.

The oven issue for me I think was to do with the fact that our shared oven was a fan oven, so I think that gluten was possibly blowing about and being transferred in that way.  That said, it may not have been an issue at all, and I'm being a bit OTT, but I was that desperate to feel better I was willing to try anything.

I'm sorry that you are having tongue swelling issues.  A good friend of mine (not a coeliac) has this issue and it has been discovered that yeast is her issue.  It's an odd allergy, and it doesn't receive enough press, but how she found out was so see a private consultant in Surrey after getting absolutely nowhere on the NHS.  If you need his details (not sure where you live) I'll PM them to you.

Do come back to me if I can help further.  I'm not on the board much at the moment because of work but I'll keep an eye out for your posts.

Cristiana

 

Thank you so much again for the lengthy reply! You're always extremely knowledgeable.

I'm a bit disheartened because I've just checked the website I usually get private blood tests done at and it looks like they've stopped doing the coeliac panels which means I'll have to go with the NHS only. I did ring my GP last week saying I've not been contacted for my coeliac review in 3 years and they told me they'd ring me back...

Since my post yesterday I've been reading around about 'may contain' labels and trying to find posts about it in the community and I've decided to be stricter with myself. I think I let it slide for so long because I feel that I have NO support in my personal life over my coeliac. But even I can see that something is wrong because it's been years since I'm 'off gluten' and yet my hair still is falling out and I still look like I've not slept in a week. So I'm going to be stricter now and only eat foods that I'm certain are clean.

Thank you for the idea of the consultant in Surrey. I'll keep an eye on my allergies for now - I did notice one spontaneously resolved (spring onion allergy) a few months ago and that was when I was experimenting with fasting. So I haven't lost hope on that front.

Thanks Cristiana

[cristiana]

1 hour ago, Onegiantcrunchie said:

Thank you so much again for the lengthy reply! You're always extremely knowledgeable.

I'm a bit disheartened because I've just checked the website I usually get private blood tests done at and it looks like they've stopped doing the coeliac panels which means I'll have to go with the NHS only. I did ring my GP last week saying I've not been contacted for my coeliac review in 3 years and they told me they'd ring me back...

Since my post yesterday I've been reading around about 'may contain' labels and trying to find posts about it in the community and I've decided to be stricter with myself. I think I let it slide for so long because I feel that I have NO support in my personal life over my coeliac. But even I can see that something is wrong because it's been years since I'm 'off gluten' and yet my hair still is falling out and I still look like I've not slept in a week. So I'm going to be stricter now and only eat foods that I'm certain are clean.

Thank you for the idea of the consultant in Surrey. I'll keep an eye on my allergies for now - I did notice one spontaneously resolved (spring onion allergy) a few months ago and that was when I was experimenting with fasting. So I haven't lost hope on that front.

Thanks Cristiana

My experience of the NHS has been very positive with Coeliac Disease, so I'd go for it if I were you - nothing to lose.  In fact, one NHS consultant spotted something that a private consultant of mine missed.

I'm sure that tightening up on "the may contains" should make a difference.  It is amazing how small amounts of gluten can add up over time.  On the hair shedding front, maybe ask for your iron levels to be checked.  That can be an issue.  Also, I've just started taking some specific vitamins for hair and my hairdresser says she can see the difference.  Something else that might help.

Keep us posted - I hope all goes well. 

It's nice to have another British Coeliac on board this forum.

C x

Edited February 13, 2022 by cristiana

[Onegiantcrunchie]

22 minutes ago, cristiana said:

My experience of the NHS has been very positive with Coeliac Disease, so I'd go for it if I were you - nothing to lose.  In fact, one NHS consultant spotted something that a private consultant of mine missed.

I'm sure that tightening up on "the main contains" should make a difference.  It is amazing how small amounts of gluten can add up over time.  On the hair shedding front, maybe ask for your iron levels to be checked.  That can be an issue.  Also, I've just started taking some specific vitamins for hair and my hairdresser says she can see the difference.  Something else that might help.

Keep us posted - I hope all goes well. 

It's nice to have another British Coeliac on board this forum.

C x

I'll def keep updating. Thanks again!

[ACEed]

Hi I am 14 and I was diagnosed with celiac disease when I was around age 7 and I can’t stop eating gluten, I really really try but I can’t. My mom and dad don’t believe me, and I feel really bad but I can’t help myself. I know I am killing myself and I wanna stop. But I don’t know how.

[trents]

Welcome to the forum, ACEed!

One thing you need to realize is that gluten is addictive in the same sense as are opioids. It interacts with the brain cells in the same way: https://justthrivehealth.com/blogs/blog/you-may-be-addicted-to-gluten Some people with celiac disease or NCGS (Non Celiac Gluten Sensitivity) experience withdrawal from gluten when they try to quit similar to what drug addicts do. One key is to stick it out long enough for phase to pass.

First, let me ask this. Are your parents still consuming gluten and is there food still containing gluten in your home?

Edited October 18, 2022 by trents

[knitty kitty]

@ACEed,

Welcome to the forum!

My heart goes out to you.  I do believe you.  I've had the same struggle.  And I know how painful not being believed can be.  {{{Hugs}}}  We believe you here.

What helped me was learning that gluten products are enriched with the vitamins and minerals that my body was craving.  

Celiacs have trouble absorbing enough nutrients.  Especially when our bodies are still in a state of inflammation caused by eating gluten.  The inflammation causes a greater need for vitamins.

Food manufacturers add vitamins and minerals to gluten containing flours.  

Gluten free facsimile foods are not required to be enriched with vitamins and minerals.  

The gluten free diet can be low in nutrients if foods are not chosen wisely.

Our bodies can crave certain foods that contain the vitamins that we need.  Our brain and gut talk to each other.  Seriously.  So, it's not really your fault if you crave gluten foods.  

It is your responsibility as a Celiac to learn how to get in on that conversation, to provide your body the nutrients it needs to function and grow.  You'll be growing until you're about twenty-three.  Now is the time to make sure you get enough calcium for your bones so you don't get osteoporosis later.  You want nice hair and clear skin.  Vitamins will help with that.  Learning about nutrition on your own and by talking to a nutritionist would be helpful.  Learning about which foods to choose to provide those vitamins can help you feel more assured that you can resist temptation.  (Learn about the Autoimmune Protocol diet.)

You want a car, right? Your body is your first car.  You fuel it right, make sure it's parked for eight hours every night, take care of it and keep it running.  Gluten is going to damage your engine and dent your fenders.  

You should ask your parents and doctor about supplementing with a B Complex to ensure you are getting those.  Minerals, like magnesium, calcium and iron, should be checked as well.  

Hope this helps!  

You can start a new thread if you have more questions. 

We're glad you're here!