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Hi all 

10 weeks ago i was diganoised with celiac with blood work and a endoscopy. I have had the worst 2 years of my life that started with blood being in my stool everyday. I have always suffered with anxiety for as long as I can remember but I always just pushed trough it. I then I started having panic attacks, insomnia and major depression that I could not handle, I could not function, I lost my job because I could not leave my bed, I shaked as I lay in bed everyday uncontrollably. I met with a doctor who put me on lexapro (antidepressant) I finally gave in after 6 months and started taking them, they made me worst than I already was so I had to stop after 14 weeks. Fast forward to 15 months later and the symptoms still persists including the bloody stools, I was in and out of hospital every week and told I had all sorts of conditions, then the blood work and endoscopy Finaly discovered the celiac. I have been on the diet now for 10 weeks, the first week my anxiety went away, the horrible knot in my stomach that I have had everyday, the hot flushes, the tingling I had run trough my legs. This all left but only for a couple of days then it came back, the depression also lifted but has now came back, I have been more than strict with the diet, I check everything twice before I eat it, me and the misses have thrown away everything from our kitchen and replaced it with new things. I had my Vitiam levels checked and I'm deficient in b12, Vit D, all B vitiams. It's like one step Foward 2 steps back in tearms of healing, I know these anxiety / depression feelings are not me but I've had them for so long that I can't seem to see light at the end of the tunnel. The couple of days that they left me when incredible I felt human and alive. Just wondering if any of this has happened to anyone else with celiac or gluten intorlance. Any advice or hope In tearms of healing or am I to feel like this for the rest of my life (I'm 28) by the way. Thanks a lot   

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6 hours ago, ChrisMelbourne said:

I know these anxiety / depression feelings are not me but I've had them for so long that I can't seem to see light at the end of the tunnel. The couple of days that they left me when incredible I felt human and alive. Just wondering if any of this has happened to anyone else with celiac or gluten intorlance. Any advice or hope In tearms of healing or am I to feel like this for the rest of my life (I'm 28) by the way. Thanks a lot   

G'day Chris :P and welcome to the forum. :)

You have found what I think is the single best resource on the web for advice, support and understanding for this condition. There is so much info here it's difficult to know where to start, but that's what this thread is for, please check it out. I think I got the recommendation for 'Real life with Celiac Disease' by Dennis and Leffler there, I'll second that, there's a lot of very useful info in there which helps to answer a lot of your questions. May be useful for your partner also. Chapters are short and informative so you can dip in and out. 

There will doubtless be more advice to come from others with more experience but there's a few things which occur. Firstly, 10 weeks is very early days. Your body has been under an assault for many, many years. Your immune system has been working overtime and like so many others you've only reached diagnosis after reaching a crisis point. You are now healing but it won't be instant and it won't be without ups and downs, speedier and slower phases. 

Second, being strict on gluten is essential, but it's only one part of the puzzle. You also need to eat really healthily and try to heal your gut. As you remove gluten you may find that your body starts telling you that other foods are also an issue. Don't panic, it doesn't mean that will always be the case. But you need to approach the next 6 months as a period where you're giving your body the easiest ride possible. That may mean taking probiotics, bone broths or it could also mean avoiding dairy or other foods, at least until your body has had a chance to heal. If you think you may still be getting gluteny effects keeping a food diary, noting what you eat, when and how you feel would help to track down any further issues. 

I too battled through the anxiety, had an all too brief moment of bliss as the diet kicked in, then faced a bumpier recovery period in the weeks that followed. It gets easier but it's still difficult for me from time to time. I tried to articulate some of this recently here, it's a long read but maybe some of it will strike a chord.

It will get better and you will become better equipped to deal with it. If you're like me you'll find other things getting better over time that you would never have thought to connect to gluten. Now, I've been exceedlingly nice here and not mentioned the England Rugby drubbing but I can feel my self control beginning to slip. So I'll leave it there :D

 

Matt

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Thanks for the advice Matt, I will be sure to take it all onboard. It's really good to talk to others that have had similar experiences. I'm currently upping my b12 and also taking a additional (gluten free) multi and b complex, also omega 3s and Vitiam D3. I had been noticing small improvements that I forgot to mention in my previous post. I noticed that I fall asleep now much easier than before going gluten-free, I also have moments where my body feels more calm, then blood in my stool has stopped I haven't had any in 10 weeks. My mind was constantly fixated on negative thoughts for the past 2 years and they slowly began lifting from all day negative thoughts to maybe half a day of negative thoughts if that makes sense, but this pass week and a half they have come back, I'm also finding my self very nervous again around other people I'm hoping this will pass. The anxiety / depression is the worst symptom for me I would not wish it on my worst enemy, if that went away I would be the happiest man in the world. I found it very hard to talk to people about my mental health issues at work before I lost my job as I found some people stigmatise me and don't understand or really care, but I figure i don't need narrow minded people like that anyway, and as a man its hard to open up but my wife is very supportive and encouraging. Thanks again for the advice really apricate it

Edited by ChrisMelbourne

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43 minutes ago, ChrisMelbourne said:

 I'm currently upping my b12 and also taking a additional (gluten free) multi and b complex, also omega 3s and Vitiam D3.  

Excellent. The chances are your body won't absorb some of this however so get as many good B sources in your diet as possible in addition. Get some sunshine as well, I know it does rain sometimes in Melbourne but believe me on that score you do a lot better than the poms.  

45 minutes ago, ChrisMelbourne said:

  I had been noticing small improvements that I forgot to mention in my previous post. I noticed that I fall asleep now much easier than before going gluten-free, I also have moments where my body feels more calm, then blood in my stool has stopped I haven't had any in 10 weeks. My mind was constantly fixated on negative thoughts for the past 2 years and they slowly began lifting from all day negative thoughts to maybe half a day of negative thoughts if that makes sense

Try and note these positive things, it's so easy when you're down to forget them. There will be more to come. Imagine yourself climbing a mountain. There are points at which you have to travel laterally or even down in order to follow the right path but your overall trajectory is upwards. You're actually lucky to have found it now at 28 with so much time ahead for healing and enjoying the fruits of it. 

For me the gluten reaction is the initial cause of the depression but once that's removed it doesn't automatically lift like magic. Whilst the brain fog lifted soon on gluten-free diet, (there was a physical perceptible feeling in my head whilst I had that, a kind of thickness sort of like wearing a diving mask all the time that distances you from the world), the longer term depression isn't so easily shifted. I think this is because there are negative pathways that have been reinforced over many years. That's what living in a constant state of anxiety can do. It wrecks your self esteem which isn't magically repaired as your diet changes, sadly! As my physical symptoms lifted but I still felt depression, if on a different level, I realised I'd have to heal my mind as well as my gut. So I'm currently seeing a counsellor and it is helping. Not there yet though :)

53 minutes ago, ChrisMelbourne said:

I'm also finding my self very nervous again around other people I'm hoping this will pass. The anxiety / depression is the worst symptom for me I would not wish it on my worst enemy, if that went away I would be the happiest man in the world. I found it very hard to talk to people about my mental health issues at work before I lost my job as I found some people stigmatise me and don't understand or really care, but I figure i don't need narrow minded people like that anyway, and as a man its hard to open up but my wife is very supportive and encouraging.

Yes I also get this and the mental side for me is also by far the worst side of it. I used to think I may die every time I got the chest pains but that wasn't as bad as feeling like s$#& 24/7 or having to fake a good time when feeling awful inside.  The single best thing about realising my gluten problem was that it explained that the underlying cause of that depression and anxiety was physical, not a defect of character, just some bad luck in the makeup of my gut and immune system. Hope that knowledge helps you also, when the anxiety strikes recognise it for what it is. A misdirected fight or flight response to an internal attack on your body. 

Have a look at some cognitive behavioural therapy techniqes for challenging negative thoughts, that may be helpful? CBT has a very good success rate here in UK, better than anti depressants or talking therapy I think and it focuses on the practical,. 

As you realise there's a load of bulls**t in society about how we view and discuss mental health. Don't buy into it. A lot of 'strong' people out there are simply bottling up their suffering through misguided pride. If people stigmatise you they're doing you the favour of letting you know they're not worth bothering with. 

I got a lot of support on here when I was in your position and I'm sure you will too. I wish you the best of luck and I'm sure you'll be seeing more improvements in the weeks and months to come. :) 

 

 

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i am wondering if those who get that initial "rush" of a day or twos relief of symptoms are "flying" on adrenaline?  wonder about adrenal fatigue?  not sure that is considered a real thing in western medicine... just a thought.  and you return of sym suggest a glutening.  Anything new in the diet?  even a new package of an already  checked product?  soap and shampoo need to be checked, or used very carefully.  is wife still eating gluten?  if so make sure sh is not bringing it to you.  kisses are nice, but make sure she brushes first, lol

skipping products that are "made in shared buildings"  for at least a while.

take the B12 on an empty stomache

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1 hour ago, frieze said:

i am wondering if those who get that initial "rush" of a day or twos relief of symptoms are "flying" on adrenaline?  wonder about adrenal fatigue?  

I definitely had more energy, I was virtually bedridden beforehand, but it also felt like something of a serotonin boost, and, bizarre as it sounds, my senses seemed heightened. I felt great and I didn't know why. 

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1 hour ago, frieze said:

i am wondering if those who get that initial "rush" of a day or twos relief of symptoms are "flying" on adrenaline?  wonder about adrenal fatigue?  not sure that is considered a real thing in western medicine... just a thought.  and you return of sym suggest a glutening.  Anything new in the diet?  even a new package of an already  checked product?  soap and shampoo need to be checked, or used very carefully.  is wife still eating gluten?  if so make sure sh is not bringing it to you.  kisses are nice, but make sure she brushes first, lol

skipping products that are "made in shared buildings"  for at least a while.

take the B12 on an empty stomache

Pretty sure that's what I had for a while, adrenal fatigue.  I started getting some selenium in my diet to fix it.  It made a big difference.  Brazil nuts are great for selenium, just don't overdo them because selenium isn't eliminated quickly.  It can build up to toxic levels if overdone.

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2 hours ago, Jmg said:

Excellent. The chances are your body won't absorb some of this however so get as many good B sources in your diet as possible in addition. Get some sunshine as well, I know it does rain sometimes in Melbourne but believe me on that score you do a lot better than the poms.  

Try and note these positive things, it's so easy when you're down to forget them. There will be more to come. Imagine yourself climbing a mountain. There are points at which you have to travel laterally or even down in order to follow the right path but your overall trajectory is upwards. You're actually lucky to have found it now at 28 with so much time ahead for healing and enjoying the fruits of it. 

For me the gluten reaction is the initial cause of the depression but once that's removed it doesn't automatically lift like magic. Whilst the brain fog lifted soon on gluten-free diet, (there was a physical perceptible feeling in my head whilst I had that, a kind of thickness sort of like wearing a diving mask all the time that distances you from the world), the longer term depression isn't so easily shifted. I think this is because there are negative pathways that have been reinforced over many years. That's what living in a constant state of anxiety can do. It wrecks your self esteem which isn't magically repaired as your diet changes, sadly! As my physical symptoms lifted but I still felt depression, if on a different level, I realised I'd have to heal my mind as well as my gut. So I'm currently seeing a counsellor and it is helping. Not there yet though :)

Yes I also get this and the mental side for me is also by far the worst side of it. I used to think I may die every time I got the chest pains but that wasn't as bad as feeling like s$#& 24/7 or having to fake a good time when feeling awful inside.  The single best thing about realising my gluten problem was that it explained that the underlying cause of that depression and anxiety was physical, not a defect of character, just some bad luck in the makeup of my gut and immune system. Hope that knowledge helps you also, when the anxiety strikes recognise it for what it is. A misdirected fight or flight response to an internal attack on your body. 

Have a look at some cognitive behavioural therapy techniqes for challenging negative thoughts, that may be helpful? CBT has a very good success rate here in UK, better than anti depressants or talking therapy I think and it focuses on the practical,. 

As you realise there's a load of bulls**t in society about how we view and discuss mental health. Don't buy into it. A lot of 'strong' people out there are simply bottling up their suffering through misguided pride. If people stigmatise you they're doing you the favour of letting you know they're not worth bothering with. 

I got a lot of support on here when I was in your position and I'm sure you will too. I wish you the best of luck and I'm sure you'll be seeing more improvements in the weeks and months to come. :) 

 

 

Thanks for replying, I have not yet tried Cbt, I did meet with a psychologist for 2 months when I was really in the deepest depths of depression but it didn't really help, I couldn't concentrate at all during our sessions my anxiety and negative self talk was trough the roof at the time, and after loosing my job I could no longer afford the $150 sessions, I don't have medical insurance as I am currently waiting on my permanent residence visa to come tru ( originally from Northern Ireland) I might look into some Cbt sessions to see if they help, I'm willing to try anything 

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17 minutes ago, GFinDC said:

Pretty sure that's what I had for a while, adrenal fatigue.  I started getting some selenium in my diet to fix it.  It made a big difference.  Brazil nuts are great for selenium, just don't overdo them because selenium isn't eliminated quickly.  It can build up to toxic levels if overdone.

Funny enough that a naturopath at a mind & body convention that I attended last week said I was also deficient in selenium. You put your finger into a small holder (Similar to having your heart rate checked) she said I'm deficient in b vitiams, selenium vitiam d, she also said Somthing about having a lot of mercury in my body, to be honest it all went over my head as yet another thing to deal with so I haven't looked much further into it as it was all just to much, I have a print out of the results that she gave me tho, I'm going to look into it. Thank you for taking your time to reply to this thread 

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The second link I gave you was to a series of online video courses, you can try those for free to see if its something you think might help. There are also a lot of worksheets you can download, the first link had some I think but there are plenty of others out there if you search online.  Finally I had another look and found this: http://www.getselfhelp.co.uk/step1.htm  Which looks like a decent 7 step program :)

Obviously its not as good as a dedicated session with a CBT counsellor, but the above may give you some tools you can use, especially when your thoughts are spiralling into a destructive circle. You could also search to see if there's any group sessions in Melbourne, that's how the NHS delivers it, they would be cheaper and there's really no need for one on one CBT, because it's more about delivering knowledge of the toolset.

I approached it very sceptically but found it of some use, although at the time I was still under the gluten influence so it never tackled the root problem. The game changing aspect of discovering this is that you now know why the psychologist sessions didn't hit the mark, how could they when the root of your depression was your illness? My sessions now are far better and more enjoyable than when I was under a gluten fog. 

Aside from all this the other advice holds, eat well, exercise, get sunlight every day and the longer you're on the diet the better you should get.  Oh and at least NI put up a hell of a fight in the Euros, hope you got to see that down under!

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10 hours ago, ChrisMelbourne said:

Funny enough that a naturopath at a mind & body convention that I attended last week said I was also deficient in selenium. You put your finger into a small holder (Similar to having your heart rate checked) she said I'm deficient in b vitamins, selenium vitamin d, she also said Something about having a lot of mercury in my body, to be honest it all went over my head as yet another thing to deal with so I haven't looked much further into it as it was all just to much, I have a print out of the results that she gave me tho, I'm going to look into it. Thank you for taking your time to reply to this thread 

You are welcome Chris.  The vitamin D council site linked below has info on how much vitamin D we need and how much sun is needed to get it, what foods contain it etc.  Around my neck of the woods I can only get UVB rays (needed to make Vitamin D in skin) from 10 am to 2 pm.  So a food source or vitamin pill is a good option,  Especially in winter when you probably won't get any V-D from sun exposure.  Foods sources are mackeral, salmon, tuna and a few plants like spinach and kale.  You can find a review of various V-D brands on the labdoor website.  Some pills are useless so it pays to verify you are taking a good one.

http://www.vitamindcouncil.org/about-vitamin-d/

https://labdoor.com/rankings/vitamin-d

 

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Hi all. 

Still feeling the same way this past week. I'm thinking of dropping dairy starting from today, I don't know if I have a problem with it or not, but I drink 2 coffees a day with milk. I'm just constantly tired all the time, and getting trough the day is pretty hard, I noticed a couple of weeks ago that my sleep was improving but the last couple of days I have been waking up at least 3 times during the night, then when I get up in the morning it feels like I have been hit by a bus, like I haven't slept at all. I keep waking up during the night needing to drink water as I feel dehydrated, I don't know why as I drink 2-3 litres of water everyday 

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Hi Chris, haven't had a chance to read the whole conversation but regarding dairy, if you are suspicious of something, drop it for some time and see. You are still healing so maybe dairy is bothering you now. Also look at the nightshades, corn, dairy, soy, and eggs. I had a horrible time last year. I had muscle twitches, brain fog, pain, was tired,etc. I searched online and decided to drop all of those things I mentioned above. I am not sure what bothered me since I dropped them all at once but i slowly began feeling better. Now, i reintroduced eggs again and sometimes have lactose free milk with my coffee. I recommend eating salmon, tuna, bone broth soups, using olive oil and coconut oil and not eating much or not at all processed food even if it is marked gluten free.

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Anxiety was one of my biggest symptoms, but never realised it was connected to celiac until I went gluten free, I have been gluten free for 6 weeks now and like you I felt better then worse again. I was eating a lot of dairy, sugar, tomatoes  and processed gluten free foods.

I am now doing the autoimmune Paleo diet which has cut dairy, rice, corn, nuts seeds, coffee, nightshade and a few other foods for 6 weeks before reintroducing them one at time weekly and noting any symptoms, I will say this has made a dramatic difference to my anxiety levels they are 95% better. It takes some work ( making food from scratch, bone broth and healing foods, but it has made the biggest difference to my health so far. You can google the diet for more information but it's really helped me, the lady who wrote the book had both Celiac and autoimmune thyroid issues so it's written from this perspective. 

 

good luck

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Thanks for the advice everybody. I gave up dairy and soy 5 days ago and I have been going tru what feels like withdrawals (similar to when I gave up gluten) I feel like I have got the a really bad flu, migraines, bad Sinus, brianfog, and insomnia. I'm hoping this will soon clear up and I will feel better, I'm wishing I had gave them all up at the same time as I feel like crap now 

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Just a update of my symptoms. 

So I have been gluten free since April & dairy free since start of July. I went tru severe diary withdrawals that were quite similar when I first gave up gluten. I felt like I had the flu for about a month, heightened anxiety, difficulty breathing, constant headaches and very low mood & my teeth felt like they were going to fall out. This all

lasted for several weeks then subsided again. In the last couple of weeks I have noticed my anxiety has gone down from a 9 to about a 2.  Some days i feel so relaxed in social situations, that nervous tension that has lived with me my hole life seems to be almost gone, it's a strange feeling as I have never felt like this. My depression is up and down I will have a couple of good days then a couple

of bad days. Today I feel like s$#& and have bad D. 

Next month I will be 6 months gluten free and 3 months dairy free. Hopefully as I heal better days will come with no anxiety or depression. Still have a little brain fog and the loose stools I don't know why as my diet is clean as a whistle. 

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It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck

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On 9/22/2016 at 4:42 AM, ChrisMelbourne said:

Just a update of my symptoms. 

So I have been gluten free since April & dairy free since start of July. I went tru severe diary withdrawals that were quite similar when I first gave up gluten. I felt like I had the flu for about a month, heightened anxiety, difficulty breathing, constant headaches and very low mood & my teeth felt like they were going to fall out. This all

lasted for several weeks then subsided again. In the last couple of weeks I have noticed my anxiety has gone down from a 9 to about a 2.  Some days i feel so relaxed in social situations, that nervous tension that has lived with me my hole life seems to be almost gone, it's a strange feeling as I have never felt like this. My depression is up and down I will have a couple of good days then a couple

of bad days. Today I feel like s$#& and have bad D. 

Next month I will be 6 months gluten free and 3 months dairy free. Hopefully as I heal better days will come with no anxiety or depression. Still have a little brain fog and the loose stools I don't know why as my diet is clean as a whistle. 

Haven't been on for a little while but it's great to hear you're doing so well. Hope your remaining symptoms are also on the way out as you keep up the new diet. 

Good on'ya as they say down your way...

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It's good to hear things are going better Chris.  Six months is still fairly early in the gluten-free diet.  Things should be improving over the next few months.  It takes a while for the antibodies to decline and the gut to heal.  Stopping dairy helps many people because the tips of the villi make the enzyme lactase which digests dairy sugar (lactose).  Without the villi tips we don;t have lactase so can't digest dairy sugar.  That causes plenty of symptoms all by itself.  Many people regain the ability to digest dairy after a while healing but not all.

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