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8 Months Gluten Free... Now What?
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While I'm overall feeling better, I'm still having a lot of off days. My primary symptoms have always been stomach/digestive related (bloating, nausea, that kind of thing). For a good little while over the summer, I had my diet perfectly figured out. I was grilling a lot of fresh meats and fish, and eating a lot of fresh veg and I felt pretty damned good. Now though, it's starting to get worse again.

I live in Michigan, so the cold weather doesn't come all at once, it comes in bi-polar spurts, where it's 60 degrees and sunny one day and 30 degrees, cloudy and threatening to snow the next. Ever since this weather pattern has set in, I've had to modify my diet a little bit, and while I'm still gluten free, I was still feeling off. I went from all digestive symptoms, to digestive symptoms with body aches, feeling constantly ran down and just overall wore out. I thought at first I was just getting sick, but after 5 days of feeling the same, and nothing else, I figured it was diet related.

I kept a food diary, and traced it down to lack of iron, which I know is a huge problem for people like us. I just started adding more iron back this week, in form of more meats, nuts and leafy greens. I'm a guy so a supplement just didn't seem like a good idea. I woke up this morning, and the body aches were next to nothing, but my digestive symptoms were horrible. They subsided, but are still there, just minor enough to where I can function.

Has anyone else went through this, or anything similar? Any suggestions or encouragements? I really need something at this point. With Thanksgiving next week, the last thing I need to is feel like I do now...

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josh, If you haven't already get your VITAMIN levels checked and remove the guesswork... I had many GI issues that were resolved by being treated for H PYLORI, removing dairy from my diet and correcting my very low VITAMIN D level(14. something).. I'm not sure that the VITAMIN D helped the GI issues, but my aches & pains faded away.. I did lose 50lb over the last 8 months and just need to lose 11 more to reach the top end of my BMI..

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I agree, you should get your vitamin levels checked. I live in Michigan also, I found in April I had low vitamin D (17) and by July I had it corrected to 55...but she said because we are in Michigan the sun starts to die down in September, so July is one of the peak months for Vitamin D levels, so inorder to maintain my level I was going to have to continue to supplement at the high level year round...

So my point being, your lack of energy...etc coincides with the lower amount of sunlight to make Vitamin D in Michigan. You should definitly go get checked out.

I feel extremely exhausted and have difficulty losing weight when my vitamin D is low.

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I had debillitating fatigue with joint ache three years ago - prior to coeliac diagnosis. I eventually went to G.P. when it got to the point I just wasn't functioning. My ferritin (iron) levels were done to four! I started to feel the same way last November but decided, foolishly, to wait until after Christmas holidays in case I just needed to rest. You can tell that fatigue makes me completely irrational! My iron was okay this time and GP was less than helpful. To cut a long story short, eventually went to another GP who run tests for iron, thyroid, B12, folates, diabetes, Vits A & D and coeliac. As well as being coeliac, I was also deficient in Vit D.

I would strongly advise you to get your levels checked.

And what's this about supplements not being a good idea because your a guy - I think bodybuilders take more supplements than most folk so nothing unmanly about it. :D

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You should get your vitamins checked. When i got diagnose with celiac i had to get iron iv at hemotligist because my intestents are so damaged that the pills did not absorb like they are supposed to. I will be going back soon to see about more.

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I'm only going on 4 months gluten-free but I have been feeling the same as you for about the last 2 weeks or so; stomach, big D, tired muscle aches and feel like I'm just not functioning at 100%. I thought it was due to getting the flu shot but it has just lasted too long. I'm thinking that either I'm getting cc somehow, or maybe like everyone else is mentioning it's my vitamin d level. I had most everything else checked by my gastro at the end of september and it didn't look too bad. I'm gonna try taking vitamin d again and see how that goes...

keep us updated

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Hi Josh,

well, here's some encouragment, you aren't dead yet! :D

Vitamins are good things to check. I am taking some extra Vit D now myself. Another thing to consider is possible additional food intolerances. Sometimes we collect them as we go along. Thyroid is another possibility.

Too much iron for men is a thing to watch out for I suppose. We don't need as much as women do. After all, if you are made of iron why take more of it every day? :D LOL.

I figure you are on the right track, it is most likely something you are consuming. There are a lot of possibilities there though, besides gluten. And other food intolerances can cause substantial symptoms themselves.

It seem to me like reactions get worse over time, as if they build up. So if you are eating a food that causes a small problem but it accumulates more every day you eat it. it could get to be majorly annoying after awhile. So seemingly small things can add up. Just some random thots in case they help. An elimination diet is a good way to find additional food intolerances.

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If you are taking extra iron that will slow transit time in the bowel, which for a healing gut is not such a great thing. Ideally you want the transit time to be about 12-24 hours max. Perhaps you could take something like ACV to keep things moving, just a tablespoon a day should do if you're not sensitive. Totally identify with the difficulty in balancing things. As another poster suggested it would be a good idea to get a full blood/vit/mineral panel done to be sure

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I live in Michigan, so the cold weather doesn't come all at once, it comes in bi-polar spurts, where it's 60 degrees and sunny one day and 30 degrees, cloudy and threatening to snow the next. Ever since this weather pattern has set in, I've had to modify my diet a little bit, and while I'm still gluten free, I was still feeling off. I went from all digestive symptoms, to digestive symptoms with body aches, feeling constantly ran down and just overall wore out. I thought at first I was just getting sick, but after 5 days of feeling the same, and nothing else, I figured it was diet related.

How did you modify your diet? Did you start eating more dairy, soy, or corn? More processed foods? A lot of us are sensitive to dairy. Soy is probably the next most common intolerance and some folks are sensitive to corn. Processed foods are always a CC risk so those can be a problem too.

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I'll echo the others as far as getting your vitamin levels checked, but I'd also suggest you find either an ND or an MD who is nutrition focused and get all your trace minerals checked as well.

As far as foods, if you can eat it, organic,grass-fed beef liver or organic,free-range chicken liver are two of the most nutritionally dense foods on the planet. The only thing that isn't in them that we need as far as vitamins and minerals is vitamin C. The What's in the Food you Eat tools can be extremely helpful. It will give you the exact breakdown of the composition of many thousands of foods.

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    • Depression / anxiety issues
      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
    • Depression / anxiety issues
      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 shit 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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    • Depression / anxiety issues
      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
    • Depression / anxiety issues
      G'day Chris 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   Matt
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