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Extra Diet Restrictions For Healing?
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I'm reading a lot of info on how many Celiac's are not healing even on a gluten free diet. I am crazy cautious, strict and never cheat (of course that's because the first time I tried to it wasn't pretty!). Even after 3 1/2 yrs gluten free, I can't say I feel fabulous. When I was scoped my doctor told me that he didn't even need to wait for results because my villi were obliterated. So, I've read some stuff on trying to minimize Corn, Soy, dairy and other things in order to see if that helps. I'd love to hear from some people who started with a lot of damage and how long it took them to heal and diets/supplements that may have helped.

Thanks!

Scott

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I'm reading a lot of info on how many Celiac's are not healing even on a gluten free diet. I am crazy cautious, strict and never cheat (of course that's because the first time I tried to it wasn't pretty!). Even after 3 1/2 yrs gluten free, I can't say I feel fabulous. When I was scoped my doctor told me that he didn't even need to wait for results because my villi were obliterated. So, I've read some stuff on trying to minimize Corn, Soy, dairy and other things in order to see if that helps. I'd love to hear from some people who started with a lot of damage and how long it took them to heal and diets/supplements that may have helped.

Thanks!

Scott

I'm much newer to this than you. I've been gluten-free for 9mos. I've cut out most of the other top 8 allergens for now.

I take a lot of supplements to keep my vitamin/mineral levels up in the normal range as I'm healing. I also take digestive enzymes, and probiotics.

I would say it might be time to have your Dr. run a vitamin/mineral blood panel to see if there's anything you're low on? A good multi-vitamin, D3, fish oil, and B complex are good things to stay on with any sort of villi damage, and helps cover the basics. I will always take these..for the rest of my life. I also take L-glutamine which is supposed to help heal villi.

It can take years for damage to heal when it's severe like yours was. I was told mine was like yours..no microscope needed to see the damage.

I wish the Dr.s would be more knowledable about this. The ones I've seen seem to think we should heal immediately once we take away gluten, and that's all we need. :o I was even accused of cheating on the diet. My reactions are severe. There's no way I'm going to knowingly ingest gluten!

Best wishes to you. I hope you get some answers.

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Thanks for your thoughts. I've just started the glutamine per the advice of a friend who is a nutritionalist. I just had my bloodwork run yesterday, so I'm waiting for those results. How much of a difference do you notice with the enzymes or glucosamine...can you tell when you've forgotten them for a while?

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If you are in the USA, it may be worth your while to call up the companies making your gluten free foods to ensure that your food suppliers are being as careful about gluten as you are.

Here in the USA, there is no law currently regulating our gluten free food, so while some companies are very good about testing every batch of their gluten free products for gluten, some are not. A few companies do not test their products for gluten content at all. With no regulation, both testing and not testing are legal. There are also naturally gluten free grains, etc... that do not require testing, and a recent small study found some that were definitely gluten contaminated (one soy flour was over 100 times what most people consider a safe gluten free level: 20 ppm)

The study is no longer available on the web, but an article discussing it is:

http://www.suite101.com/news/celiac-disease-diet-study-many-gluten-free-grains-contaminated-a243716

If the companies meet your desired level of safety, have you looked at what else may enter your mouth? If you chew on your nails or ever lick your fingers, is your hand lotion gluten free? If you kiss anyone, or their skin (like little baby tummies), are the products on their lips/skin gluten free as well? That can be an issue.

And it sounds like you are already thinking about potential allergies/intolerances. Were you ever tested for any food allergies or intolerances? A good allergist who specializes in food allergies might be worth finding and arranging testing with - one who might be willing to do an elimination diet with you, too, so it can catch intolerances as well as allergies, you know?

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I ditto TH;s post. If you are having so many issues being minute with your checks will be worth your while.

Many of us DH/super sensitives have addition considerations: any other grains (corn, quinoa, some rice etc), sals ( google salicylate ((sals for short)) ) and iodine.

First step is going very basic - meat and vege and then after a couple of weeks add one thing at a time.

Keep a food diary .. it is very informative for problem foods/ingredients.

Seems hard work but is worth the time/effort.

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Thanks for your thoughts. I've just started the glutamine per the advice of a friend who is a nutritionalist. I just had my bloodwork run yesterday, so I'm waiting for those results. How much of a difference do you notice with the enzymes or glucosamine...can you tell when you've forgotten them for a while?

If I skip the enzymes I notice my food doesn't seem to digest very well. I don't usually notice when I skip other supplements other than I just feel more tired.

Hopefully, your blood test will show you if you need to supplement anything.

If those levels are fine, you may have to go with a food log to see if some other food is causing you trouble?

Good luck!

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Thanks everyone...I do try to do most of the things that you all have suggested. Although, chewing my fingernails is definitely a tough one to break. I am going to schedule an appt with a food allergist, but haven't done it yet. I've started off going Corn, Soy, Dairy, potato and gluten-free now just to see how that works. I pretty much just eat fruit, grain fed beef, and vegetables. I do have some alcohol (wine or spirits) and black coffee as well. I'm doing something similar to the GAPS diet to start. I don't know if it's overkill or not strict enough...any thoughts? Also, any recommendations on a safe/strong multivitamin...and do you double up if your damaged? I have been using Centrum Silver, but I don't notice any difference when I'm off of it.

One last question...metamucil???

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Thanks everyone...I do try to do most of the things that you all have suggested. Although, chewing my fingernails is definitely a tough one to break. I am going to schedule an appt with a food allergist, but haven't done it yet. I've started off going Corn, Soy, Dairy, potato and gluten-free now just to see how that works. I pretty much just eat fruit, grain fed beef, and vegetables. I do have some alcohol (wine or spirits) and black coffee as well. I'm doing something similar to the GAPS diet to start. I don't know if it's overkill or not strict enough...any thoughts? Also, any recommendations on a safe/strong multivitamin...and do you double up if your damaged? I have been using Centrum Silver, but I don't notice any difference when I'm off of it.

One last question...metamucil???

Did you mean "grain fed beef" or "grass fed beeef:? I eat only organic grass-fed, not just because of the grain but because of all the other junk that goes with it (including the hormones and antibiotics), and also my body screams at me if it is grain-fed :o I can't suggest a multi-vitamin because that alone is not enough for me. I do take one but it is in addition to lot of other supplements. Maybe why you don't notice much difference when you are off it.... Have you had your nutrient levels tested to find out what you might be specifically deficient in? Oftentimes we need prescription strength supplements to bring us back up to snuff. Things like D, B12, folate, magnesium, potassium, iron/ferritin. The Centrum Silver will not hurt you but it may not help a whole lot either for specific deficiencies -- it is more just a maintenance kind of dose.

If you are looking to add fiber to your diet in addition to what you are getting from your vegetables, psyllium husk is good - no additives.

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Grass fed! Oops!

I've never had those vitamin levels run, but I did just have my CBC done and I was at the edge of iron deficient. I'll give my doc a call and ask him for a script to run those.

Thanks for the input so far!

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Very soon I'll be financial enough to go 'grass' (not grain) fed meat eating. It will be a big step for me. "You are what you eat" must also apply to a cow??

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"You are what you eat" must also apply to a cow??

Very true in my experience. Oddly enough, I cannot tell what the pig or chicken ate, but I sure can pick a feedlot piece of beef from a green pastures one (and no, not just the flavour and consistency, but how my body reacts to it.)

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grain fed beef

if you want to get really serious you want to consider the "grain fed" anything. This week coming I am going to eat only lamb and pork as they tend to not be 'grain fed'. Grains tend to include wheat (etc) and although the "gluten-free" regulations consider these meats 'gluten free' it does not necessarily apply to super sensitives. (((This is only my opinion... no science or debate necessary)))

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I by no means consider myself to be a super sensitive when it comes to gluten, but I am super sensitive to a lot of other things. I always try to buy free range chicken and eggs, free range pork (not raised in sow crates), organic grass-fed beef, and ocean-fished salmon (I don't like the idea of fish eating sawdust and food coloring) :P I think the purer the food supply the better, But this is just trying to get the best quality protein available. I know that we cannot all eat this way, there is not enough pure food left in this world, but so long as I can afford to do it, that is my goal, because the other does affect me. And no, I will not bore you with the details of how it does, but it has a significant impact on my life. Being a Kiwi, our lamb and beef are naturally free range unless someone goes out of their way to make them not so, and with chicken you are taking your chances, although some producers here "proudly" announce they are selling "corn-fed" chicken. Thank goodness they do, so I can avoid it :D

Since I don't do corn or soy I don't have to worry about the GMO's there. I do worry about dairy. I guess I just close my eyes a bit when it comes to dairy, altlhough I do try to eat sheep and goat cheeses. Most New Zealand cows are grass grazed in summer but goodness knows what beyond silage they are fed in winter. :o I have some inklings but I try to turn a blind eye to that. You can't worry about everything or you will drive yourself nuts. Just do the best you can to eat clean.

Don't know the nutritive content of fingernails, but so long as they are clean :blink: they will probably at least not do you any harm. :D

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I am 4 1/2 years gluten-free and felt the same way. I kept wondering when I was going to feel fabulous, too. I am one of the super sensitive ones, too. I have also recently found out that I am super sensitive to soy. I knew soy made me sick, but I didn't worry about CC with it. Now I'm going to.

I did the Whole 30. If you don't know what it is, you can google it. Basically, it's no soy, dairy, alcohol, grains, or sugar for 30 days. It was difficult in the beginning, but after my stomach stopped hurting when I ate, it got a lot easier! Maybe for you, maybe not. But unfortunately, as my doctor told me, "once you're damaged by Celiac, you're damaged." Personally, I just can't handle the same foods as I could before, even if they're gluten-free. Or at least a large amount of them. It was also a learning experience for me, ie the soy thing. Maybe you don't need to do anything that drastic, but seems like you are heading in that sort of direction. Then after 30 days of elimination, it might be easier to figure out if it's one specific thing as you add them back in.

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Thanks Lizard...I looked at the diet online, and it's pretty similar to the Gap's diet which I am trying. Maybe a little more restrictive though. How long did it take on the whole 30 for you to feel better? And do you feel good? Or just better?

Shroom and di...thanks for the input...I am only eating the grass-fed beef and non-farmed salmon...haven't found any chicken I feel confident in.

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Thanks Lizard...I looked at the diet online, and it's pretty similar to the Gap's diet which I am trying. Maybe a little more restrictive though. How long did it take on the whole 30 for you to feel better? And do you feel good? Or just better?

Shroom and di...thanks for the input...I am only eating the grass-fed beef and non-farmed salmon...haven't found any chicken I feel confident in.

It took me about a week or 10 days, but then I went out to eat and even though I ordered specifically, and our server was also gluten-free, I ended up feeling pretty nasty for a few days. After that, I finally started feeling good. So maybe 15 days, which I attribute partially to the debaucle at the restaurant. Yesterday I made pizza for dinner and drank beer with it... today's been pretty rough. Lesson learned. But honestly, I finished the 30 on Friday and I felt great. I've eaten that way all today (I did have some potatoes) and plan on eating that way most of the time. Huge difference!

Hope you can figure it all out! I know how incredibly frustrating it can be.

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Hi there,

I was in a similar situation to you. I had "complete villous atrophy" on diagnosis and after 5 years of the normal gluten free diet, things had healed only very slightly. I was pretty much at my wits' end, especially when a bone scan came back showing osteopenia (aged 35) when I had used to be a junior internationl track and field athlete.

At that point I decided to try anything. So I basically followed the Specific Carbohydrate Diet but without dairy, as I know I am intolerant to dairy - probably casein, not lactose.

I did it for about a year, and eased off slightly at the end to stay as just grain free, dairy free and soya free. I then had a follow-up endoscopy and things had healed to almost normal (and boy, am I grateful, and hope it lasts).

So I really do think the SCD can help when nothing else is. Note too that I didn't take any probiotics, nor fermented foods, as I don't react well to either (although am starting to be able to tolerate them better now I think). I simply ate meat, fish, vegetables, fruit, nuts and seeds, although with no starchy veg at least for about 8 months. To help make it more bearable, as I am someone who needs carbs or feels terrible, I found the wonderful chestnut, as well as rutabaga and celeriac.

Feel free to email me if you wanted to ask anything about this. You will get there - it's just a case of trying so many different things I think. I also think this is not a diet to do forever as I think I am a tad salicylate intolerant now through sheer overdosing, but I think for a while it could serve a purpose.

Best wishes, Carolyn

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Hi there,

I was in a similar situation to you. I had "complete villous atrophy" on diagnosis and after 5 years of the normal gluten free diet, things had healed only very slightly. I was pretty much at my wits' end, especially when a bone scan came back showing osteopenia (aged 35) when I had used to be a junior internationl track and field athlete.

At that point I decided to try anything. So I basically followed the Specific Carbohydrate Diet but without dairy, as I know I am intolerant to dairy - probably casein, not lactose.

I did it for about a year, and eased off slightly at the end to stay as just grain free, dairy free and soya free. I then had a follow-up endoscopy and things had healed to almost normal (and boy, am I grateful, and hope it lasts).

So I really do think the SCD can help when nothing else is. Note too that I didn't take any probiotics, nor fermented foods, as I don't react well to either (although am starting to be able to tolerate them better now I think). I simply ate meat, fish, vegetables, fruit, nuts and seeds, although with no starchy veg at least for about 8 months. To help make it more bearable, as I am someone who needs carbs or feels terrible, I found the wonderful chestnut, as well as rutabaga and celeriac.

Feel free to email me if you wanted to ask anything about this. You will get there - it's just a case of trying so many different things I think. I also think this is not a diet to do forever as I think I am a tad salicylate intolerant now through sheer overdosing, but I think for a while it could serve a purpose.

Best wishes, Carolyn

p.s. - I ate grain fed meat all the way through this period, ie chicken, duck, turkey etc. I kind of figured that by the time you reach the muscle of an animal the grain has hopefully been thoroughly digested and reconstituted. I would not eat offal from grain fed birds, as I'm not so sure about that. I also now don't risk going anywhere near the skin, where I suppose it is possible grain feed may stick to the surface from the birds' environments. Plus I don't eat farm-fed fish as I know they are fed grain and soya, so this will all float around in the water and may cross contaminate I suspect. Good luck!

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Thanks Lizard and Carolyn.

Carolyn, I'm glad to see a that your had villous healing on the diet! How long did it take before you started to feel the benefit of the SCD?

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Hi there,

I was in a similar situation to you. I had "complete villous atrophy" on diagnosis and after 5 years of the normal gluten free diet, things had healed only very slightly. I was pretty much at my wits' end, especially when a bone scan came back showing osteopenia (aged 35) when I had used to be a junior internationl track and field athlete.

At that point I decided to try anything. So I basically followed the Specific Carbohydrate Diet but without dairy, as I know I am intolerant to dairy - probably casein, not lactose.

I did it for about a year, and eased off slightly at the end to stay as just grain free, dairy free and soya free. I then had a follow-up endoscopy and things had healed to almost normal (and boy, am I grateful, and hope it lasts).

So I really do think the SCD can help when nothing else is. Note too that I didn't take any probiotics, nor fermented foods, as I don't react well to either (although am starting to be able to tolerate them better now I think). I simply ate meat, fish, vegetables, fruit, nuts and seeds, although with no starchy veg at least for about 8 months. To help make it more bearable, as I am someone who needs carbs or feels terrible, I found the wonderful chestnut, as well as rutabaga and celeriac.

Feel free to email me if you wanted to ask anything about this. You will get there - it's just a case of trying so many different things I think. I also think this is not a diet to do forever as I think I am a tad salicylate intolerant now through sheer overdosing, but I think for a while it could serve a purpose.

Best wishes, Carolyn

Hi Carolyn,

There are many of us more recent forum members that would be grateful for you ideas and experience. Please, please stick with your forum watching for a while.

I seem to have a problem with sals (especially dried fruit, spices etc) and mushrooms which I have tried for months to keep in my diet without success :(

Can you stick around for a while and help us out?

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Hi there - yes of course. In my opinion this oh so unenviable journey is all about helping others if possible - I have been tremendously grateful for some of the incredible advice in the past from this board and also the UK forum (I am based in the UK). Indeed it was reading on this board about someone who had only started to heal on going entirely grain-free that made me look into the whole thing.

I'm sure that not everyone needs to be as severe, but I just took the attitude that going gluten and dairy free was clearly not working for me from my TTG and endoscopy results, so I had to try something else. What I'm not sure about to this day is whether the SCD worked for me because of the reasons they suggest - ie. reduction in bacterial overgrowth, or whether for celiacs it is simply because you cut out any possible risk of cross contamination through cutting out all the grains and processed foods. I do eat starchy vegetables now - ie yams, sweet potatoes, parsnips, rutabaga, celeriac, beetroot etc, and as far as I can tell I don't have a problem with them, I don't think.

I don't eat potatoes as they are one of the so-called "cross reactive" gluten foods. I have no idea if the science behind that is sound or not but have just taken the attitude for now that I'd rather err on the side of caution, so can easily live without potatoes and the various others on the list if it means I can be healthy going forwards.

Re salicylates and amines, I tend to try to follow some of the principles of the Failsafe diet, so stick to the safer fruit and veg on the list, along with meat, fish, nuts and seeds. Be careful about olive oil and coconut oil - which are of course supposed to be incredibly healthy, but they are both very high in salicylates. Oddly enough goose fat / duck fat may be better in moderation for those who are not so great with salicylates - or otherwise sunflower oil.

Something I read recently suggested that fish oil can help to reduce salicyalte sensitivity, but again I don't know if there is any evidence for this.

It is all DESPERATELY boring!!!!!! But I do feel better and may gradually start to try introducing different things, although the diet is now very "liveable" with.

Re how long it took to feel a difference, I would say a month from departing from traditional gluten free. At that point I was still eating starchy veg too though - had just gone grain free, so maybe that could be a first step to try, without going the whole hog of the SCD.

My email is carolynalmay@hotmail.com if I can be of any help to anyone. I would add that I absolutely don't profess to know what will work for different people, and can only tell you what I have found of course!

Best wishes to all,

Carolyn

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I had extensive damage when I was diagnosed. Basically, I had been pooping in my pants for 20 years. My mood swings were out of control and the depression kept me in bed for days at a time. The joint pain and fatigue were debilitating. I hadn't been able to work for years and I wasn't pulling my weight as a "housewife" either.

Now, I am working again and no damage is detectable.

I found that anything that has passed through someone else's hands is suspect. I am trying to grow everything myself, but I haven't gotten terribly far with that yet. Everything else I do careful elimination/challenge diets on. I especially avoid processed gluten free grain products. I definitely avoid things from shared facilities.

I also have problems with oats, but so far I haven't been able to identify any other allergens. I had problems with tomatoes from the store, but was able to grow my own and eat them fine. I e-mailed the tomato people and they were grown hydroponically with no coatings or anything else that should bother me, they said. I don't know what it could have been. That story has repeated itself many times.

I can only speculate on what might be causing the problems.

I have been gluten free for almost 5 years now.

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    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
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