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egs1707

Overwhelmed and unable to accept

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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 :unsure:

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???

Edited by egs1707
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You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse. 

Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 

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Hi egs1707,

Welcome to the forum! :)

Irene is right, you should not be gluten-free until all testing is completed.  The celiac disease tests are checking for immune system reactions and damage, and when you go gluten-free that starts to decline.  So the tests may not show the true immune reaction that is going on or the normal damage.  They may not show any damage in fact and you could get a false negative diagnosis.  You body starts healing and out the window go the test results.  Your doctor gets an "F" grade if they told you to go gluten-free now.

But you aren't alone in having a doctor who doesn't understand the celiac disease testing process.  Many of them are woefully ignorant of proper testing for celiac disease.  That why the current estimate is somewhere in the range of 85% of celiacs in the USA are undiagnosed.  It doesn't help when doctors screw up the testing themselves.  Or refuse to test people.  Which is also far too common.

I was vegetarian for 5 years.  I am not anymore and don't recommend it.  It is hard enough living gluten-free and finding safe food to eat and adequate nutrition for healing a damaged body.  I used to eat a lot of soy products when I Was vegetarian, but now soy makes me physically sick.  We can sometimes develop reactions to foods we eat a lot of while our guts are inflamed IMHO.  Soy is not a healthy food anyway from my reading.

I can't do dairy now but may people who start out lactose intolerant end up being able to eat dairy after they have recovered.

The best advice I can give is to avoid as much processed food as you can, and eat mostly whole foods you cook yourself at home.  When you do cook, cook big, and freeze the leftovers.  That way you can quickly take a small portion of food out of the freezer and reheat it.  Being celiac it is more important to learn how to cook.  Unless you are wealthy all those gluten-free processed foods add up quick.  Plus gluten-free processed foods often are lacking in fiber and vitamins.

You'll want to watch out for vitamin deficiencies also.  Since celiac disease damages the villi in the small intestine, the vitamins and minerals etc are not digested and absorbed well.  So celiacs can be low on vitamin D, calcium,  and one other one I forget.  Vitamin B-12 may be low also ( it is important for nerve health).  Then there are some vitamins that vegetarians tend to have problems getting enough of also to consider.

Adjusting to living with celiac disease means adjusting to a new diet and some lifestyle changes.  There's lots of us that make that change every year though, it's not impossible.  You will most likely end up eating better, more nutritious food than many of your peers.  And you will avoid a pletora of additional health concerns that can come along with untreated celiac disease.

Learning to cook can be an adventure and you may enjoy it once you start.  you may find your taste in foods changes once you have been gluten-free for a while too.

Recovery from celiac disease can take some months.  The immune system is very serious about protecting us and doesn't give up quickly.  Also it always remembers so it will react to even small amounts of gluten.  I live with gluten eaters at home and I do fine.  I just am careful about rinsing dishes off and so forth before using them.

There is a Newbie 101 thread at the top of the coping with forum subsection. 

It may provide some helpful info.

 

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Welcome to the board.

Celiac is not a death sentence by any means. I was undiagnosed from age 4 to age 46. Words can not describe the hell of the last 15 years before I was finally diagnosed. I am alive and healthier than I have ever been. There are others who also went years and are now doing well. There are some who had complications of cuorse but not everyone does. Thankfully it sounds like your doctors have found this relatively early. You should recover in time.

Do be sure to read that Newbie thread and if you can get the others you live with to read it also. You can live safely in a mixed house but you to have to take precautions to be safe.

As the others stated you do need to get back on gluten until all celiac related testing is done.  You don't have to eat a lot but if your going to get biopsies done you do have to have some daily.

Most of all try to relax. Having celiac does take some getting used to but you will be okay.

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Thanks for the replies so far everyone, much appreciated :)

Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in...

The doctors didn't diagnose this at all, Google did. If I trusted in the health professionals I'd be blaming the symptoms all on stress and having counselling for it whilst the fire raged on inside me due to a clinical condition they'd missed. Just glad one of doctors agreed to run the test on second time of asking to keep me quiet as much as anything.

Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems.

In the nicest possible way the vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html

The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now.

I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually.

With the biopsy and gluten from what I read the villi take a long time to heal up so they'd still see that. With the blood test result as definitive as it was surely the disease is pretty much confirmed? How can it heal enough for non eating gluten to throw a biopsy result yet on the flip side take over a year to heal (that sounds like the best case scenario time-wise from what I've read). Not suggesting anyone is wrong for one second but need to understand how that works with what's going on inside to make any sense of this situation.

Edited by egs1707

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I agree with all the advice you have been given.  It is excellent!  

I just want to add that things will get better.  There is a huge grieving process to go through.  Do not fight it.  You have a right to grieve as your health and lifestyle will change, but you will adapt!  Exercise gently until you feel a bit better.  There is plenty of time to exercise hard later.  Taken this advice from a gal who just rode 40 miles (no biggie you say) this morning  on her bike through the Santa Ana winds (better known as the Devil's winds!).  But I am three years into my recovery.  I took it easy the first six months because I was anemic.  I teach few exercise classes, bike, swim and run and I am in my 50's.  

The SCD website?  It can scare the (bleep) out of you.  There was one point that I took from the site and that was to stick to whole nourishing foods.  No rocket science -- just common sense.  

 

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I don't do grieving, bad enough for something that's been taken away in the past but to know my future is pretty much gone now just feels too much. The only time I've forgot about the unfolding nightmare was during my hour or so of sport so need to cling onto that at the moment or I fear going to a very dark place indeed.

Yup that SCD site is terrifying, still can't make up my mind if they're giving out useful information to genuinely help people or using scare tactics to sell their books etc. 

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24 minutes ago, egs1707 said:

I don't do grieving, bad enough for something that's been taken away in the past but to know my future is pretty much gone now just feels too much. The only time I've forgot about the unfolding nightmare was during my hour or so of sport so need to cling onto that at the moment or I fear going to a very dark place indeed.

Yup that SCD site is terrifying, still can't make up my mind if they're giving out useful information to genuinely help people or using scare tactics to sell their books etc. 

They are big on selling books -. They try to spam a lot forums and FB groups.

why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt.

at first,I thought life was over.  But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food.  I am here for the wine ( or the company :). ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.)

Edited by kareng

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You are sick.  Depression and anxiety are symtoms of celiac disease (and many other illnesses).  It is hard now to look forward and imagine a great life, but it is possible.  I think you are already in the thick of the grieving process right now.  Reaching out to this forum can be very healing emotional (it is not just all common sense advice about gluten-free food!).

 I did not say not to exercise, but to do it gently.  This is not the time to train for a marathon or triathlon!  

The SCD Lifestyle site....it is all about the money.  Seriously.  They are selling a book. 

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25 minutes ago, kareng said:

 

why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt.

 

In addition to cheese made with yogurt, hard cheeses like cheddar, romano, parmesaen etc are also going to be lactose free. Eggs are also a good source of protein if you eat them.

Do bear in mind that celiac can really mess with your head. It can cause depression and anxiety that can get worse for a short time when you first go gluten free. your life is not over by any means. The reason why you see more people on boards and in forums that are having problems is because most when they heal go on with their lives. We don't hear from them with the exception of a few that stick around to help people that are still struggling.

Hang in there it will get better.

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So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.

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Hey there! Welcome to the club you never wanted to be a part of. Boy, you are certainly throwing yourself one heck of a bang up pity party aren't you? PLEASE do not take that as a put down! I don't think there is a single solitary one of us who hasn't thrown ourselves at least 1 pity party. I know I've thrown at least 3. Oh, & crying meltdowns in the grocery store? Every one has been there, done that one too. It's all part of the process just like cyclinglady said. Ravenwoodglass is right on too about how it can mess with your head. Boy! Can it ever mess with your head!

You really have been given excellent info. by all who have answered. I want to touch on something that hasn't been addressed yet but you mentioned it and that is kissing. You might call me an old lady as I'm just shy of 60 but I'm also a child of the 60's so remember that when you read what I'm going to tell you. BTW, I'm married to the same person, my only marriage, for 43 years. Anyone who cuts & runs because they have to brush their teeth before kissing you is not worth 2 minutes of your time and you are well rid of them! Be thankful that you have this "screening tool" because it will save you a lot of wasted time. If they won't even give you a chance when they hear about the precautions you have to take then they aren't worth a damn! Imagine someone like that standing by your side when times get tough. You can't can you? That's because they won't and you want a true partner who will support you and hang in there through the challenges we face in life & believe me, you will both face many life challenges. 

Cooking.

You don't have to be a gourmet. Cook simple. You know how to boil & scramble & fry eggs right? Only takes a couple minutes. Veggies? Aw heck, nuke 'em OR throw them on a baking pan spritz them with olive oil & spices of your choice & stick them in the oven. Smoothies are easy. Fresh fruit is well, fresh fruit - easy - peel it & eat it or just pop it in your mouth. Sweet potatoes can be nuked too & are wonderful for you. Salads are easy. Nut butters are a great source of protein. Karen had some great examples in her post too. Her "attitude adjustment" tips are great as well.

 

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hey, i'm vegetarian and gluten free as well
have you tried making any recipes with cashew nuts like cashew cheese or pasta sauce? they're really good, easy to make and an excellent way to get more protein/iron
i can send you some of the easy recipes if you like :)

 

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17 hours ago, emma6 said:

hey, i'm vegetarian and gluten free as well
have you tried making any recipes with cashew nuts like cashew cheese or pasta sauce? they're really good, easy to make and an excellent way to get more protein/iron
i can send you some of the easy recipes if you like :)

Yes please, that'd be awesome :)

Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps.

Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure.

One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems?

Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed.

Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.

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Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until......

On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above.

Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 

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OK so been to the doctor, they've sped up my referral and I should get the appointment booking form in the post shortly. They've said stay off the gluten until I have a date for the appointment then in the weeks leading up to it go back on - thoughts?

Did my bit of sport last night which was a great relief to be free of any illness-related thoughts for an hour or two; didn't think I'd have the energy at the start but soon got going and was OK so that's a plus :)

I seem to be getting some strange symptoms at the moment that have only happened since trying to remove gluten, do these sound familiar to anyone?

  • dry forehead, just starting to go red \ itchy in places. Treating with E45-type cream
  • tender scalp and sides of head, almost like a pulling feeling and a bit sensitive to touch. Scared this one matches the symptoms of GCA, a particularly nasty autoimmune disease that can lead to blindness :o
    Edit: having said that just found this thread and funny enough did wash my hair this morning...
    http://www.celiac.com/gluten-free/topic/50920-sores-on-scalp/
  • one eye watering and associated fuzzy vision at times, trying to reassure myself it isn't blurred vision due to the point above
  • sometimes bit of a lump in throat sensation, seems to come and go

Been reading that some people can't handle rice - I was OK with it whilst eating gluten but have been having it for lunch each day and seem to get worse around 4-5pm so could that be a culprit?

How long after coming off gluten would I be able to say I'm at a baseline to know if feeling ill is down to "glutening" vs. blaming it on the body adjusting to the change in (lack of) gluten in food?

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I know what you're going through - it's that grieving process and it's tough.  I was diagnosed in 2013, and aside from an occasional pity party, I don't look back. I have my restaurants where I feel safe, I have the food I know I can eat, and I get on with my life.  I'm lucky that I live in a big city with lots of options, but you can make this work, and you will feel better and once you do, you'll stop grieving.  The people on this site helped enormously.

It is tough in the beginning to know if you've been 'glutened' vs. just going through withdrawal.  For that reason alone, it's best to avoid restaurants for a little while and be careful at home - just to be sure what's happening.  Eventually you'll be able to get back to your version of 'normal'.  Oh, I also have hypothyroid/hashimoto's.  No big deal, I take synthroid.

Quinoa, eggs, nuts and beans for protein.  You don't have to go crazy on the cooking.  Just eat a lot of whole foods.  There are a lot of complicated recipes out there, but now may not be the time.  Rice noodles in veggie bouillon - easy and cheap.  gluten-free pasta with olive oil, parmesan and garlic - easy.  I eat a lot of rice and have never had a problem - you're not getting it out of one of those bulk bins, are you?  That could be contaminated.  Go with packaged.  Do you have access to the Macro Vegetarian brand of prepared rice dishes (in the refrigerated section).  They have several that are gluten free, they're delicious heated and with a little gluten-free soy sauce.  They're my go to on days I don't want to cook.

Good luck!

 

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At the moment it's microwave rice packets as it needs to be something easy for lunch at work. What do you choose for breakfast? At the moment I have gluten-free porridge oats with fruits but also seeing oats are a bit of a gamble in the early days.

Trying to figure out how long a reaction takes to show up i.e. if I feel ropey later in the day is it really lunch as I'm blaming at present or actually is it something from the morning or even night before?

The food is the toughest bit for me right now; wasn't that great with it before so will need plenty ideas from you good people... seems I'm in the right place though :D

 

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You mentioned the tight head. Yes, both my celiac sibling and I had head pressure. Mine was horrible last glutening with eye pain as well. Like someone put a vice around my temples. I swore it felt like a parasite infected my gut, thyroid and brain. It is going away mostly, still have it on and off a bit. 

My brother said his naturopath informed him some celiacs get a bit of inflammation in the brain. 

 

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egs1707.

Are you in Canada? 

It's NOT a good idea to go gluten free between now & the GI appt. and here's why....

MOST of us have MUCH stronger reactions to gluten when we go back on it for the endoscopy. A lot of people have had such strong reactions that they have been entirely unable to complete the challenge and have to call it quits. This means they never get an official dx.

It's your call, you make the choice. However, I will say that you don't have to eat a lot of gluten, a couple saltines or a slice of bread per day. 

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No I'm in the UK, from what I've been told that's a good thing for gluten labeling and standards compliance.

What you and everyone else on here says makes more sense than what the doctors are saying (a confused message at best is what they're giving me, each one with a slightly different version of it).

My referral letter is in the post so on theory appointment may not be that far away. I have a load of my favourite Quorn stuff (non-gluten-free version) in the freezer so perhaps using that up may be a good way to proceed for now.

I'm out at the moment and torn whether to try chips from a café, in the strict gluten-free future would probably be a no-no but in current situation probably not so bad...

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16 hours ago, egs1707 said:

.What do you choose for breakfast? At the moment I have gluten-free porridge oats with fruits but also seeing oats are a bit of a gamble in the early days.

 

Breakfast on the go is always trickiest for me - I go with a whole fruit - banana, apple - or a yogurt, or a small bag of nuts.  Occasionally, I have a couple of hardboiled eggs at my local pret a manger.  Much prefer breakfast at home, where I can make myself an egg and cheese sandwich with avocado on gluten free toast.  Or cereal ;-)

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If I do have to go back on gluten for a bit it'll at least be a temporary relief from the withdrawal symptoms (or at least what I hope are just withdrawal symptoms). Today's returning malady is acid reflux, something I'd thought I'd seen the back of recently. Really need that to calm down as PPIs the doctor gave before were evil medication and caused 10x more problems, possibly the worst I've ever felt whilst on those so won't be going back there!

Although the scales seem to have stabilised in terms of weight loss in myself I feel like I'm wasting away at present, what with the random pulling sensations in muscles and tender head area I'm just scared for what other illnesses may be laying in wait related to the celiac genes :unsure:

Think I'll head back for the ESR and CRP blood tests next week as the shoulder and temple pains are really worrying me right now, could just be the gluten intolerance but the other options are terrifying if not caught early. So much uncertainty, apart from the fact that none of this ever gets fully better (if at all)...

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Hi Egs1707,

You are probably already aware of nutrient deficiencies that vegetarians need to watch out for.  Here is an article that might help anyway.  I don't agree with all of it especially the idea that eggs and dairy can provide 't all the vitamin D we need.  Many people in the USA are vitamin D deficient already, even people who don't eat vegetarian diets.  So obviously milk and eggs don't do the trick for most people.  Getting out in the sun can help but only at the right time of day and for enough time to get some vitamin D made in your skin.

http://www.shape.com/healthy-eating/diet-tips/ask-diet-doctor-vegetarian-diet-deficiencies

Livestrong says most Americans are low on Vitamin D.

http://www.livestrong.com/article/284285-symptoms-of-a-vitamin-d-deficiency-in-adults/

Some of the best food sources of vitamin D are mackeral, sardines, salmon and tuna.  I realize those may be off the menu for you so supplements are important to take.  Vitamin D is a fat-soluble vitamin which is bad for a celiac because we can have problems absorbing fats.  Vitamin D deficiency is associated with depression and bone pain, and muscle weakness

Vitamin B-12 is only found in meats so you do have to take supplements to get enough  of it.

The problem is celiacs can have gut damage that can make it hard to absorb vitamins.  So you have an increased chance of vitamin deficiency to begin with.  Add in a vegetarian diet that is automatically lacking in some vitamins and you have a real potential problem.  Right when you go gluten-free and your body is trying to heal it has a hard time making new tissues because the vitamins needed are not there.  You can't expect to heal and recover quickly if your diet doesn't have the needed vitamins and you can't absorb them well  anyway.

Some people get vitamin shots at first to help overcome the vitamin issues they have.  Those might help you.

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Thanks for the info, yup always been surprised my B12 levels have been OK when I've had blood tests - the supplements I take for it must be doing the trick. Vitamin D is more interesting, not sure if that was on the tests will need to check that.

The acid is driving me nuts at the moment, seemed to have been triggered by an Amy's Kitchen lentil soup (gluten free) so guess that won't be on the menu again. Only hope it's something in the processing as opposed to lentils themselves as I need that protein source badly.

Shoulder and arm weakness / pain seems to be another new problem that's popped up since starting the gluten-free change. If anything I'm getting worse from it, doesn't bode well...

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    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
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    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
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    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
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    Jefferson Adams
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    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
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    Read more at: Sciencedaily.com

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    • OK good to know. Thanks for the tip
    • This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case. My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker.  She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis.   I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.
    • Has your Dr mention Microscopic Colitis at all.  You mentioned taking PPI's.  I took them for over a year - 2 morning and 2 night.  I think that's how I ended up with Microscopic Colitis.  I don't think I have Celiac disease but do think I am very sensitive to gluten.  My GI dr. told me to eat whatever I want , but have learned from research, partly from microscopiccolitis.org that almost everyone with MC is sensitive to gluten and most to dairy and some to soy.  I know some on this site don't agree with some of what is said on that site, but they are really good people who want to help.  Just said all that to say, maybe you should ask your GI if you could have MC.  Hope you get it all figured out.  I know the frustration.  It can take over your life.
    • Yeah their shreds raw are nasty but melted in recipes they are decent, they make 2 different shreds a cutting board super stretchy version and a plain, they also sell that mac and cheese sauce by itself for use in other recipes. https://store.veganessentials.com/daiya-deluxe-cheeze-sauces-p5079.aspx The company makes a decent cream cheese and cheese cake also if you can stomach the xantham gum.

      I am going to copy and paste something from another thread thread and link you a list of alternatives. " Violife...makes vegan Feta...I have been dying to try their cheeses and hear good reviews. They also make other cheeses.
      https://store.veganessentials.com/just-like-feta-by-violife-p5342.aspx
      Kite Hill makes great Ricotta, the truffle cheese from them....yeah you will eat the whole thing in one sitting stuff is addictive,  decent cream cheese if you can stomach xantham gum (only one they have that has it).
      
      Miyoko Creamery makes great mozzarella and even a smoked version I hear they make great cream cheese and wheels also but I have not gotten any. Leaf Cuisines makes the best smoked gouda, and a strong garlic and herb cheese

      Tree line Scallion is glorious, and their garlic and herb is milder then Leaf cuisines but decent flavor...the peppered is meh.

      Daiya Blocks flavor wise are better then the shreds, the jalapeno Havarti is one my my dads favorites and he loves their cheddar...again xantham gum so not for me. Their cream cheese is decent but noticeable artificial. Their shreds come in 2 formulations a high melt version (cutting block) and standard I they taste better cooked into recieps over raw.
      Daiya recently started offering cheese sauces...like the stuff they used to sell with their mac&cheese but just the sauce.

      Lissanatti makes the best "raw" shreds for cheddar and mozz.

      Parma makes great Parmesan sub...the better then bacon one is SUPER addicting.

      I heard good reviews on so delicious cheese....but corn makes makes me not even able to do a chew and spit taste without an allergic reaction.

      I recently found a creamery you can contact about getting cheeses...I found their sauce on a site and got it.....great Alfredo sauce.
      http://www.parmelacreamery.com/
      https://www.luckyvitamin.com/m-28232-parmela-creamery
        Dairy Free cheese products  NOTE CHECK FOR GLUTEN FREE ON THEM
      https://store.veganessentials.com/cheese-alternatives-c6.aspx

      Other gluten free options for everything else  
    • Dairy is dairy on a elimination diet, your trying to void all the proteins, lactose, whey, casein, and the enzymes, hormones, pus, etc that could be setting off issues. I would even say wait at first on the dairy free alts. IF anything go with the fewest ingredients ones without starches or gums like the plain kite hills, tree line, leaf cuisines and miyoko. And completely sideline the crazy ones like daiya, or the blends of more then 2-4 ingredients.
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