Overwhelmed and unable to accept

[Peaceflower]

1 hour ago, egs1707 said:

No meat, no fish at all.

Read somewhere lentils and beans can end up with the same effects, if so then what?

I need to be around 12-13st but if I don't find a protein shake replacement to top up between meals I'll be down to 10st in a month's time given the speed I was losing weight on gluten-free last time. Managed to get some back on with the shakes while waiting for the endoscopy which gives me a bit of leeway but not much.

Lentils and Beans don't contain gluten.  Some people are sensitive to grains and need to avoid rice and corn, but that's nothing to do with this and I wouldn't give yourself more to worry about unnecessarily.

 

[kareng]

3 minutes ago, Peaceflower said:

Vegetarian

 

I am confused.....  I was asking the op why they are a vegetarian.  If it's not a religious reason, He or she might need to make a different choice if they need to get enough nutrition.  

 

[Peaceflower]

16 minutes ago, kareng said:

I am confused.....  I was asking the op why they are a vegetarian.  If it's not a religious reason, He or she might need to make a different choice if they need to get enough nutrition.  

 

I'm assuming they see a dietician, you'd hope!

[egs1707]

It's an ethical choice and one I won't change whatever the knock on effects. The thought of killing and eating another living creature is something I just couldn't be doing with.

Been referred to the dietician who's meant to be a specialist in this field but not heard anything from them yet.

I'm guessing there isn't but is there any test to show up if someone has the celiac reaction to oats (avenin?) as opposed to gluten (gliadin?)

[zenjess1980]

On ‎9‎/‎25‎/‎2016 at 8:30 AM, egs1707 said:

I really do hear you, and I relate quite a bit, actually.  Just my two cents  

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.

I hear you. I really do. Just my two cents though  

 

With my own diagnosis, I had years of various symptoms. Nobody ever mentioned Celiac.  Finally, I stumbled upon information on Celiac Disease and asked for the blood work. Voila. It was positive.  When I went in for a biopsy, I was told that there wasn't damage to my Villi (yet), but that I had Cancer (Non-Hodgkin Lymphoma of the Duodenum. Apparently a very common Cancer to get with untreated Celiac Disease.) I continued to eat gluten, though. I felt as though I had bigger fish to fry with having Cancer. Not realizing, or understanding, that the two were most likely 100% related. My GI doctor said since there wasn't any damage to my villi, that going gluten free wasn't necessary (yes, despite having Cancer, despite the positive bloodwork.) Later, I learned through a functional medicine doctor that I had "latent celiac disease."

 

 

Quote

 

 

Quote

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.

I too was a Vegetarian for several years. I'm also diabetic. To be honest, it took a lot of finagling. It was not easy.  And for me, I eventually went back to eating some meat (not a lot though, because of various issues I have with it.) Luckily, I have not wound up with dairy issues, and a lot of my diet comes from dairy products. I do not cook everything from scratch, and often eat on the go, not much preparation. May not be the healthiest, BUT it works. At least for now.  One the days we do eat cooked from scratch meals, I'm lucky my wife is the chef LOL!

 

Quote

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

Unfortunately, this is true. I too have Hashimoto's Thyroiditis, and several others.  They seem all linked together, and it's maddening that the medical community is lax and seemingly not knowledgeable on how pervasive Celiac is and the illnesses that can stem from it. On a positive note, for me, I have noticed that my symptoms of the other diagnoses have greatly diminished since going gluten free. It took a bit, but it did happen.  

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. 

I'm glad you are noticing some improvements thus far.  I hope the improvements continue, I'm sure they will.

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...

Having a biopsy is a personal choice, and comes with pros and cons. Best of luck with your decision in what's right for *you*

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

Again, this can be quite true. My social life is affected by my Celiac, no doubt about it.  Sometimes I feel left out, OK a lot of time I feel left out. My family doesn't get it, and doesn't much try to accommodate, and honestly sometimes I cave and eat gluten. CRAZY I know. Especially having had Cancer DIRECTLY related to eating gluten/undiagnosed Celiac. I really do the best I can, and I hope for me I can really get down to the root of why I allow myself to give in.  Does it get better? I wish I had an answer to this question for you. I simply do not know, and I'm not there yet if it does.  What I do know is this...  I feel better NOT eating gluten. I pay for it when I DO eat gluten.  Seems as though it would be a simple fix. But it's so much more for me, personally.  So much more tied to it, that I do not see others struggle with as much as me sometimes.  Could be my past history with an eating disorder. I really do not know. But this definitely calls for some soul searching on my part, because eating gluten for me has already come with grave consequences.

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.

In my home we have a shared kitchen, but make sure to wash our stuff.  My wife is not gluten free and I am.  So far I've been ok. Now, extended family (especially around the holidays) really has been kind of a mess.  One side of the family just doesn't much care or respect what I need to do for my health.  They don't care to understand, or even remember WHAT the problem is.  The other side just doesn't talk about anything, which leaves me often left out, with few options.  Hence, THIS is when I cave.  Again, not a good thing. I know this.  I am trying to learn to adapt and put my health as a priority, even if those around me don't see it that way. Maybe it's easier for them that way? Who knows.

 

Quote

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.

Well, I'm not dating but I am married to an gluten eating person. I've never had a problem on this front.  With that said, some people are more sensitive than others.

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???

I don't know how Celiac comes about.  But, in hindsight, I've had GI issues my entire life.  As I got older, the issues I had branched out from GI issues to other unrelated issues (thyroid, skin problems, exhaustion, fibromyalgia, etc. etc. etc.) It use to be really important for me to know.  Now, not so much.  It is what it is, and there's nothing I can do to change it, other than to be proactive with my health.  Now, does that mean that some days don't still seem bleak? Absolutely not.  Some days DO seem bleak. Especially around the holidays.  It's easier for me to be gluten free in my own little bubble. BUT that's also not the way I *want* to go about living and thriving as a Celiac.  So I guess what I'm saying is, it takes time. It takes time to adjust, and figuring it all out isn't what it's about.  I use to think if I could figure everything out, somehow I'd be more in control. If that makes any sense? For now, I'm taking it one day at a time.  Some days are better than others.  I reach out to my supports, try to not dwell on those who aren' supportive. That's all, at this point, I can ask for.  And, for now, I'm ok with that. 

 

Best wishes!!!

 

[cyclinglady]

On October 8, 2016 at 2:37 PM, egs1707 said:

2 hours ago, Peaceflower said:

Lentils and Beans don't contain gluten.  Some people are sensitive to grains and need to avoid rice and corn, but that's nothing to do with this and I wouldn't give yourself more to worry about unnecessarily.

 

Lentils and beans  are naturally gluten free, but cross contamination can occur as they can be grown in fields that wheat has been in.  This is easily remedied by sorting them and then washing them prior cooking them.  

What i do not get is that if you have been a Vegetarian or even Vegan, you should have been eating nutrtionally dense foods (e.g. Protein) all along.  Eliminating gluten should not impact your diet unless you ate a lot of processed foods or dined mostly at restaurants.  If that is the case, start watching the Food Network channel and learn to cook. Life is hard and you can not have it all. 

There is no test for oats and how they may impact a celiac.  That is why experts recommend eliminating them for the first six month and then re-introducing them. 

[Gemini]

8 hours ago, Peaceflower said:

Cross-reactivity is not a myth.  My daughter carried on being sick until we also stopped giving her oats.  The reaction may not be as severe, but we can't touch any gluten free wheat or oats, because they can label things gluten free that are up to 20 parts per million gluten containing.  That's not gluten free.  Despite what people may experience, we all have a different tolerance level and only you will be able to work out what yours is.  Just cut out anything with wheat, oats, barley, rye, even if labelled gluten free, then see how you are and try these things one at a time once you have recovered again.  It may take a fortnight before you begin to feel better, but you could notice a change before that once you've cut out oats.  Not ever Coeliac can tolerate gluten free oats.  Your reactions may become less after a while, but it takes months at first before you heal enough for a little not to cause a ripple effect.

 

Sorry, Peaceflower, but cross reactivity is a HUGE myth.  You are confusing a reaction to oats with contaminated oats. Your daughter may be one of a very small percentage of Celiac's who react to oats and it has nothing to do with gluten contamination.  Not to mention that certified gluten-free oats are completely safe for those who can tolerate oats. But no one who is symptomatic or newly diagnosed should be consuming oats of any kind.  Let's not make things worse here.......the OP is having a difficult enough time as it is.

[egs1707]

3 hours ago, cyclinglady said:

 

Not sure if the quote has worked correctly there but anyways... being in an active lifestyle, lots of sport etc. takes a lot of protein to maintain (or gain) weight and needed top-ups with shakes, bars, meals involving the Quorn products etc. Basically need every source of non-meat protein I can get but now those are shrinking by the day and not even got to dairy and soy yet. The only other protein powders I know of that don't contain oats and pea and hemp protein, all hopes pinned on those now it seems.

And yup I did rely a lot on restaurants and cafes, having meals out was something I enjoyed plus the social side of just dropping into somewhere and grabbing some nice hot food for lunch. All gone now, replaced with reheated plastic containers on my own while people make sarcastic comments from afar (again speaking from direct experience).  Sorry I just can't see any joy in such a lifestyle, especially the lonely aspect of being the social outcast due to the food.

Quote

There are solutions.  Get some doves farm flour and make banana loaves, bread, eat eggs, fish (do you eat fish?), lentils (speckled ones boiled with brown rice are delicious with fried onion on top and greens on the side), eat pumpkin or squash, chips with beans and cheese, baked potatoes with something and plenty of broccoli or spinach.  I dropped to below 6 & a half stone and am over 9 now and I don't have a crumb of anything labelled gluten free ever...

Eggs, chips and beans was my go-to lunch meal but only able to have it at home now due to this cross contamination craziness. Baked potatoes again another veggie favourite so let's hope I don't get the nightshade issues others have had.

Had to try and explain the whole gluten thing to someone else recently, they heard a few words and went "oh you're not a celiac are you" like it's leprosy or something, that's the social stigma I'm talking about right there...

Quote

Life is hard and you can not have it all. 

Never mind can't have it all, this illness seems determined to take away anything good in life and it's doing a damn fine job of it. Just one kick in the teeth after another at the moment 

[Pegleg84]

I wouldn't worry about other intolerances at this point. Right now your gut is saying "WHAT THE FUG IS GOING ON?!" and is going to be extra fussy for a while until it starts healing up. If in a year you feel mostly better but not quite, that's when it's time to look for other issues. That said, oat protein (powder) might be ok, but whole oats might not because they are hard to digest. Eat what you can, but fried food and over-processed stuff will not be helpful right now.

Also, not sure if anyone mentioned digestive enzymes and probiotics, which can help make up for the damage in your gut. It can take a couple weeks to start noticing a difference, but taken daily with meals it can make a difference.

My partner is a strict vegetarian. He eats dairy but not eggs, and is just as careful about meat as I am about gluten. It's nigh impossible for us both to find a place we can eat out at happily. Of course, he hates to cook and eats a lot of frozen processed crap and I worry about him in that respect, but there is NO WAY I would ever suggest he start eating meat again, just as I would never want anyone to suggest I start eating gluten again. Of course, for him it's a moral choice not a necessity, but after 20 years, his body probably can't process meat anymore anyway. Stick to your convictions. It's going to be harder, and you'll have to expand your protein sources a bit (beans, legumes, lots of greens, nuts and more nuts, etc). Hopefully the dietician can help with that.
 

If you have a favourite place you used to eat, talk to the chef/management, and see if there's anything they can do for you. Unless it's a dedicated gluten-free kitchen, there's always a risk, but good communication can help. If you don't want to make a scene at the restaurant, go in when it's quiet or call ahead and ask all the questions. I find this saves a lot of hassle. It is possible to eat out safely, but it might become a once a month thing instead of an everyday thing.

[Peaceflower]

1 hour ago, Gemini said:

Sorry, Peaceflower, but cross reactivity is a HUGE myth.  You are confusing a reaction to oats with contaminated oats. Your daughter may be one of a very small percentage of Celiac's who react to oats and it has nothing to do with gluten contamination.  Not to mention that certified gluten-free oats are completely safe for those who can tolerate oats. But no one who is symptomatic or newly diagnosed should be consuming oats of any kind.  Let's not make things worse here.......the OP is having a difficult enough time as it is.

Hi Gemini, Cross-reactivity is not relevant in the context of oats, but it certainly isn't a myth.  If OP is suffering after eating oats, perhaps they are one of the few who DO react to oats.  Let's not fall out here or have side-discussions.  I care a great deal about helping people who are suffering, especially psychologically when affected.  Making things worse would be to say something unhelpful.

[Gemini]

20 hours ago, Peaceflower said:

Hi Gemini, Cross-reactivity is not relevant in the context of oats, but it certainly isn't a myth.  If OP is suffering after eating oats, perhaps they are one of the few who DO react to oats.  Let's not fall out here or have side-discussions.  I care a great deal about helping people who are suffering, especially psychologically when affected.  Making things worse would be to say something unhelpful.

I have not made anything worse.  I spoke the truth.  That is the most important information to give anyone new to Celiac.  The only medical issue where cross reactivity happens is allergy. Celiac is an intolerance and there is no validity to cross reactivity with Celiac.  In other words, coffee or anything else on the internet list will not be mistaken for gluten. 

If someone is reacting to certified gluten free oats, it is either because they are reacting to the protein in oats (which is a well known occurrence) or they aren't eating certified oats.  Or they are having a problem with the amount of fiber in them.  This is not a side discussion. It is very important for people to understand that cross reactivity in regards to intolerances has no medical validity. They should not be cutting out foods from their diet they do not have to.

[Gemini]

On 12/3/2016 at 1:33 PM, egs1707 said:

 

Can go out and eat at the non-gluten-free friendly restaurant... no I can't, that's the reality. Sure I can go and sit there and watch other people have their food, whilst being the butt of jokes for 2 hours but that doesn't appeal somehow. Can I make people more understanding and willing to help accommodate the gluten-free rather than laughing at it, nope can't change that either apart from cutting them loose completely. 

I never eat anywhere that is "non-gluten-free friendly" and I doubt anyone on here does that.  I am talking about gluten-free friendly restaurants or the rare "totally gluten-free restaurant".  You are from Great Britain?  I have been there many times and eat out more successfully there than I do at home. The places I go to when on vacation are all gluten-free friendly and have trained their staff well on cross contamination.  I am very sensitive to small amounts of gluten so if they did not do their job well, I would be deathly sick. It doesn't happen.

It sounds like you need new friends. No one has ever done that to me and I would personally not allow that type of behavior.  If people are mocking you and being horrible all because you need to eat gluten-free, why would you have them as friends?  I know when a person is feeling lousy it is hard to confront people about their idiotic behavior but you need to take control of the situation and let them know that behavior is unacceptable.  Or just dump them from your life.  There are plenty of people out there who make great friends, who will never belittle you and will be supportive.

In which case you're very lucky and be thankful for that. I was made to feel isolated and belittled in front of others at least 4 times in the first week after the diagnosis. If people in the real world (away from these forums and suchlike) had been kind and understanding maybe I'd feel a bit better about it. Sadly my experience so far has been that people either treat it as a joke, a weakness to exploit for their own gains or make sarcastic comments about overreacting, can you blame me for how that makes me feel?

I am not lucky with regards to how I approach life as a Celiac. This is something anyone can achieve and do. I think you are stuck in a rut and are not getting proper nutrition and support so it is affecting you terribly.  It is not easy in the beginning because you have to learn the diet correctly while feeling sick and tired.  Could you possibly find a Celiac support group in your area?  A councilor was another great idea but you don't seem to be ready for that yet.  All I know is that you sound miserable and lost and you need to reach out to others for help, on top of the help you receive here. 

Maybe it's a generational thing as the only people who have been a bit more understanding in the world world over the past few weeks have been a bit older. Unfortunately though the same doesn't apply with those I need to socialise with where thanks to dating apps, proliferation of social media people (and relationships to some extent too) are seen as disposable. I've seen that happen right in front of my eyes the past few weeks

I completely hear you on this one. I am one of the older folks and when I see the behavior of those on social media, many of them younger, I am appalled.  In my day as a young person, no one would talk to someone like that in person. I think the anonymity of social media creates really bad behavior with no consequences. I am glad I am the age I am because I do not use social media much at all and have no need for it. Friendships made in person and cultivated over time are the best way to go as you easily see, over time, what a person is really like. 

Even saying the name of the illness is enough to send people running, I mean come on "celiac disease" even sounds like something you can catch, horrible turn of phrase for a horrible condition imo. Using "gluten intolerant" sounds a bit less threatening and slightly more socially acceptable. Only problem is that's verging into fad diet territory that again is right up there in the joke book to the point I'm seeing gluten-related comedy routines popping up in on my FB news feed.

Time to unplug social media and make real friends.  I think it is called cyber-bullying and that is easy to stop....just walk away from it and realize there are many crazy people out there who thrive on harassing others. 

The gluten-free diet in itself is manageable I get that, however the whole cross-contamination situation really does come across as quite neurotic to people living a normal life. As a test replace the word "gluten" for "dust" in terms of how you'd describe the conditions required in a kitchen and see how it sounds if someone was describing their cleaning routine...

Cross contamination may sound daunting to begin with but it is something that will become second nature, over time.  I don't give a crap if people think I am neurotic, either.  I am not....I just follow what I learned from medical professionals.  It is no different than having surgery.  There is a protocol that is followed to prevent infection just like there is protocol that is followed to ensure a safe meal, free of CC.  Restaurants  have made great strides in providing safe meals because it's really good for business.  Finding good places you can trust takes time but it absolutely can be done!

 

 

[Peaceflower]

1 hour ago, Gemini said:

I have not made anything worse.  I spoke the truth.  That is the most important information to give anyone new to Celiac.  The only medical issue where cross reactivity happens is allergy. Celiac is an intolerance and there is no validity to cross reactivity with Celiac.  In other words, coffee or anything else on the internet list will not be mistaken for gluten. 

If someone is reacting to certified gluten free oats, it is either because they are reacting to the protein in oats (which is a well known occurrence) or they aren't eating certified oats.  Or they are having a problem with the amount of fiber in them.  This is not a side discussion. It is very important for people to understand that cross reactivity in regards to intolerances has no medical validity. They should not be cutting out foods from their diet they do not have to.

Gemini, you misunderstand me in your defence.  I said, making things worse is to say something unhelpful.  I wasn't referring to you, only that I was offering support.  Newly diagnosed people need support.

[egs1707]

@Gemini so much of that longer post above resonates, thanks for taking the time to post it.

Send restaurants have an accreditation from Celiac UK in terms of their preparation standards which is good. Others are more understanding of it now and say they'll prepare food in a clean area, separate utensils and so on but with the caveat they can't 100% guarantee things.

In a way that's no different to a split household I guess so it's a calculated gamble I guess. The specialist I saw seemed to err towards giving things a shot rather than becoming isolated through gluten paranoia, others would probably disagree but to that I guess what fun is a life lived in a pristine gluten-free environment but being completely alone as a result?

Yeah you definitely find out people's true colours when at your lowest point. It's made a difficult time even harder with the way some of the people in question have behaved, really winds me up the more I think about it tbh.

Hit a new low tonight; all through this process (even during the gluten challenge when in theory I should've been at my worst health wise) I've been able to carry on with my sport and feel OK for the hour or two. Not tonight, body completely shut down on me to a point it was getting quite scary for a few minutes literally dragging myself around in a daze.

If this is the new normal, rather than the bit of promise shown last week then I'm really at a loss to see any kind of future as sport is my only release from this hell and something that gives a bit of enjoyment and feel-good factor. Without that... well I can barely even contemplate...

Thinking back I also don't get the oats thing as I was having oat-containing protein bars during both the first gluten-free period and the first two weeks this time round with no ill effects. The problems this week do all seem to have stemmed from the new (gluten-free) protein shake I bought but so hard to tell for sure. Is the theory that the reaction is the same as gluten i.e. one crumb of oat is the same level of bad as it would be wheat? If so it doesn't seem to make sense.

[Gemini]

http://www.justglutenfree.co.ukI am not sure if the reaction to oats works on the same principal as that towards wheat gluten.  I do know that some Celiacs react to the protein in oats the same as they do to wheat but at what levels I am not sure.  It may be the same small amounts, though.  Are you sure that the oats used in the shakes were certified gluten-free oats?  You have to remember that you are new to gluten free so need healing time.  What may not bother you on some days may bother you on another. 

The exercise problem is not permanent.  I exercise twice a week in the gym and there are some days when I may be tired and I do not do as good of a work-out as on others. Sometimes they ramp up the work-out and they are hard.  I may not do as well sometimes with that.  Everyone has good work-out days and bad. That is completely normal.  People without Celiac have that experience.  I did not start working out until I was gluten-free for 5 years. It took me that long to get healthy enough to begin a program. Do not work-out on days when you are tired or not feeling your best.  Just go for a walk. Do not feel guilty about it. Make sure you have had enough to eat before the work-out or you will run out of energy and crash.

The gluten-free bread in England is good.....very good.  You need to eat carbs to work out also.  The "Just" brand of gluten-free bread from Scotland is excellent.  Check it out!  

http://www.justglutenfree.co.uk  

I should add that it is suitable for vegetarians!

 

[egs1707]

On 07/12/2016 at 3:11 AM, Gemini said:

http://www.justglutenfree.co.ukI am not sure if the reaction to oats works on the same principal as that towards wheat gluten.  I do know that some Celiacs react to the protein in oats the same as they do to wheat but at what levels I am not sure.  It may be the same small amounts, though.  Are you sure that the oats used in the shakes were certified gluten-free oats?  You have to remember that you are new to gluten free so need healing time.  What may not bother you on some days may bother you on another. 

They're certainly meant to be, maybe it's the concentration of it that was just a bit too much perhaps.

Went to see a dietitian today, they seemed to think I'm on the right track and as per many of the replies on here it's a time thing before seeing any real benefits. Found a few websites that can supply homecooked gluten-free meals in frozen form to help bridge the gap while I'm figuring this all out which is handy.

The reaction from the other day is calming down now so hope for an improvement next week, fingers crossed...

[egs1707]

Bit of an update...

Had a good spell the other week where energy levels shot up and felt really sharp mentally too, was beginning to think I might have some hope there and made the most of it in sports, going out etc but... (and it seems with this condition there's always a but...)

Now I feel terrible  Over the last week or so I've developed a new weird issue with my shoulders feeling weak and sore. Lifting arms brings a tightness that goes into my head and neck. Not sure if it's a deficiency, stress or glutening but it's horrible I know that much. Really hit me last night , woke up at 3am with pains in the shoulder blades and on my right hand side abdominal area. 

Started hitting Google for shoulder blade pains http://www.ehealthstar.com/shoulder-blade-pain.php and the results scare me, especially as I live in fear of the celiac \ cancer link. It's like every time I feel caught out I'm a bit closer to the worst happening. What a curse this condition is, keep asking what I've done so wrong in life to deserve this 

Losing weight again too after it staying stable recently. Can only hope it starts going back on once I get back into routine again. Have also added a 3000IU Vitamin D supplement as that seems to be a common issue.

Having to fight with doctors to get any form of further diagnostic blood tests done as they've come out and said no further checks are necessary (bearing in mind these are the same doctors who failed miserably with the diagnosis). So has to go down formal complaints route and another battle, just what you need when in a bad place health wise.

[Huntress]

I would suggest looking into a high quality whey isolate protein powder instead of the pea protein, which tastes absolutely horrid. Most quality whey isolates have zero lactose and are gluten-free.

[egs1707]

On 03/01/2017 at 0:20 AM, Huntress said:

I would suggest looking into a high quality whey isolate protein powder instead of the pea protein, which tastes absolutely horrid. Most quality whey isolates have zero lactose and are gluten-free.

Hemp was the other one I've been recommended to, now in theory lactose free sounds good but...

...noticed the other day when I loaded up on dairy (protein drink, milk chocolate etc) I felt a bit more queasy and slight headache so thought I'd try swapping dairy for some alternatives to see if it helped...

...big mistake it seems. Had lactose-free milk and almond milk and since I've started burning up inside. My thumb joint, shoulder area and a few other parts are really sore and generally feel bad.

The more I read this forum the more scared and down I get. Now reading about intolerance to just about everything I'd eat as a vegetarian (dairy, potato, tomato, fruit, eggs, soy, beans, grains) and also that the pains can be arthritis...

...arthritis, at 30?! the bad news gets worse  The fact that also comes bundled with heart disease risk, to go along with my existing celiac cancer worries mean I'm burning up with worry as much as I am physically right now.

Just before Xmas I was flying, had so much energy yet now I feel worse on this diet than I ever did whilst on gluten.

Still having to fight the doctors to get any blood tests done so no idea how the vitamin levels are looking right now.

Arms still feel weak and have the sensation like the muscles are wasting away. That said I still managed my sports the other night to my usual level so they can still perform when required. It's just this feeling of malaise and inflammation that scares me. 

B12 problems perhaps?

[Jmg]

 

Egs I think you should reconsider your attitude to seeing a counsellor.  If for no other reason than that you're currently in the early stages of the grief process, although you may not see it as such. Just from reading your posts I can recognise a lot of the thought processes and attitudes I went through on discovering gluten was a problem and although it took me a long time, I finally saw a counsellor and have found it very useful in coming to terms with a new reality. Like you I had bad experiences with doctors and was exhausted from fighting for their assistance. Counselling isn't about changing how others see you, it's about changing your own mindset. 

This also struck a chord:

On 1/5/2017 at 2:32 PM, egs1707 said:

The more I read this forum the more scared and down I get.

I left the forum for quite awhile after initially visiting every day and reading everything I could. After some time I realised it wasn't helping me any more, just feeding my anxiety and sense of gloom. You don't need to know everything about this straight away, you have plenty of time. You know enough now to get on and heal.

Speaking of which, the healing process wasn't a steady rising incline for me, it had ups and downs. I think our bodies have been so stressed for so long, there's a period of readjustment once you take the gluten away. As for people that run a mile when they find out, they're doing you a favour. Better you learn their attitude now than waste years finding out. You find out over the years which are the real friends.

I wish you all the best. Although you may not feel like it now, I so much wish I'd found out when I was your age, because once you've gone through your grieving process and sorted this out in your head you have a new life waiting for you and as your health improves and your mood with it, it should be better than you can even think of imagining right now  

[GFinDC]

Hi EGS1707,

You could try some avocado for protein.  And peanut butter.  Maybe not together though, ewww!

It's pretty easy to make guacamole, and it goes well with corn chips if you can eat them, or on sandwiches etc.

I don't know what kind of sport you are doing, but it might be wise to reduce strenuous exercize for a while.  Your body is trying to heal and needs the nutrients you can absorb to do that.  It's good to try and help your body heal by giving it good quality protein and vitamins and minerals and not over-stress it.  You may have noticed that sick people are often told to get lots of rest.  There is a reason for that.  Most doctors have stock in mattress companies!  Oops, no, that's not it.  Let me try again.  Your body needs energy and nutrients from foods to heal.  To build new replacement tissue takes vitamins, minerals and calories.  Which you as an untreated celiac are not an expert at absorbing.  In fact, as an unhealed celiac, you are lousy at absorbing nutrients!  Something has to give, and you need to decide if it will be your health, or your lifestyle.  The longer you deny your body the rest it needs and the nutrients it needs, the slower your healing will go.

You can read up on vitamin deficiency related illness on the Britannica website link below.  They even have nifty names for several vitamin deficiency related illnesses like beri-beri, pellagra, scurvy and ricketts.   It used to be people didn't know what vitamins were, or what caused these diseases.  But dense as human beings are, we did eventually learn.  So now we know that starving our bodies of essential nutrients is somewhat on the deadly side of things.  Or at least the unpleasant side.  As a celiac you are more susceptible to deficiencies by a longshot than the average Joe.

I think you are still doing a gluten challenge?  If you are, then you might benefit from taking extra or at least moderate levels of the nutrients listed below  by the U of Chicago celiac center site.  Their list doesn't say anything about fats not being absorbed well, but that is also a problem,  Your body needs fats to absorb some vitamins and also for energy.  But celiac damage can also make it hard to digest fats.  You may be getting the idea that celiac is kind of a serious nutritional issue.  You'd be right there.

There are plenty of reasons for you not to be feeling well with uncontrolled celiac damage.  Surprisingly (not) our brains also are dependent on nutrients, especially B-vitamins and fats.  Our brains are actually big balls of fat laced will zillions of nerve cells.  So not being able to absorb fats well and B-vitamins well is a bad thing for our brain thinker thingies.  So no wonder you don't have a bright and perky attitude every day!  You are ill!  And probably suffering malabsorption issues.

Plenty of us have had problems with nutrient deficiencies and malabsorption affects.  I've had more than I wanted for sure.  But I feel much better after learning to take care of my body better and giving myself time to rest and heal.  We only get one body in life, so taking care of it is pretty important IMHO.  It's not like you can grow a new one (assuming your middle name isn't Frankenstein here).

https://www.britannica.com/science/vitamin-deficiency-disease!

************************************************************

http://www.cureceliacdisease.org/faqs/

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015

************************************************************

[egs1707]

@Jmg appreciate the thought but I have no time for counsellors, simple fact is they can't change the fact of this evil illness and what it's taken from me. They haven't got it, don't have to live with it and can't possibly understand. That won't change, I hate my lifestyle now and hate it more with every passing day - a living hell, especially for a young person who should be enjoying life not facing ill health and a 30% chance of no recovery \ early death. 

Health-wise I'm on a downward spiral right now and there seems to be no respite. Arms are getting weaker and weaker, pains in the shoulder getting worse by the day. Having read what shoulder pains can signify I'm further worried as if my arms and leg muscles hurt and heart is a muscle... well... doesn't bear thinking about.

The paleo diet fix often given on here and elsewhere won't work for me as a vegetarian. I've read on here about cutting out dairy, oats, grains, potatoes, tomatoes, eggs and all gluten-free foods, that leaves me with practically nothing so again what's worse... eating and feeling bad or slowly wasting away instead?

The medical profession are the worst in all this, seems the ones who are in the know are just after my money and the rest are either poorly educated or simply don't care and are quite happy leaving me to my fate.

@GFinDC I see where you're coming from but if I have to give that up then I don't see the point in carrying on with this. If the gluten-free lifestyle means giving up everything that's enjoyable in life I may as well go back to what I was eating before, even with full villi damage I never felt as bad as I do now at any point prior. What's the point getting healthy years later if you end up alone and lose everything that you enjoy doing in the process?

Gluten challenge ended back in November so that's all done, even during that when I felt bad it wasn't as bad as I am now. Already on various multivitamins and now calcium supplements as well with very little benefit thus far.

B12 deficiency is a distinct possibility as a vegetarian as well, again those were fine while I was eating gluten yet the moment I cut it out to supposedly help it then triggers deficiencies? Can anyone give a logical explanation to this as I just don't get why I feel worse now and as you can probably tell it's really getting to me.

Now the last thought some of you might have is "hidden gluten"... well if there is I'm stuffed as I'm as careful as I can be whilst living a normal life in terms of work, social and living in a shared home. Whatever I'm exposed to now is how life will be in future short of retreating into some sort of stay-at-home-gluten-free bubble... which is no sort of life and at that point I'd rather go back to eating gluten foods and accept the consequences.

[Jmg]

Ok, I don't want to play amateur psychologist and I fully respect your decision, so this will be my last contribution to the thread, but when you say this:

2 hours ago, egs1707 said:

I have no time for counsellors, simple fact is they can't change the fact of this evil illness and what it's taken from me. They haven't got it, don't have to live with it and can't possibly understand.

it suggests that you don't have a good handle on what counselling actually is. Neither they nor indeed you can change the facts of celiac, but they may be able to help change the way that you look at it. Ultimately they don't need to understand how to live with it, you do, and a good one can help with that. 

As I said earlier, you're in the middle of a grieving process but it's an unusual one. If a relative had died you'd have understanding from all around you, but that's not the case because most people don't understand the ramifications of a diagnosis like this. You're grieving for the life you had and expected to continue to lead, the certainty, the freedom to go anywhere and eat whenever, the choices of foods etc.  All of a sudden they're not available and your world is suddenly both smaller and more hostile. Regardless of your current physical state it's a shock to the system. At present you're maybe moving from denial to anger, it's totally understandable and believe me I and many others here can empathise.

At the same time you need your mind in as healthy and positive a state as possible, because there are obstacles to overcome, new knowledge to take on board and healing to accomplish and that happens a lot better with a positive outlook. Reading your posts I'm not sure that seeing all the different ways that people may be affected is helping you, you may be better off taking a break. I did  some time ago. 

It doesn't need to be a living hell, indeed in time it won't seem that way. You'll get there eventually as I'm hopefully doing also, but maybe you'll get there sooner with a little help. Sermon over! I wish you the best of luck and hope you're feeling better soon.

 

[egs1707]

On 11/01/2017 at 11:33 PM, Jmg said:

Ok, I don't want to play amateur psychologist and I fully respect your decision, so this will be my last contribution to the thread, but when you say this:

it suggests that you don't have a good handle on what counselling actually is. Neither they nor indeed you can change the facts of celiac, but they may be able to help change the way that you look at it. Ultimately they don't need to understand how to live with it, you do, and a good one can help with that. 

As I said earlier, you're in the middle of a grieving process but it's an unusual one. If a relative had died you'd have understanding from all around you, but that's not the case because most people don't understand the ramifications of a diagnosis like this. You're grieving for the life you had and expected to continue to lead, the certainty, the freedom to go anywhere and eat whenever, the choices of foods etc.  All of a sudden they're not available and your world is suddenly both smaller and more hostile. 

You pretty much hit the nail on the head there, no counsellor can change this situation, in the same way the bereavement counsellor I tried many years ago couldn't bring back the relative who was no longer here. The loss of health, which I always feared happening doesn't change and there's no good to come out of this celiac, physically seem to be getting worse each passing day.

Don't think I've done denial as I was convinced pretty early on something was wrong. Every now and again I try and forget about the nightmare I'm living but once distraction passes I snap back to the hellish reality of where I'm at now.

Appreciate your input and best wishes in any case

On the clinical side managed to get some tests done by a junior doctor who hasn't yet been indoctrinated into the budget-first ways of the modern NHS. Had them done yesterday so results next week...

• B12 \ folate
• calcium \ bone profile
• phosphate
• vitamin D

My last B12 test was May '16 and was in the 400's, from what I read that's the lower end of normal so will be interesting to see if it's dropped as it seems to match up with some of the side effects I've been experiencing, along with malabsorption and being vegetarian so would make sense.

Hoping one of these vitamin levels theories provides some answers and in fact it's not glutening or leaky gut causing the muscle & joint problems. Otherwise it's onto seriously scary diagnosis I can't even bear to think about like ALS \ MS.

[Jmg]

Against my better judgement I'll reply  To be honest I wish I could speak to you in person because there's a limit to how effective communication over a forum can be and from what I've read you are almost exactly where I was not so long ago.

Let me say that I think you're clearly extremely bright and have amassed knowledge on this. I also think however that your thinking at present is clouded by your mental state and unless and until you can acknowledge that you'll struggle to move forward, IRRESPECTIVE of your current physical condition. 

At present your intellect is pointed in one direction, you take a post like mine above and focus and fixate on the beginning, the negative. You then avoid the actual point I was making, the positive. Just look at the passage you chose to quote and then look at my post in it's entirety.  You're trapped in negative, circular reasoning and any information which comes in which doesn't support or conform to that world view is ignored, downgraded or discarded. 

The same thought processes are apparent throughout your posts here. If I had time I'd trawl through them and provide examples but in want of that I'll simply ask you to trust me that they're there. I'm sure others will have seen them as well. 

Just think for a second about this forum. There are people on here in far worse situations than you or me, with more restrictions on their diet, with family members dependent on them for support, with additional physical symptoms or actual auto immune diseases. They are living their lives, having children, enjoying their working and home lives, some of them will tell you that celiac is the least of their worries compared to other issues. What's the difference between them and you (and me to be honest?).

Please look again at the entirety of my last post and ask yourself why you seized upon the negative? I think you're depressed, your viewing everything through a negative prism and although it's mostly unlikely that a strangers words on the web will pierce through that, unless and until you address this aspect of your healing I think your struggles will continue. 

Again, sincerest best wishes and please don't take offence. My words, whether accurate or not, are offered in friendship and a recognition that we're on a similar journey.