egs1707
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On 03/09/2017 at 2:35 PM, Gluten_free_01 said:
Ok, I see. But at least you’re strong enough to take celiac seriously and not live in denial. You said your antibodies went down significantly and that’s also a great sign and a proof that you’re responsible and self-disciplined. Look at it this way
No chance of denying it after I pretty much found it and the result was well beyond any doubt that's for sure. The tips from here and avoiding a few of the dubious ingredients like barley malt, oats etc. no doubt helped get the numbers down.
Trouble is I've got to a point where I'm contemplating an impossible choice...
- stay on this miserable gluten-free diet to get "healthy" (so the theory goes anyway) but at the cost of almost total social isolation. It's took a huge toll already and my life on gluten-free is far worse than it was a year or so ago even when I was in the midst of the automimmune symptoms.
- take a lot more risks, probably go down the "cheating" route from time to time as well to fit in socially knowing full well the implications. No need to lecture me about the consequences, I've read the full horrifying list but at least I get some short-term enjoyment as opposed to pretty much none on the gluten-free lifestyle.
Both pretty bad options, just haven't quite figured out which is worse yet.
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On 12/09/2017 at 10:16 AM, Gluten_free_01 said:
I haven’t had an endoscopy/biopsy myself because I don’t trust doctors anymore – there are risks involved such as intestinal perforation and they ask you to you sign an informed consent so it would never be their fault if something happened. So I don’t even know if I’m a ncgs or a seronegative celiac. My symptoms have improved so much on the gluten-free diet that I don’t care about a formal diagnosis anymore.
As you’ve probably noticed, I’m not a native English speaker. I’m glad that at least my English is good enough for me to be able read/understand everything I want to know about ncgs/celiac. You guys probably take this for granted :) If I were to rely on doctors and didn’t do my own research, I’d be screwed and still in pain 24/7.
Yup that form scared the **** out of me even though I had an experienced doctor performing it. Being in a hospital operating theatre is also an experience I don't want to revisit in a hurry. Tbh the formal diagnosis doesn't really change much, in the UK it used to be a way to get discounted food but that's all gone now so apart from confirming what you already suspect there's not much to be gained from my experience anyway.
Your English is fine, had you not mentioned it's not your native language I'd never have guessed
Celiac seems very poorly understood, diagnosed and supported by the wider medical profession and it seems it's down to the good folk of the Internet to help. Ignorance is worryingly widespread and I'd be in the same boat as you say above had I not continued to Google my symptoms and piece the puzzle together, in defiance of the doctors who said there was nothing wrong apart from anxiety
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On 08/09/2017 at 5:44 PM, Gluten_free_01 said:
In my opinion, the villi are healing and repairing. However, it’s not possible to say how much they have healed and repaired based on blood test results alone. For example, if tTG is ‘X’ now, it’s impossible to say that the villi damage is equal to Marsh grade ‘Y’ now. The only way to know for sure would be a repeat biopsy, I think.
That tallies with something I read elsewhere the other day actually. No way I'm going through the biopsy again unless there's some serious concern driving it as I found the process very stressful. Even then there's not much I could do about it anyway as the AIP diet (last resort if healing isn't working) is pretty much incompatible with being vegetarian so in a way may be better off not knowing.
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Quick question before getting onto the quotes - with antibodies reducing significantly but still enough of a positive result to be a diagnosis where does that leave the villi healing process? Would they be repairing as the levels are coming down or is the presence of antibodies mean the villi are still likely to be "flat" as there's still something there damaging them?
On 26/08/2017 at 11:26 AM, ravenwoodglass said:Ennis gives some excellent advice. As to the dating issue I have seen dating sites for folks with Celiac and even for people with Aspergers. I don't know how active those sites would be but maybe those would be helpful in finding freinds with the same problems that we have.
Been there tried that, results were... interesting... 10 people in the entire country, only 5 active profiles and nearest one was over 100 miles away and didn't actually eat gluten-free. Needless to say the site didn't get any money from me. Never mind plenty of fish in the sea, it's more like a puddle now
On 26/08/2017 at 10:19 AM, Gluten_free_01 said:Maybe I can help with a female perspective. I’d never reject a guy just because he has celiac/NCGS
Think you have a better attitude than most I've come across in this year or so since getting diagnosed. It tends to go that people (in general not just dating) don't mind gluten-free eating, in fact a fair few people have said "oh yeah I've tried that, loads of options in restaurants now", which all promising until they go "but you're not a celiac are you?!" then the attitude shifts significantly
On 26/08/2017 at 10:19 AM, Gluten_free_01 said:On an instinctive level, I am looking for a guy to protect me
Think that's hit the nail on the head of why I feel down on the situation. Celiac means I'm pretty much the opposite now having to run away from restaurants, meals etc. fearing insignificant (in the eyes of others) things like cross contamination which hardly comes across as traits of a strong protector. Physically it's took a toll too, feels like I've aged 10 years in 1 year at times.
On 27/08/2017 at 10:32 AM, Gluten_free_01 said:I just want to add one more thing.. to give you an example..
There is no logic in this:
The fact that 99 people out of 100 don’t have celiac doesn’t imply that 99 people out of 100 are fit and well. Almost everyone has some kind of a health issue.
Imagine 100 people.
Person no. 1 has diabetes. No. 2 has thyroiditis. No. 3 is infertile No. 4 is disabled. No. 5 has cancer. ... ... ... No. 100 (you) has celiac.
Do you still feel like the unlucky one?
Again, I don’t mean to offend you. I’m just convinced that a shift in your attitude would help you a lot.
Good luck.
Yeah I phrased that badly, meant only 1 in that 100 has the OTT celiac restrictions. Funny enough when I was getting diabetic-esque symptoms the other week I had a read around their forums and there was a bit about celiac on there. People were saying they'd prefer diabetes to celiac as at least there's a bit of leeway with sugar management. Tbh both scare the hell out of me long-term but was an interesting perspective.
On 26/08/2017 at 1:45 PM, GFinDC said:There are also celiac support groups in many places. Sometimes they sponsor group meals for social interaction. And often they have ideas of safe places to eat. Check Facebook for you area. Or local hospitals or search the web for support groups. If you can't find a group then start one on Facebook yourself. That's easy to do.
Yup good call, found those a while back which have been useful.
On 26/08/2017 at 10:30 AM, Ennis_TX said:Yeah it gets a tad depressing, I normally just bring my own food, or do not eat out. I have started inviting people over and cooking gluten-free full meals and just host get together. Yesterday I did one with wraps, Had Eggs and chorizo seasonings, Mexican rice, re-fried beans, and had lettuce scoops, bean chips, and coconut wraps with salsa and taco sauce. Sort of make your own wrap or dip plate, quite enjoyable.
Sounds good in theory but given the attitudes I've had off people so far they wouldn't go anywhere near a celiac-hosted gluten-free food evening lol. Tends more to be I have to go to where the event \ people are as they won't go out their way otherwise. In a way I kind of do get it, if the boot was on the other foot chances are I wouldn't be any better at being supportive.
On 26/08/2017 at 1:49 PM, Jmg said:Otherwise you can find yourself going round in circles, never really improving.
It feels that way, regardless of what I do it's the attitude of others that makes or breaks things socially, which has what has really been noticeable since the diagnosis. Can't see celiac ever really being accepted unless some miracle happens on the research side and cross-contamination worries can be removed from the equation.
On 26/08/2017 at 1:49 PM, Jmg said:As ever, best of luck
Thanks, I'm gonna need it
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I've had the results of the 6-month levels check now (under a new doctor fortunately who is actually being proactive rather than denying me the tests I need)... gone down from off-the-charts to "weak positive". So, as expected after a short timescale not healed but tTg going in the right direction. Other tests for the common autoimmune conditions come back normal as well which is a relief.
However on the flip side socially this lifestyle is every bit as bad as I feared back on page 1. People are horrified by the condition when you're forced to explain what "even a little bit" of gluten does and they back away after that. Despite what I've read on other posts from my experiences people don't like having one member of the group not eating and do make comments about it. Eventually they just decide not to invite the person who can't \ won't eat.
Dating is also finished now too, the mix of not being able to eat out and having to reveal the condition elicits a response of thinly masked horror \ disgust from the date and at that point it's all over. Had it happen enough times now and there's no good way to dress up celiac and sadly people don't want to get involved with it when there's 99 other people out of the 100 who are fit and well. Having to accept that fate is as painful as the physical symptoms were 9-12 months ago.
So while physically there may be some improvement my world is so much smaller and life so much less enjoyable. In effect celiac is the perfect bully... there's the names and labels ("disease" particularly hurts), the constant fear of being caught out with no margin for error, the physical pain inflicted by a gluten reaction, social isolation and finally if I don't do what it says it will eventually kill me.
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One of the things that I noticed en-route to getting diagnosed was that I had to loosen my belt whilst driving or even changing to looser trousers due to the discomfort. Has almost (not 100%) gone back to "normal" since going gluten-free.
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On 2017-6-25 at 0:42 AM, flowerqueen said:
I agree with the above comment regarding xanthan gum, personally, I cannot eat very much of it as it has adverse effects - but nothing to do with gluten, so I try not to eat much gluten free bread, and eat more rice instead. Also, I found that after I'd been gluten free for some time, I started having food intolerances, and had to keep a food diary to find out what was causing them.
It's funny you mention this as I've been feeling really bad the past few days and couldn't figure out why but vaguely remembered reading a post on here about Xanthan Gum. Sure enough it's in the bread I've been having and one or two other items.
The alternative used seems to be E464 Hydroxypropylmethylcellulose, which I hope has less side effects
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15 hours ago, Jmg said:
It sucks when you've taken precautions and they don't pan out. Take heart however, although it feels like you're back to square one but one exposure doesn't negate all the healing that you've gone through. Eat simply and safely for now and get back on track. You should feel better soon.
As for eating out, it's the same as when you learned to ride a bike. You dust yourself off, learn a lesson about that venue and get back on the bike. You need to balance risk and reward. Too far either way isn't the way to go.
Hope you're feeling better soon
You're right on the extremes, I'm sitting in a gluten-free food festival right now and still unsure if to eat anything which I guess means I've hit the extreme end of the scale.
Seem to be noticing the recovery pattern over the course of 6 weeks or so after a gluten hit. Will be very interesting to see what the blood test readings come out like when I eventually get them done again.
And thanks for the good wishes
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Reality check in the past few weeks, looks like I got glutened at what should be a "safe" restaurant for gluten-free and gone right back to the beginning again recovery-wise
Now too scared to eat anywhere and turning down social opportunities because of the food issues, what a miserable way to live this is.
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Vegetarian here too, celiac really makes it tough as all the Quorn meat replacement products bar the odd one or two are out
Then there's all the scare sites saying only paleo type diets will repair your insides but guess what they're all heavily meat / fish based.
@Ennis_TX has some good ideas for meals
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What kind of meals are in that regime? Wondering what else I could have for lunch but most of these protein / fat diets are all animal product based.
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Random question for you all, did your appetite change over time after going gluten-free?
At the moment I feel like I can eat and eat and eat. Not putting on any weight as such but holding steady at least.
May also be because my activity level has gone up a *lot* recently (beginning to catch up on me now actually, feeling a bit tired at the moment) but has anyone experienced something similar?
Btw @Ennis_TX did I just see on another thread you make your own garlic bread? Be very interested to hear how you do that
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Also already using my experience of having done the gluten-free diagnosis route the hard way to help some others I've been speaking to elsewhere. May already have saved a few people by recommending them to vitamin tests, how to get through gluten challenge and so on.
Giving something back after getting the help here, that's what it's all about right
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So it's been a while since the last post, nearly 2 months in fact (time flies!)
The vitamin D pills I mentioned on the previous page have been a revelation
Started noticing them kicking in about 2-3 weeks after taking the first one, regained muscle strength and that inflammation feeling has reduced too. Internet research beats the GP once again (who refused me the vitamin panel tests until overruled when I made a complaint). Also had TSH done around the same time, came back normal so they say the labs won't run the other tests if that's within range.
Had a sinus infection around that time which took the best part of 2-3 months to go, again noticed a positive change once that cleared up in terms of head pressure etc.
Seen a second dietitian who gave a few tips about food combinations for nutrient absorption but otherwise was happy with current progress and to check back in 6 months. Similar feedback from the gastro specialist - will have a repeat tTG soon to see how the levels are looking as he expects them to have dropped a bit by now.
If I had to put a number on it I'd say I'm back to about 70% of where I was before all this started. On some days a bit more like 75% but it varies. There may well be some additional food intolerances but I can't be doing with those right now so I'll carry on as I am unless something really obvious begins to stand out.
I've had a few projects on recently that have helped occupy the mind away from the celiac scare stories which has been helpful. Did have a bit of a relapse the other day when that (slightly dubious research) link to diabetes came about as I've always feared that particular illness.
All in all celiac still sucks, I still hate it but making some progress in trying to get my life back...
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Can really identify with this as I had similarly nasty comments early on too, sad reality is people pick on anything that makes you different or what can be seen as a weakness.
Those comments cut even deeper in the early stages when you feel awful and people are just rubbing it in, especially as this condition comes on through no fault of our own (which is what I find hard to take personally).
All you can do is cut those people out your life as you don't need that extra aggravation on top of what's a restrictive and frankly horrible lifestyle change. You certainly find out who your friends are and conversely who needs kicking to the kerb asap.
Karma gets some of the nasty ones back eventually I guess if you believe in that...
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Know exactly how you feel, it's like being hit repeatedly with a reality that feels like a nightmare you can't wake up from.
Definitely get your vitamin levels checked and ignore any doctor that says it doesn't need doing. Hopefully you'll find better health professionals than I've been subject to but it's one thing you also learn that many doctors don't really seem to know how to treat this pre and post diagnosis.
Can't say I have any surefire answers for the social and lifestyle changes as I'm still struggling with it too but you're not alone in how you're feeling.
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On 24/01/2017 at 7:24 PM, Jmg said:
One of the strangest things I found after going gluten free was that hangovers were a breeze! I used to have horrendous hangovers but could pour cider down all night and the next day was a walk in the park!
Cyrex labs in the States were offering testing, you may be able to get a referral if you're willing to pay? It was something I considered when the NHS tests weren't as broad as the US labs were offering.
Yeah I think there's a company over here that does Cyrex tests on demand so does sound like an option. Again quite a bit of Internet self-diagnosis going on to be asking for the tests but thyroid does seem an overlooked possible side-effect so may be worth it for peace of mind.
Keep being tempted by the food allergy Array 4 (think that's what it's called) but I waver between wondering if it's a test based on cutting edge research or pseudoscience that I could get similar results by closing my eyes and ticking random boxes instead
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Had some blood test results back today, B12 level is normal but low in vitamin D.
Been given some 20000IU supplements to get it boosted up, according to the doctor can be a source of the muscle soreness so fingers crossed it'll help.
Also been sent for a repeat TSH test but told the labs will never run the T3 / T4 tests when TSH is normal. That seems to go against a lot of the experiences I've read where one can be off but TSH returns normal, thoughts?
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45 minutes ago, GFinDC said:
Ahh well, there is reasonably ok gluten-free beer available now
Cider seems to be where it's at now, doesn't seem to affect me anywhere near as much as beer did (kinda makes sense now I guess, pint of gluten please?)
47 minutes ago, GFinDC said:There is a possibility of additional food intolerances developing also. That can make things confusing if you know you are definitely gluten-free but are still getting sick. The thing we use to find additional food intolerances is an elimination diet.
Yeah that's the thing I'm hyper-vigilant watching out for at the moment, perhaps too much so. Being vegetarian complicates it further as I'm looking at the calories for the gluten-free replacement meals and while they're healthy I'm struggling to hit the 2400+ I need to maintain \ gain weight from 3 meals (well 2 really as lunch isn't really a full one)
49 minutes ago, GFinDC said:Just pm me your address and I can shoot a box of 20 or so cats at you to enjoy! Yay!
You'll have to send them via airmail, or for 20 I think we're talking private jet territory (!)
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17 minutes ago, Rowan13 said:
I've been following this thread somewhat and have been really feeling for this guy and hoping very much that he will find some answers and feel better very soon.
Thanks, me too, with enough information I'm hoping to piece the puzzle together in a way doctors seem unwilling to put the effort into doing (something that really has surprised me during this process)
19 minutes ago, Rowan13 said:Someone who just found out he may have this condition (I'm sorry, not totally clear at the moment if he has been diagnosed or is certain for himself, but I believe he is)
Definitely got it unfortunately, blood test, two gluten challenges and biopsy doesn't leave much doubt
20 minutes ago, Rowan13 said:I can also understand about having to fight with blase medical people when it should be them fighting for your health. I can understand being scared, upset, worried.
Couldn't put it better myself!
20 minutes ago, Rowan13 said:The op hasn't given up and are in fact actively taking steps to find solutions.
Won't stop until I figure it out as I'm sure there's more than just gluten issues going on, even if it is as simple as a vitamin shot (fingers crossed that theory proves correct next week)
12 minutes ago, Rowan13 said:I wanted to add that I don't mean all of the last posts or every part of them, just some parts of some of them- to me- seem a bit harsh and possibly inappropriate. Thanks.
Without putting words in anyone's mouth I'd say it's more a case of "tough love"? As above only one troll tried it on with a nasty comment and I sent them packing.
24 minutes ago, Rowan13 said:I'm pretty sure the op has been polite and has often thanked people or said they appreciate the advice given
Hope that has come across (and seems to based on your post) If anyone thinks otherwise that was never the intention.
25 minutes ago, Rowan13 said:Anyway, I wish everyone well on this forum. I truly do. I guess this is the last you'll hear from me probably. Take care.
Hope you stick around Rowan and that things pick up for us both soon, quote this back at me if you're reading it
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22 hours ago, kareng said:
I have to say I agree with this. I think this poster might have a lot of other problems and Celiac is just the one he or she is focusing on.
Celiac is the only problem that's single handedly destroying my life right now so would respectfully disagree with you there, sorry. Was actually reasonably looking forward to 2016 at the time before all this started, never saw it coming that's for sure.
6 hours ago, squirmingitch said:Please read this with an open mind. My intent, truly, is to try to help you.
Sure, I can safely say that's been the aim of everyone on this thread.
6 hours ago, squirmingitch said:You talk of how quickly your friends dropped you when you said you have a problem with gluten and how they made fun of you & made you the butt of jokes. We all said those kind of people are no friends at all & you are well rid of them. Now I rethink that and have to think your negativity for so many years is the true reason these people have turned on you.
Nope, they're just the kind of people who make themselves feel better by belittling others. Took me a long time to see that but it's pretty clear to me now looking back.
6 hours ago, squirmingitch said:I have rarely "seen" anyone as consistently negative as you. You take every single thing in the most extreme negative possible.
Guilty as charged, doubly so at the moment as this illness has been nothing but one massive bundle of negative for the past year or so now. Had a bit of hope around 10th December that things were improving (see my post at the time that was a bit more optimistic sounding) but it's hit me for six since with the new symptoms despite doing the same things that seemed to be working before.
23 hours ago, Gemini said:If you are having this much trouble with just being gluten free, then the aging process will push you over the edge
Part of the reason I'm so down about celiac likely taking away the best years of my life through illness. Already instead of planning holidays, dates etc. life is revolving around doctors, hospitals and blood tests.
6 hours ago, squirmingitch said:Can you try to say ONE good thing each day?
I can and do, just not about the celiac situation
5 hours ago, manasota said:4 You would be best served if you could try some antidepressants--if only temporarily! This is no crime, no sin. It is merely human. Give yourself a break. Plenty of people take them. I'm a pharmacist and used to dispense PLENTY of them. Nothing wrong with them.--especially temporarily--or permanently, if needed.
Probably not far off with the depression theory but I wouldn't go near those medications if you paid me, seen enough people with horrible side effects from them who have got off them and now say stay well away. Relaxation and breathing techniques however I do believe can help and are much more natural.
5 hours ago, manasota said:6. Once your mental state feels better, you might give a look at Mast Cell Disorders. Good info on this site by neonatologist who has Celiac Disease and Mast Cell Disease. This could be your answer. It has helped other Celiacs who could not get well only by eliminating gluten.
Just had a quick Google and interesting to note the DEXA scan can help with diagnosis. One more thing to use to prove to the doctors why it needs to be done regardless of my age (that's their current excuse for not running it).
Actually have had an ultrasound on the abdominal area back when it was uncertain what was causing the pain, came back normal so hopefully that's a good sign.
5 hours ago, manasota said:p.s. Please go easy on me. I wasn't diagnosed till 60 years old. Gluten free 7 years and still working day-to-day to be healthy.
For sure, your post is thoughtful and well written, the input is appreciated
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Really need these blood test results to come through now as these latest symptoms aren't good at all.
Seems any minimal exertion (not talking sports, more like moving stuff around etc.) makes my muscles feel weak and start shaking inside (can't seem to visibly see it but certainly feel it) then get a feeling of unease \ dread in my stomach, followed by tight head and soreness in my back near the shoulders.
It's come on in the last few weeks so seems to be directly linked to the gluten-free change. I can only point at B12 as it matches so many of the symptoms but anyone else identify with this \ suggestions?
On 15/01/2017 at 1:20 PM, Jmg said:There is a lot of 'woo' out there and is does none of us any favours.
That is definitely true, seems to go from one extreme to the other. Maybe there's a gap in the market for some straight talking (certainly many doctors could do with a checklist for how to diagnose the damn thing in the first place!)
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.
Think I might be able to scale it back a bit if I felt like the changes were helping produce an improvement. Apart from a small spell for a week or so at end of December gluten-free seems to be producing the opposite effect and making me worse. Need to crack what else is going on so I don't keep feeling like I'm on a constant physical decline that even eating gluten never caused.
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1 minute ago, Ennis_TX said:
I feel on this quite alot, I live the bubble life, up and down days, very limited. Been like this for years, I still have hope, I am trying to run my own gluten free allergen friendly baking, and snack business. Bit of a issue getting money with my health, situation but I started a fundraiser that is slow, and hoping I run into a philanthropist to jump start the food trailer idea, lol. I live each day with set goals, Work out, Create something new in the kitchen, clean the house, run a errand and do something productive, each day. I post my successful recipes online on blogs/forums. I enjoy and make myself useful by sharing my experience with this disease online with the community hoping my fails, and success might make it less trouble for someone else with similar issues (really helps to know the stuff I go through might benefit someone else).
As to dating, I wish I was allowed to show you but I can not link personal stuff per rules. But I have profiles on a few dating sites, where I first state I have celiac disease and would require that anyone else I intend to date also avoid gluten either for medical or personal reasons or be willing to change to this. I have had 3 girls I have met and dated in the past 2 years, our personalities were the issues, and one of them is still a good friend. Its not impossible just harder, to find a good match.
As to healing, I have been able to introduce some foods back in, and have more up days as of late. Started hitting the weights just this week again in a attempt to bulk up. It happens just really slow and you have to stick to a gluten-free diet.
Interesting, I won't even say the "c word" as it's just got such a horrible ring to it and the word disease is even worse. I stick to some wooly phrasing around gluten when I have to explain to people as that's not quite as threatening.
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5 hours ago, GFinDC said:
@egs1707
Getting better from celiac damage isn't as simple as taking a bunch of pills (drugs) and following the latest exercise craze, whatever that might be. To recover from celiac you actually have to expend some personal effort and make some changes to your diet that many people may not even consider under usual circumstances. Yeah, lots of people have it easier. Lots of people won't have to make the sacrifices you'll have to make. Lot's of people aren't you though. You are part of the 1% of society that is different, that has a life-long condition called celiac disease.
You can't change that, and nobody else can either. The thing you can do, is learn to live with celiac disease successfully, like many people on this forum have done. You can learn to eat healthy and treat your body with respect. You can get better because you accept your limitations and don't let them stop you from living. You can adapt because you are not unable to learn and grow. If that wasn't true you wouldn't have got to this point.
It took me 5 years to get reasonably healthy feeling. It was sure a lot of fun along the way. But I feel pretty good now and I probably have a lot more food intolerances than you do. You aren't an expert in living with celiac disease right now, you are a beginner. Living with it does teach you exactly that, how to live with it. I know being diagnosed with a life-long condition can be overwhelming and a bit depressing. But this is the best life-long condition I can think of to be diagnosed with too. Really we should shoot up rockets and release balloons when we are diagnosed.
Well. maybe not. I have 1 brother who is slowly going blind from diabetes complications, and another who is half blind from retina problems. I have a thyroid cyst that makes it hard to swallow so I always carry a bottle of water with me to wash food down. And other assorted pains and problems that aren't worth mentioning. Plus we have 20 or more cang dats , now that's a real problem!
Whine all you want, then look in the mirror and decide you are going to live with this condition like all of us older wimps do. No, it may not be easy street every day. But life isn't always about coasting and cruising and having a good time. Sometimes its about perseverance, struggle, determination, and pluck.
Nothing wrong with cats, the more the merrier
The 1% thing I why I'm so down on hopes of recovery. If I'm unlucky enough to be in that percentile then 33% chance of never healing doesn't sound good odds to me.
In a world where I just want to fit in I now feel like in order to live I'm going to end up an outcast, defined and isolated by the celiac label. It's mortality put right in front of your face and it's, frankly, terrifying.
Overwhelmed and unable to accept
in Coping with Celiac Disease
Posted
Ennis your passion for leading the gluten-free lifestyle certainly shows through,and although I wouldn't necessarily advise following through the punching method I get what you're trying to say. On the flip side I could equally show you the shocked \ disgusted reactions people display when the celiac secret comes out... and trust me it always comes out one way or the other. As for bringing your own cup to a bar over here well... let's just say that wouldn't go well. Don't think I haven't tried the drink-only date, give me some credit lol but even if that goes well food is up on the next one and the reaction at that point is always the same.
A slight variation on your quote I find although you can exist and eat enough food to get through the day it's not living. The living part is being able to pop into any random restaurant with your friends \ date spontaneously without carrying out a plastic box of food or worrying if a jacket potato has been cut with the wrong knife. Not to mention having to admit to celiac in front of people and watching \ hearing the sarcastic reactions for the hundredth time.
It's not so much that, it's the change in attitude from people that's done for me. It's like celiac pretty much killed my old life socially and I'm left with this rather empty one instead where people back away because of all the lifestyle restrictions.
The symptoms part is interesting too, I didn't have the serious ones that long relative to some on here and the side effects since have actually been as bad if not worse at times. Based on having done way too much research it appears they may well not improve that much further for me as if the gut healing \ inflammatory foods theories (lectins etc.) are correct I'm a bit stuck as AIP \ SCD with their heavy meat focus are non-starters.
The fact the levels have dropped so significantly with little improvement physically is a bit weird - although I'll wholeheartedly agree that the amount of uncertainty of what exactly is causing xyz pain and all the potential related autoimmune illnesses that can randomly activate themselves is a huge source of anxiety. The future scares me now frankly.
Not quite sure how you misquoted that so it looked like it came from Ennis but it's a simple statement of fact, gluten-free diet has caused as many physical issues as it's solved and the social toll is real. Sorry it doesn't fit your timeline of how the body is meant to heal or how the patient is meant to recover. Looks like celiac didn't get the memo
And on that note perhaps time for mods to lock the thread, doesn't seem much more constructive discussion to add here.