Jump to content
  • Sign Up
egs1707

Overwhelmed and unable to accept

Rate this topic

Recommended Posts

Hi Egs1707,

You asked about other food intolerance reactions.  I can only tell you about mine.  Others may have totally different reactions.  Actually, when I first went gluten-free, it seemed like I reacted to everything I ate.  But I now think that was because my gut was still healing and I had some nutrient deficiencies to overcome.  In time, my reactions began to fade but I did identify several foods and food groups that I couldn't eat without having symptoms.  However, my life hasn't ended by not being able to eat those foods.  People are pretty adaptable and can learn new things.   Like how to eat different foods.  That may not be super fun, but it is necessary for us.  And it's just food after all.  The main thing is to have enough of food to eat and be healthy.

OK, dairy is probably my worst symptom producer (besides gluten).  I get C and bleeding and pain from dairy.  I most likely (IMHO) have what the call casein intolerance, since I can't eat milk products (lactose) or cheese (casein).  Many people have just lactose intolerance though, and can eat dairy with the help of lactaid type digestive aids.

Soy and nightshades cause me C and D.  Soy has a cumulative effect that gets worse over time for me.  Carrots, celery etc just cause a few days of symptoms.  But we are all different and symptoms will vary.    You may not have any additional food intolerances develop.

Your friends are not all that unusual I don't think.  Lots of people don't take celiac disease and the gluten-free diet seriously because they see people jumping on the gluten-free diet for spurious reasons.  Like for instance someone who decides to eat gluten-free because a celebrity does.  Or they see someone who is a casual gluten-free dieter eating gluteny foods sometimes.  So there is somewhat of a resentment at times for people who eat gluten-free.  The causal gluten-free dieters do a disservice to people like us who have to eat gluten-free to maintain our health.  gluten-free is not a fad diet for us, but a medical diet.  Many people don't take the gluten-free diet seriously, ,even though they may not even understand what gluten is.

Some people with celiac disease don't even have symptoms from eating it.  Maybe RIK is one of those people.  I can tell you though EGS, that I have improved health by an enormous amount over the years since going gluten-free.  Things can get better.  It may take some time, but it can happen.

Share this post


Link to post
Share on other sites

Bit of an update...

So today was meant to be my appointment with a gastro specialist where I thought I'd start to get some answers about the next steps and what I should be doing but oh no...

...I take time off work, travel down to the clinic I was booked in with and get to front desk... "your name's not on the list"... hmmm. I sit and wait for a bit then get told "no your appointment was removed as your area isn't funded to use this clinic". Needless to say I was fuming and let them know it, the reception didn't even have the decency to get in contact to let me know the appointment had been cancelled :angry: Formal complaint going in shortly as the level of healthcare I've had right from the start of this saga has been diabolical.

Looks like I'll have to go private now as waiting times over here in the UK are getting silly now, not only is this illness taking away my future it's going to empty my wallet as well, every day a new unpleasant surprise. What makes it worse is that in my head I'd set expectation that things would start moving along now I was going to talk with a specialist in the field, now it's just another setback and more uncertainty <_<

So seeing as everyone I've dealt with in the health service so far is either incompetent or, worse, negligent I've drawn up a few next steps off my own back based on research on here and elsewhere online, would appreciate your thoughts:

Get blood tests for the following to rule out related autoimmune conditions related to celiac gene:

  • thyroid panel TSH, Free T3, Free T4, TPOAb, TgAb, Reverse T3
  • diabetes A1C
  • vitamin levels particularly D, K and magnesium (calcium, iron and B12 too?)

Procedure likely required to check gluten reaction and villi state:

  • small intestine biopsy

In the meantime I'm also doing the following:

  • ordered gluten-free magnesium citrate tablets to try and combat muscle cramps and weakness. Noticed some improvement using a spray-onto-skin magnesium product which suggests that could be an issue there
  • continue with slippery elm natural treatment before meals to help healing of gut (seems to be working for me)
  • found some gluten-free approved cinnamon sticks so I can go back to having my cinnamon & mint tea that's also used to help the digestive system. Again that was helping me back when I was getting misdiagnosed but the cinnamon sticks I had previously were labelled as "packed in a factory with wheat etc." which means they're probably not safe.

Starting to find little cheats to add some extra gluten-free protein into meals e.g. powdered almonds and counted 6-7 portions of fruit and veg into today's food intake, a little sample of meals below... not perfect but not too shabby. Some would say remove dairy but I seem to be OK with it (no obvious reaction anyway) so staying on that for now.

Breakfast

  • gluten-free porridge oats with strawberries and blueberries
  • Cup of tea

Snacks (am)

  • Banana
  • Peach
  • gluten-free muffin with tea

Lunch

  • gluten-free toast
  • Baked beans
  • gluten-free pea protein crisps (nicer than it sounds honest!)
  • Bio yogurt

Evening meal

  • Mixed vegetable stir fry
  • Small serving of chips
  • Lentil & mushroom patty burger
  • Fruit salad

Evening snack

  • Banana

Quite a few months back I was trialling this protein-shake-esque meal replacement as a way to get more nutrition in during the day in work. It's also avaialble gluten-free now so may give it a shot again with fruit mixed in https://huel.com/products/huel-gluten-free

Share this post


Link to post
Share on other sites
On ‎9‎/‎28‎/‎2016 at 4:39 PM, egs1707 said:

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

 

I'm not able to do much dairy, so I use almond milk as part of my breakfast.  You can use it as a substitute for cow's milk for pretty much anything.

 

Share this post


Link to post
Share on other sites

It's tough and scary when you find you have to go gluten-free for health reasons and not just a fad.  That first episode hit hard and fast leaving me in a whirlwind of dust.  I was in survival mode for quite some time.  The doctors all kept telling me "You are fine.  All tests came back normal".  HAH!!  As a last straw, my mom asked if I would be willing to go gluten free to see what happens.  This was end of Oct. 2015.  Unfortunately, I had the blood work after I went gluten free, but thank goodness my Ig levels were still high that it flagged it. 

I didn't think I would make it.  Those few months were almost pure torture, panic attacks with the episodes, lovely combination.  YUCK!  My emotions were a yo-yo, I'm surprised my family did not put in a locked, padded room.  I think all I did for the few months was cry and be somewhat depressed and anxious. 

Now a year later, things are a whole lot better.  My body feels healthier and stronger than it ever was.  Emotionally and psychologically things are better.   I started to go a Healing Touch practitioner mid-November, and this seemed and continues to help keep body systems in align with each other.  My family has supported me all the way.  There were moments it was dark, daunting, and yes, even a scary.  They were there through it all.  Depending on you family relationships, they can be a great resource and sounding board through good and bad times on your journey.

In reference to being vegetarian, don't despair.  You are already finding things to substitute and what works and what doesn't work.  Found a website that may be helpful for you, minus the grains portion: http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/vegetarian-diet/art-20046446?pg=2.  Also, it important to be able to read what your body is trying to tell you, especially as you start the healing process. 

There is a Person Who has helped me so much, and that is my Lord and Saviour Jesus Christ.  He has been with me each step of the way guiding and directing me.  He has also taught me quite a few things about Him and my relationship with Him.  Would love to share sometime, but I am getting off topic here.

Things will get better.  This is a fantastic forum to bounce questions, suggestions, and advice around.  Welcome to the forum egs1707!

Share this post


Link to post
Share on other sites

I feel your pain- as do most of us. I have been gluten-free for 4 years and still have lots of pity parties. But its more than that its just down right depressing like you stated in your original post. And I am sad af. Sad that my body is betraying itself.

All I can say is DON'T read too far into all the celiac crazy on the internet. It is effing scary. I was just on the SCD website the other day like what is this?! 

About makeup- I am a chick and I have never been big on lipstick so don't fret too much unless you have a fetish for gals with lipstick ;) and sadly though i am married my husband isn't entirely understanding. Yes he is supportive and yes he checks labels, but i still have to double check. And he is frustrated by my situation which doesn't make me feel much better. 

You can only do what YOU as a person can take on right now. So take a deep breath- keep exercising (totally get that it keeps me sane!) I got a decent vegan (i am not vegetarian) meal supplement shake on amazon the other day and its pretty good! makes me feel less.... empty- hungry- unfulfilled. https://www.amazon.com/gp/product/B00FYD5MVA/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1

And again try to not google too much. Honestly this website has been the best info I have found out there because its REAL PEOPLE. Not some stupid sales pitch. I literally lost it on a comments section of a "celiac diagnosis is a blessing in disguise" blog post. haha! it felt SOO good. 

Anyways hang in there and YES to microwave rice it is delicious and way better than any i have tried to cook :)

Share this post


Link to post
Share on other sites

I feel your pain- as do most of us. I have been gluten-free for 4 years and still have lots of pity parties. But its more than that its just down right depressing like you stated in your original post. And I am sad af. Sad that my body is betraying itself.

All I can say is DON'T read too far into all the celiac crazy on the internet. It is effing scary. I was just on the SCD website the other day like what is this?! 

About makeup- I am a chick and I have never been big on lipstick so don't fret too much unless you have a fetish for gals with lipstick ;) and sadly though i am married my husband isn't entirely understanding. Yes he is supportive and yes he checks labels, but i still have to double check. And he is frustrated by my situation which doesn't make me feel much better. 

You can only do what YOU as a person can take on right now. So take a deep breath- keep exercising (totally get that it keeps me sane!) I got a decent vegan (i am not vegetarian) meal supplement shake on amazon the other day and its pretty good! makes me feel less.... empty- hungry- unfulfilled. https://www.amazon.com/gp/product/B00FYD5MVA/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1

And again try to not google too much. Honestly this website has been the best info I have found out there because its REAL PEOPLE. Not some stupid sales pitch. I literally lost it on a comments section of a "celiac diagnosis is a blessing in disguise" blog post. haha! it felt SOO good. 

Anyways hang in there and YES to microwave rice it is delicious and way better than any i have tried to cook :)

 

OH I forgot to say about gluten free foods- I recently tried cutting most of them out aside from lke once a week because i felt a little off if i ate TOO much in a week. I am now slowly reintroducing a slice of bread here and some noodles there because my body craves it so much and i feel like i am starving all the time. And so far i'm ok. I think the main thing is to just not eat gluten free products as often as you would have eaten regular products. For example: cereal for breakfast, sandwich with 2 slices bread for lunch, crackers and cheese for snack, burrito with flour tortilla for dinner. etc.. does that make sense?

I seem to have zero issues with corn tortilla chips or corn tortillas- i only count like gluten free bread and crackers/noodles as those crappy super processed foods. 

 

Share this post


Link to post
Share on other sites
22 hours ago, lmj623 said:

OH I forgot to say about gluten free foods- I recently tried cutting most of them out aside from lke once a week because i felt a little off if i ate TOO much in a week. I am now slowly reintroducing a slice of bread here and some noodles there because my body craves it so much and i feel like i am starving all the time. And so far i'm ok. I think the main thing is to just not eat gluten free products as often as you would have eaten regular products. For example: cereal for breakfast, sandwich with 2 slices bread for lunch, crackers and cheese for snack, burrito with flour tortilla for dinner. etc.. does that make sense?

Yup that sounds a sensible way to approach it, seems to be the direction I'm going in by looks of things :)

Private appointment with a gastro specialist now booked for next Monday so will see how that goes, money talks I guess :rolleyes:

Share this post


Link to post
Share on other sites
6 hours ago, egs1707 said:

Yup that sounds a sensible way to approach it, seems to be the direction I'm going in by looks of things :)

Private appointment with a gastro specialist now booked for next Monday so will see how that goes, money talks I guess :rolleyes:

Good luck! I just went to my regular doctor who now suggests I stop eating dairy and I about died. But whatever. After crying about it a lot and realizing after eating it that it may be the culprit for me spending a lot of time in the bathroom.. I move onward. At least we all have each other. 

 

Bur ur dear god can someone suggest a gluten free dairy free ranch salad dressing option?!?! I love ranch ?

Share this post


Link to post
Share on other sites
4 hours ago, lmj623 said:

Good luck! I just went to my regular doctor who now suggests I stop eating dairy and I about died. But whatever. After crying about it a lot and realizing after eating it that it may be the culprit for me spending a lot of time in the bathroom.. I move onward. At least we all have each other. 

 

Bur ur dear god can someone suggest a gluten free dairy free ranch salad dressing option?!?! I love ranch ?

Hi lmj623

Maybe try Brianna's line of dressings?  I am not sure if the ranch dressing is dairy free.  But the poppy seed and honey mustard are both dairy free.  They make 12 gluten free dressings of the 15 total they do (Oct-2016).

http://www.briannas.com/gluten-free/

Share this post


Link to post
Share on other sites

It is suggested to cut out dairy because lactose is hard to digest. With most lactose intolerance, you may find you don't have to avoid all dairy.  You may be able to tolerate a small amount or some dairy items that have little to no lactose.  Check "lactose intolerance" on the internet.  

 

For the salad dressings - maybe google "lactose free ranch dressing"? Or " vegan ranch dressing"

Edited by kareng

Share this post


Link to post
Share on other sites
On 10/14/2016 at 2:09 AM, GFinDC said:

Hi lmj623

Maybe try Brianna's line of dressings?  I am not sure if the ranch dressing is dairy free.  But the poppy seed and honey mustard are both dairy free.  They make 12 gluten free dressings of the 15 total they do (Oct-2016).

http://www.briannas.com/gluten-free/

Thanks! I actually looked into a few recipes online- with the addition of a fair amount of mayo i hope its just as good :) 

 

Share this post


Link to post
Share on other sites

So had the private appointment on Monday, make a refreshing change to talk to someone who seemed to actually know what they were talking about and have symptoms checked right back from the beginning.

As everyone on here correctly stated I have to go back on gluten for 4-6 weeks before being able to have the endoscopy, all seems a lot of effort to confirm something that's 90% certain anyway but such is the process it seems.

On one hand it's a free pass to enjoy being able to eat like a normal person for the last time but on the other hand already noticing the reaction symptoms today. Could be a rough ride I think and entirely avoidable had the initial GPs I saw had even the slightest clue about how to deal with celiac, very frustrating.

Still not dealing with the acceptance side of this at all tbh. Was out the other day at shops, so hungry yet had to walk past one place after another and ending up with a rather unsatisfying banana and protein bar stood outside, alone in the cold. Sums up how I feel about the future with this condition really :unsure:

Share this post


Link to post
Share on other sites

Hi Egs,

Yes, it sucks that so many doctors are ignorant of ceilac disease testing protocols.  We have seen many members post on the forum the same issues, that their doctor told them to try the gluten-free diet before doing the testing.  Pretty incompetent advice from them IMHO.  But it explains why upwards of 80% of celiacs are walking around undiagnosed or misdiagnosed also.  Medical not so-professionals at the helm.

It may take some time to adjust to gluten-free eating.  We learn to eat as children and spend our whole lives eating whatever we want.  Being suddenly told to change a lifetime habit can be challenging.  But feeling better is so worth it also.

 

Share this post


Link to post
Share on other sites

Back on the gluten foods for about a week now and it's hell, if there was any doubt that the blood test wasn't accurate I can say with unerring certainty now it's definitely gluten causing the problems. The headaches, muscle pains, sore throat (reflux no doubt) and general feeling of malaise all back with a vengeance. As predicted it's worse this time round having done gluten-free for a while and no doubt same will apply in the other direction in 3-4 weeks' time.

On the verge of giving up all hope now and this is before I find out how shredded my insides are followed by the further kick in the guts of discovering cross reactivity. What point is there carrying on if the future is this painful, lonely and miserable :(

Share this post


Link to post
Share on other sites
1 hour ago, egs1707 said:

Back on the gluten foods for about a week now and it's hell, if there was any doubt that the blood test wasn't accurate I can say with unerring certainty now it's definitely gluten causing the problems. The headaches, muscle pains, sore throat (reflux no doubt) and general feeling of malaise all back with a vengeance. As predicted it's worse this time round having done gluten-free for a while and no doubt same will apply in the other direction in 3-4 weeks' time.

On the verge of giving up all hope now and this is before I find out how shredded my insides are followed by the further kick in the guts of discovering cross reactivity. What point is there carrying on if the future is this painful, lonely and miserable :(

It took me years to be diagnosed.  I've been misdiagnosed with several different things and knew that there was more to it.  I requested to have an egd to test for Celiac's two years ago, my doctor never called me back so I went low gluten from then on.  I still felt like hell because I didn't realize that "everything" has gluten in it....  My daughter became ill back in March.  I went to several different doctors trying to figure out what was causing her to be ill.  Our family doctor said she had gallstones, wanted to immediately do surgery on her.  I refused since she didn't fit the typical signs of a child with gallstones.  I requested a pediatric surgeon and then a pediatric gi dr.  The surgeon was smart enough to say maybe ask the gi dr to test for celiac disease....  Then it clicked.  I was so angry and mad at myself and my dr for not listening to my body for the past several years.

Her blood test was negative, but the biopsy was positive.  She went on the gluten free diet.  I then said I wanted to be formally tested.  Blood test was negative, biopsy was positive and they ran the genetic screening.  I am a DQ2 homozygous, cat 8.  My doctor apologized to me over and over.   I have two sons that were tested for their genes, one is a cat 4 and one is a cat 2.  If they start showing signs of the disease they will be tested by way of egd.  Their pediatric gi said that I probably would've died by 40 if I was left undiagnosed.  

So in saying all of that, fight for your test.  Listen to your body, but don't stop living.  Use this as a teaching tool.  Help others that don't understand the disease.  It'll be tough but you can do it...

Share this post


Link to post
Share on other sites
11 minutes ago, BergieF said:

So in saying all of that, fight for your test.  Listen to your body, but don't stop living.  Use this as a teaching tool.  Help others that don't understand the disease.  It'll be tough but you can do it...

Going private no problem with getting the tests now, adds financial pain to the physical pain but better than 6 month waiting list on the national health service. Just feels like a lot of pain and aggravation to tell me what I already know deep down.

Feels like my whole future has been taken away with this and I have a feeling I haven't even seen the half of it yet. Doctor seems to be very relaxed on the concept of needing to worry about cross reactivity, gluten paranoia when eating out etc. yet it seems to be the case for most on there that that's exactly how it is for so many people.

Someone tell me I'm wrong... or is that really what life becomes in the cold harsh reality of things?

Share this post


Link to post
Share on other sites
30 minutes ago, egs1707 said:

Going private no problem with getting the tests now, adds financial pain to the physical pain but better than 6 month waiting list on the national health service. Just feels like a lot of pain and aggravation to tell me what I already know deep down.

Feels like my whole future has been taken away with this and I have a feeling I haven't even seen the half of it yet. Doctor seems to be very relaxed on the concept of needing to worry about cross reactivity, gluten paranoia when eating out etc. yet it seems to be the case for most on there that that's exactly how it is for so many people.

Someone tell me I'm wrong... or is that really what life becomes in the cold harsh reality of things?

Your future has not been taken away.  You just have to be very careful eating out.  I have a handful of restaurants that I trust to cook my food correctly.  I ask a billion questions too (speak with a manager, ask if food is prepared in it's own dedicated facility and if they have dedicated fryers, ask about the workers and the sanitation practices)  If you don't feel comfortable eating after getting answers, then don't eat.  I've been in several social situations with family, friends and work where I've had to settle for a glass of wine.  I will explain why I can't partake if asked.  Honestly the only time I eat out is when I know that it's safe, I'll take my food on trips away from home, or I'll eat before going out with friends/family.

As far as the kissing thing you mentioned.  My husband is understanding.  He'll make sure that his mouth is clean, brushed teeth and if he has a doubt he'll kiss my cheek.  It's really not the end of the world, it might feel like it, but it'll get better...  My daughter is 13.  She hasn't had her first kiss, she knows that she'll have to tell whoever it is about her disease.  If it's someone worth having, they will stick around.  Think about it as a way to weed out the bad ones ;) ...   

Share this post


Link to post
Share on other sites

It's not fun at first EG1707, but after a variable amount of time you get used to it.  I used to be pretty paranoid about gluten cross contamination, and I am still careful of it, but it isn't a big worrisome thing.  I take precautions and do fine most of the time.  Not being the exact same as everybody else isn't all bad.  Most of your friends can probably shovel all kinds of junk in their gullets and never even think twice about it.  They may have free reign to eat as they please, but they will also have the possibility of eating many more chemical preservatives, flavorings, colorings, and emulsifiers.  Maybe those things aren't automatically bad for them, but they aren't a normal part of a food either.  They are added purely to enhance sales revenue.  Sticking with a mostly whole foods diet you will be able to avoid most of that stuff.  Your liver may thank you for that.  Fewer chemical additives to process isn't such a bad thing.

Recovery is not an smooth road sometimes.  The immune reaction is fired up and ready to rumble when we first go gluten-free.  Our guts are also damaged and easily bothered by any kind of minor irritation, that may not cause a problem later on.  Our gut bacterial flora is probably a swamp of unhealthy bacteria that needs to be rehabilitated into a healthy mixture.  None of these things are going to happen over night.  But they can all improve and lead to better health.  And most likely will as time goes by.  But we have to stick it out to give our system time to recover.

Additional food intolerances may crop up but they are not insurmountable either.  I struggled with my health for years after going gluten-free, but am so much better now.  I even have some energy now to do things and that is a great thing.  We may not be dealt an easy card, but there are others with much worse situations.  Our disease/condition is one where the treatment is known, the answer is just a diet change, and we don't need strong drugs to combat it.  We have to take care of ourselves, rather than doctors taking care of us.  But that's a good thing.

The less gluten, the more whole foods the less processed foods, the better for a beginner IMHO.  There's always time to branch out to more adventerous foods after healing a while.

Share this post


Link to post
Share on other sites
9 hours ago, BergieF said:

Your future has not been taken away.  You just have to be very careful eating out.  I have a handful of restaurants that I trust to cook my food correctly.  I ask a billion questions too (speak with a manager, ask if food is prepared in it's own dedicated facility and if they have dedicated fryers, ask about the workers and the sanitation practices)  If you don't feel comfortable eating after getting answers, then don't eat.  I've been in several social situations with family, friends and work where I've had to settle for a glass of wine.  I will explain why I can't partake if asked.  Honestly the only time I eat out is when I know that it's safe, I'll take my food on trips away from home, or I'll eat before going out with friends/family.

As far as the kissing thing you mentioned.  My husband is understanding.  He'll make sure that his mouth is clean, brushed teeth and if he has a doubt he'll kiss my cheek.  It's really not the end of the world, it might feel like it, but it'll get better...  My daughter is 13.  She hasn't had her first kiss, she knows that she'll have to tell whoever it is about her disease.  If it's someone worth having, they will stick around.  Think about it as a way to weed out the bad ones ;) ...   

Already had that looking on experience and in the end had to leave the room as it was unbearable just sitting there with people laughing at me not being able to eat, yup people are cruel and really show their colours at times like this.

Tbh based on the reactions I've had from people my age so far the kissing thing will be irrelevant as no one will stick around to get that far. Since the diagnosis whenever the gluten stuff has come up I've been belittled and made the butt of jokes. Then even people who previously were OK with it started jumping on the bandwagon too. Seems like the alternative to the "bad ones" is no one, which is even worse :(

@GFinDC it's the time thing that's really getting me down right now. Feel like I've lost out so much already and the thought of losing another year or two to this is driving me crazy, especially when I see others my age making the most of their lives and I know with this I can't do the same. 

I'm exactly one of those people you described, never been interested in cooking and vegetarian too which rules out this paleo diet everyone seems to use as gut healing. Just adds to the feeling of being lost in all this and once I close the forum window I'm on my own.

Still wondering if to do those Cyrex tests to find out early on which other foods may be problematic. Part of me isn't convinced they're scientifically proven enough to be useful but then others seem to have had useful result. Trouble is it's not cheap and already been drained money-wise by these private hospital visits so have to pick the treatments wisely...

Share this post


Link to post
Share on other sites
7 hours ago, egs1707 said:

Already had that looking on experience and in the end had to leave the room as it was unbearable just sitting there with people laughing at me not being able to eat, yup people are cruel and really show their colours at times like this.

Tbh based on the reactions I've had from people my age so far the kissing thing will be irrelevant as no one will stick around to get that far. Since the diagnosis whenever the gluten stuff has come up I've been belittled and made the butt of jokes. Then even people who previously were OK with it started jumping on the bandwagon too. Seems like the alternative to the "bad ones" is no one, which is even worse :(

@GFinDC it's the time thing that's really getting me down right now. Feel like I've lost out so much already and the thought of losing another year or two to this is driving me crazy, especially when I see others my age making the most of their lives and I know with this I can't do the same. 

I'm exactly one of those people you described, never been interested in cooking and vegetarian too which rules out this paleo diet everyone seems to use as gut healing. Just adds to the feeling of being lost in all this and once I close the forum window I'm on my own.

Still wondering if to do those Cyrex tests to find out early on which other foods may be problematic. Part of me isn't convinced they're scientifically proven enough to be useful but then others seem to have had useful result. Trouble is it's not cheap and already been drained money-wise by these private hospital visits so have to pick the treatments wisely...

First of all- who are these a-holes making fun of you? It's making me heated just thinking about it. Coworkers? If you don't like your job much I suggest taking a diarrhea sh*t in a bag and leaving it on their desk. Then see how hard they laugh. (sorry I have quite an interesting sense of humor/need to make people realize how not funny their jokes are).

I haven't had a whole lot of people who poke fun at me, I get the annoying "oh! That must be why you are so skinny- you are SO lucky!" Even one of my very close friends says that to me sometimes- that she wishes she wouldn't absorb all the nutrients in her food so she could lose wait. I'm sorry WTF did you just say to me?! Seriously? IF you are that desperate to lose weight maybe TRY to do something about it instead of complain to me and wish you had some effed disease. Phew- tangent.

Um. This might be against what others think or recommend. But I want to share so maybe you feel less overwhelmed. I didn't worry about other cross reactive foods or even think about it until later on. And with some worries about this and that (coffee mostly) I stopped thinking about it and stopped googling it. There are enough things for me to worry about just avoiding gluten. And I still drink coffee. Dairy has only recently become a (noticeable) issue after 3 years gluten free.

The kissing thing- I don't worry about either. Maybe because I have been with the same guy for 11 years but we don't do a whole lot of hard make out sessions right after dinner. LOL. I don't know how sensitive you are- I don't know if you even know how sensitive you are. It takes a long time to really figure this whole thing out. And then once you get it figured out- something changes (just like parenting small children!) I think with the other foods issue, because you are feeling so depressed- I would just worry about the gluten part for now (after you get through this nightmare of eating it again).

Do you have to have the diagnosis? Is it really worth it in the end? I know having the official diagnosis can make it easier to see necessary specialists and get tests done- when you stay in the hospital they try to feed you the right food. But. I don't know. Hard for me to say because my dr went about things a little differently and gave me a diagnosis just based on my symptoms being better without gluten and having a genetic test that was positive. After reading what you are going through I would bail in a heartbeat- eating that gluten for that long and still working and all that is a lot. And it will make the depression you are already going through seemingly worse. I am in no position to suggest what you should do in this instance but just a thought I wanted to share.

Anywho- hang in there. Hire a hit man perhaps to take out these evil people. or leave flaming poop bags on their porch (so you can keep your job ;) )

Share this post


Link to post
Share on other sites
On 25/10/2016 at 4:39 PM, lmj623 said:

First of all- who are these a-holes making fun of you? It's making me heated just thinking about it...

Kept the quote short for ease of reading but yeah I've cut a few people loose in the past few weeks after seeing their reactions. Fortunately balanced out by the positive, helpful comments on here though.

Main reason for putting myself through this gluten challenge business isn't so much to get the diagnosis but more to find out just how bad the damage is (expecting the villi to be flat as pancakes so anything less will be a bonus). Over here in UK I can apparently get certain gluten-free foods on prescription with the official diagnosis too so that's the other reason I've been given for doing it.

I'm hoping that having done the first week back and took the initial hit that the glutening symptoms may not be as bad for the next 3 weeks. Not quite sure how I've got through it at times but at least I know what the problems are caused by now whereas 6 months ago it was a complete mystery.

Managed to summon up all my energy reserves for some sport last night, suffering for it today but forgetting about everything for a while makes it worth the pain!

Share this post


Link to post
Share on other sites

 

On 9/25/2016 at 3:45 PM, egs1707 said:

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.

 

On 9/29/2016 at 10:08 AM, Nikki2777 said:

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 ;-)

Hi,

I would have to try and find a recipe but you can get a mini muffin pan and make mini quiches, say on a Sunday, freeze them and they last maybe 3-4 days. You just heat them in a toaster oven, oven or just let them thaw & they give you a boost of fat and protein in the morning. You can add any veg, cheese or whatever you want. It takes maybe 10 minutes or so to cook. Then you can use them for the next several days.  If I find some recipes I'll add them. Can you eat chia seeds? You can soak those overnight in almond milk & add fruit and it makes a kind of pudding in the morning. When you make it you can pour it into 4 glass cups that have lids and eat them the next 4 mornings. Or I guess you could take them to work also. I'll post recipes if I find them. There are things you can cook in under 1/2 hour & basically make your own convenience food.

This is the kind of muffin pan/tin I mean:   http://www.johnlewis.com/le-creuset-12-cup-mini-muffin-tray

http://www.containerstore.com/s/covered-glass-bowl/

http://www.williams-sonoma.com/products/working-glasses-with-lids

Share this post


Link to post
Share on other sites

Overnight Chia Seed Pudding 

(Omit or change anything to suit you. I probably personally wouldn't add a sweetener at all except for fruit, maybe berries. You can just do the chia seeds and milk of some kind and add fruit in the morning~ especially if you want something really mild to start with. By the way I'm new to this so not sure if chia seeds are upsetting to the stomach. It was just an idea for something that you could make ahead. What about getting a blender and making smoothies?)

Ingredients:

3/4 cups chia seeds

4 cups homemade almond milk (or store bought)

1/4 cup maple syrup

1 tsp vanilla extract

1 tsp cinnamon

Directions

Divide between 4 glasses with lids

Chill overnight

Serve with banana topping

Can last up to 4 days

Share this post


Link to post
Share on other sites

So nearly at the end point of the gluten challenge, body has somewhat adjusted to the gluten intake and settled back to the original symptoms of head tightness, muscle soreness, dizziness and general GI malaise. Almost used to that given how it's how I've been feeling most of the year so definitely seems 3-4 weeks is my adjustment timeframe.

Endoscopy is this week, which I'm terrified of having read the "complications" section of the advice leaflet.

I'd say I've fully loaded up on gluten in these last few weeks, ticked off most stuff on my "one last time" list but know I've probably forgetton something I'll be gutted about after. 

All change again in a few days' time...

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...