Dealing with celiac disease

[Alan12345]

Hi everyone, new member here. This year was the hardest year of my life so far. I am currently a medical student at university and thankfully finished another year through sheer luck. This whole year consisted of overwhelming fatigue and insomnia everyday for the past 8 months, aswell as crazy brain fog. Literally couldn't be worse... then after i gave up gluten, i felt abit better (after knowing i have FOUR first degree relatives with celiac). After giving up gluten however, i still felt tired, then i started giving up grains and dairy and eggs. I then felt alot better. im still working out what i can and cant eat but life does get better. However, after going on a paleo diet, im really struggling to see how i can sustain this for the rest of my life, honestly im really scared. My family think i am crazy for not eating rice oats etc. especially as rice is such a staple in my cultures food (middle eastern background). Noone really understand the severity of these symptoms and honestly im just looking for some anecdotes and help of people who are in a similar situation to me. one last thing is, in terms of my dating life, i dont even know how to approach that anymore. Having to ask a girl to wash her mouth out before i can kiss her? I really dont know what to do anymore at all.... would appreciate any help or kind words. Thank you. 

[Scott Adams]

Hi Alan, welcome to the forum! I think that your health is your first concern, and to me it sounds like you are doing a very good job taking care of yourself, which will probably help you a great deal with managing your school life. You've got lots of time to date and meet others, so I would not worry too much about this aspect of life.

Believe it or not there are tons of stories on our forum that were shared by people who found very supportive partners, and many non-celiacs can be very understanding and accommodating, and some even go gluten-free in solidarity with their gluten-free partner. 

There are a few approaches you could take, but perhaps wait until you're fully healthy again, for example:
1) Not mention it at all. Just meet someone, spend time with them, and if things seem like they might get more serious you could eventually let them know you're gluten-free (it's pretty common now, so it hopefully would not be a big deal for them).
2) Try to meet others who are also gluten-free. There is a large support group in the UK, Facebook groups, forums, etc, so perhaps you could try to meet someone who's also gluten-free.

I'm pretty sure that this won't be as big of a deal as you think it is right now.

[Alan12345]

21 minutes ago, Scott Adams said:

Hi Alan, welcome to the forum! I think that your health is your first concern, and to me it sounds like you are doing a very good job taking care of yourself, which will probably help you a great deal with managing your school life. You've got lots of time to date and meet others, so I would not worry too much about this aspect of life.

Believe it or not there are tons of stories on our forum that were shared by people who found very supportive partners, and many non-celiacs can be very understanding and accommodating, and some even go gluten-free in solidarity with their gluten-free partner. 

There are a few approaches you could take, but perhaps wait until you're fully healthy again, for example:
1) Not mention it at all. Just meet someone, spend time with them, and if things seem like they might get more serious you could eventually let them know you're gluten-free (it's pretty common now, so it hopefully would not be a big deal for them).
2) Try to meet others who are also gluten-free. There is a large support group in the UK, Facebook groups, forums, etc, so perhaps you could try to meet someone who's also gluten-free.

I'm pretty sure that this won't be as big of a deal as you think it is right now.

Thanks a lot for the reply. Yeah thankfully I was able to realise what was going on with my health as soon as possible and rectified it. One other thing I forgot to highlight which I don’t really know how people deal with is eating out? I find it so so hard to deal with that aspect especially. Would love to hear if truly coming to terms with such a restricted diet is ever truly possible. Thanks again for your reply and your kind words. Appreciate it. 

[cristiana]

Wise words from Scott there.   

I'd also say do join Coeliac UK, if you are writing from the UK, if you haven't already.  I'm pretty sure they support people with Non Celiac Gluten Intolerance, too.  My local group actually organises meals out at safe venues.   I have actually never gone myself yet but that's due to poor organisation on my part, more than anything else.   

Also, re: your restrictive diet, you may find that you can better tolerate certain foods that you have had to give up in the longer term (of course, apart from the dreaded gluten!) This has happened with me.   I felt really unwell when I ate dairy and lentils, for example, and now so long as I don't overdo it I cope really well with both.

You will also find ways of adjusting and coping over time.  I've learned so much by reading topics on this forum, I don't know where I'd have been without it in the early days.  Try to take one day at a time. There will be low days when it will all feel very limiting, but as my husband says to me when I do feel bad about it, it's good to try to think about all I can still eat.

Are your four relatives that you mention supportive?

Cristiana

 

Edited July 21, 2021 by cristiana

[Scott Adams]

I take AN-PEP enzymes (GliadinX...they are a site sponsor here) before any meal outside my home, as they've been shown in several studies to break down small amounts of gluten in the stomach, like you might get in a cross-contamination situation eating out. 

Nowadays there are apps to help you find restaurants with gluten-free menus, and I would try this and be sure to read reviews before going. I usually have a brief conversation before I order and mention that I'm gluten-free, and you can often tell just from the reaction of the waiter weather or not eating there is a good idea (some know exactly what you mean, and ask you more questions about how sensitive you are, while others don't get it at all, which should be taken as a warning).

 

[Alan12345]

1 hour ago, cristiana said:

Wise words from Scott there.   

I'd also say do join Coeliac UK, if you are writing from the UK, if you haven't already.  I'm pretty sure they support people with Non Celiac Gluten Intolerance, too.  My local group actually organises meals out at safe venues.   I have actually never gone myself yet but that's due to poor organisation on my part, more than anything else.   

Also, re: your restrictive diet, you may find that you can better tolerate certain foods that you have had to give up in the longer term (of course, apart from the dreaded gluten!) This has happened with me.   I felt really unwell when I ate dairy and lentils, for example, and now so long as I don't overdo it I cope really well with both.

You will also find ways of adjusting and coping over time.  I've learned so much by reading topics on this forum, I don't know where I'd have been without it in the early days.  Try to take one day at a time. There will be low days when it will all feel very limiting, but as my husband says to me when I do feel bad about it, it's good to try to think about all I can still eat.

Are your four relatives that you mention supportive?

Cristiana

 

Thanks for the reply Cristiana. I’ll look into coeliac UK. Also yeah I’ve heard a lot from others that intolerances do tend to go away after the gut heals so praying that happens sooner rather than later. Hope rice is one of the intolerances that goes away lol. My 4 relatives aren’t supportive really but that’s due to the fact their symptoms are all GI, and also they don’t have other non gluten grain intolerances. I’ve just been quite unlucky in my sensitivities. The GI stuff I can deal with, it’s the fatigue and brain fog which can sometimes be insufferable.  Your right however, these forums are gems, it’s somewhat comforting to know there are people out there who have dealt with similar problems and made it to the other side. 
 

[Alan12345]

1 hour ago, Scott Adams said:

I take AN-PEP enzymes (GliadinX...they are a site sponsor here) before any meal outside my home, as they've been shown in several studies to break down small amounts of gluten in the stomach, like you might get in a cross-contamination situation eating out. 

Nowadays there are apps to help you find restaurants with gluten-free menus, and I would try this and be sure to read reviews before going. I usually have a brief conversation before I order and mention that I'm gluten-free, and you can often tell just from the reaction of the waiter weather or not eating there is a good idea (some know exactly what you mean, and ask you more questions about how sensitive you are, while others don't get it at all, which should be taken as a warning).

 

Your completely correct in the second part especially. Normally staff who look abit dumbfounded when you tell them about your gluten intolerance usually are a tell tale sign your probably going to be glutened. It’s just annoying as their mistake can set you back a lot in the journey to recovery. Hopefully the “glutened” accidents get easier to recover from overtime. 

[JiminyCricket]

4 hours ago, Alan12345 said:

Hi everyone, new member here. This year was the hardest year of my life so far. I am currently a medical student at university and thankfully finished another year through sheer luck. This whole year consisted of overwhelming fatigue and insomnia everyday for the past 8 months, aswell as crazy brain fog. Literally couldn't be worse... then after i gave up gluten, i felt abit better (after knowing i have FOUR first degree relatives with celiac). After giving up gluten however, i still felt tired, then i started giving up grains and dairy and eggs. I then felt alot better. im still working out what i can and cant eat but life does get better. However, after going on a paleo diet, im really struggling to see how i can sustain this for the rest of my life, honestly im really scared. My family think i am crazy for not eating rice oats etc. especially as rice is such a staple in my cultures food (middle eastern background). Noone really understand the severity of these symptoms and honestly im just looking for some anecdotes and help of people who are in a similar situation to me. one last thing is, in terms of my dating life, i dont even know how to approach that anymore. Having to ask a girl to wash her mouth out before i can kiss her? I really dont know what to do anymore at all.... would appreciate any help or kind words. Thank you. 

Hi Alan,

I completely understand how scary it is to not know what your body can and can’t handle, but it sounds like you’re being proactive trying to work out what’s wrong by yourself! I only just finished university last year and similarly was tired all the time to the point that my housemates joked about how many naps I took most days, struggled to stay focused in lectures and had pretty nasty stomach cramps about 80% of the time, so much so that I went through with a diagnostic laparoscopy to try to find the cause of my pain as I was originally told I was unlikely to have coeliac disease. 
 

I was only recently diagnosed in January this year, and started the paleo diet in early June as my symptoms weren’t going away on a gluten free diet. It has been very frustrating and tiring having to keep track of every symptom and every bit of food I eat, particularly as I have a history of disordered eating so I haven’t been enjoying those thoughts creeping back in, but my driving force at this point is trying to get rid of my constant tiredness and stomach troubles. I’m now on a dairy and gluten free diet whilst also trying to stay away from gluten-free substitutes and highly processed foods, which seems to have settled most of my stomach pain. In terms of feeling like the paleo diet is unsustainable, I totally agree in the long-term (it was so hard for the first few weeks eating just plain meat and veggies!), but my aim was just to ‘clean out’ my system for a few weeks before slowly reintroducing foods and testing whether they brought back any symptoms, so it might be an idea for you to try sticking with it until you haven’t had symptoms for a few days, and then picking something fairly neutral (mine was eggs first) and seeing if your symptoms come back. That way, you should hopefully be able to build a diet up from the paleo diet without getting any symptoms returning so that you eventually have a more interesting and varied diet.  
 

I think my only advice currently (although I am also fairly new to this!) is to just keep persevering and trying out what you feel helps your symptoms and what doesn’t. I’m sorry to hear that your family don’t fully understand, but I guess I would say that you know your body and how you feel, so if you think something is wrong then it doesn’t matter whether other people understand or not as it’s up to you whether you want to try to find the cause. I spent 6 years going back and forth to different GPs and hospitals getting various tests for things, so it was really demoralising being told it was probably stress, a bad diet and psychological, but I’m really glad I pushed to get tested for coeliac disease as it let me know it wasn’t just all in my head! Also, I think a diagnosis helped some of my friends and family members accept that I wasn’t just messing around with my diet and complaining about being tired constantly for attention, so it was also quite helpful in that respect. I also have found forums like this very useful - the dieticians I’ve spoken to have been slightly less helpful than I hoped (basically just reading off the Coeliac UK website rather than giving me any new advice) so I found that forums and genuine health websites had some tips from other diagnosed people about how to approach the diet and what to try if you still have symptoms. 
 

In terms of the whole kissing thing, I did actually ask my GP this as I’d read that you shouldn’t kiss someone who eats gluten! They said that it was generally not true - they recommended not to kiss someone currently eating or who just ate gluten within the last 20-30 minutes, but otherwise they don’t have to wash their mouth out or anything so no need for that awkward conversation! In terms of telling people you’re gluten-free, I think it’s actually a fairly common conversation to have - I recently told some new work colleagues, expecting it to be quite awkward, but it turns out a bunch of them were also gluten free so we could share some tips with each other. 
 

Finally on eating out, I do find it quite difficult to find places I trust as most restaurants seem to tell me that they do cook everything separately, but obviously I can’t check that they actually do, and I’m not sure if I ever will be able to trust most places (particularly as I’m quite an anxious person!). If I do eat out, I tend to go somewhere which offers gluten and dairy free options, always look at the menu beforehand and call to check they know I need gluten free options to actually be gluten free before I go anywhere. It is definitely trickier going out spontaneously nowadays, as I have to know there’s a restaurant chain that I trust to not have to bring food with me (like Honest Burger or Zizzi are my two favourite places which don’t give me symptoms), but if you let everyone you go out with know that you need to go somewhere with gluten-free options, hopefully they’ll be understanding and can go somewhere you can eat.

Sorry for quite the ramble there, but I hope that helps a little. I know how daunting it can be and maybe how upset you’re feeling about having to cut out a bunch of foods - when I got diagnosed, I kind of hated how many people who weren’t on a gluten free diet told me ‘there are so many gluten free options now, so your diet won’t even change that much’. I won’t lie - I was very upset for several months at having to give up loads of my favourite foods, and still get upset and anxious about having to eat differently when I’m outside my house. Accepting that it’s what your body needs is tricky, but in the long-term my thoughts are that I want to live a long, relatively healthy life and to do that I have to take care of my body, so that’s what I’m trying to keep telling myself to stay motivated even on the hard days. 
 

Good luck with everything, I hope you manage to find a diet that works for you!

[BuddhaBar]

Celiac disease can change your digestive system forever. Even if you're healed and all that, your abdomen will never be the same. A lot of celiacs develop other sensitivities. Sometimes it's not enough to just quit the gluten. 
Your sensitivity to dairy might be secondary and will go away after you're healed. "True" lactose intolerance is genetic.

Before Celiac I had a stomach of steel. After Celiac I developed a sensitivity to fibers. Too little and I s$#& rocks, too much and I get bloating and diarrhea. Can't handle too much coffee anymore and I suffer from trapped wind causing daily pain in the right side of my abdomen and back. I went from being able to eat anything without the slightest discomfort to being aware of that my abdomen is there every day. And this is my life as healed. 

Don't worry about the dating. A lot of people are understanding once you explain things for them. My husband is a gluten eater, but he only eats gluten dinners when I'm on the evening shift and he always brush his teeth after eating a sandwich, drinking beer etc and keeps his gluten stuff away from my food. It's not a problem. If the girl loves you, she wants you to stay healthy. And of course, there are celiac girls out there too. 

[Scott Adams]

One other thing that helps with the brain fog, at least for me and others here, is turmeric. Even though I'm gluten-free I take organic turmeric each day with breakfast. It reduces inflammation, and I believe has helped improve my memory. As with everything, just be sure the turmeric you get is gluten-free, as I've heard that it can also be contaminated.

[cristiana]

That's a great tip about the tumeric. I had no idea.   I ate some crisps with it today - not the healthiest way to consume it, though, methinks!    

Alan, have you had your B12 and ferritin levels checked?  Low levels (or even low normal levels)  give me brain fog.  

When this happens I buy some excellent  B12 sublingual supplements from Holland & Barratt - Solgar.   They make such a difference.   These days iron is a bit tricky for me as I have high haemoglobin these but when I used to be anaemic supplementing iron made a massive difference.

[Alan12345]

On 7/22/2021 at 2:04 AM, JiminyCricket said:

Hi Alan,

I completely understand how scary it is to not know what your body can and can’t handle, but it sounds like you’re being proactive trying to work out what’s wrong by yourself! I only just finished university last year and similarly was tired all the time to the point that my housemates joked about how many naps I took most days, struggled to stay focused in lectures and had pretty nasty stomach cramps about 80% of the time, so much so that I went through with a diagnostic laparoscopy to try to find the cause of my pain as I was originally told I was unlikely to have coeliac disease. 
 

I was only recently diagnosed in January this year, and started the paleo diet in early June as my symptoms weren’t going away on a gluten free diet. It has been very frustrating and tiring having to keep track of every symptom and every bit of food I eat, particularly as I have a history of disordered eating so I haven’t been enjoying those thoughts creeping back in, but my driving force at this point is trying to get rid of my constant tiredness and stomach troubles. I’m now on a dairy and gluten free diet whilst also trying to stay away from gluten-free substitutes and highly processed foods, which seems to have settled most of my stomach pain. In terms of feeling like the paleo diet is unsustainable, I totally agree in the long-term (it was so hard for the first few weeks eating just plain meat and veggies!), but my aim was just to ‘clean out’ my system for a few weeks before slowly reintroducing foods and testing whether they brought back any symptoms, so it might be an idea for you to try sticking with it until you haven’t had symptoms for a few days, and then picking something fairly neutral (mine was eggs first) and seeing if your symptoms come back. That way, you should hopefully be able to build a diet up from the paleo diet without getting any symptoms returning so that you eventually have a more interesting and varied diet.  
 

I think my only advice currently (although I am also fairly new to this!) is to just keep persevering and trying out what you feel helps your symptoms and what doesn’t. I’m sorry to hear that your family don’t fully understand, but I guess I would say that you know your body and how you feel, so if you think something is wrong then it doesn’t matter whether other people understand or not as it’s up to you whether you want to try to find the cause. I spent 6 years going back and forth to different GPs and hospitals getting various tests for things, so it was really demoralising being told it was probably stress, a bad diet and psychological, but I’m really glad I pushed to get tested for coeliac disease as it let me know it wasn’t just all in my head! Also, I think a diagnosis helped some of my friends and family members accept that I wasn’t just messing around with my diet and complaining about being tired constantly for attention, so it was also quite helpful in that respect. I also have found forums like this very useful - the dieticians I’ve spoken to have been slightly less helpful than I hoped (basically just reading off the Coeliac UK website rather than giving me any new advice) so I found that forums and genuine health websites had some tips from other diagnosed people about how to approach the diet and what to try if you still have symptoms. 
 

In terms of the whole kissing thing, I did actually ask my GP this as I’d read that you shouldn’t kiss someone who eats gluten! They said that it was generally not true - they recommended not to kiss someone currently eating or who just ate gluten within the last 20-30 minutes, but otherwise they don’t have to wash their mouth out or anything so no need for that awkward conversation! In terms of telling people you’re gluten-free, I think it’s actually a fairly common conversation to have - I recently told some new work colleagues, expecting it to be quite awkward, but it turns out a bunch of them were also gluten free so we could share some tips with each other. 
 

Finally on eating out, I do find it quite difficult to find places I trust as most restaurants seem to tell me that they do cook everything separately, but obviously I can’t check that they actually do, and I’m not sure if I ever will be able to trust most places (particularly as I’m quite an anxious person!). If I do eat out, I tend to go somewhere which offers gluten and dairy free options, always look at the menu beforehand and call to check they know I need gluten free options to actually be gluten free before I go anywhere. It is definitely trickier going out spontaneously nowadays, as I have to know there’s a restaurant chain that I trust to not have to bring food with me (like Honest Burger or Zizzi are my two favourite places which don’t give me symptoms), but if you let everyone you go out with know that you need to go somewhere with gluten-free options, hopefully they’ll be understanding and can go somewhere you can eat.

Sorry for quite the ramble there, but I hope that helps a little. I know how daunting it can be and maybe how upset you’re feeling about having to cut out a bunch of foods - when I got diagnosed, I kind of hated how many people who weren’t on a gluten free diet told me ‘there are so many gluten free options now, so your diet won’t even change that much’. I won’t lie - I was very upset for several months at having to give up loads of my favourite foods, and still get upset and anxious about having to eat differently when I’m outside my house. Accepting that it’s what your body needs is tricky, but in the long-term my thoughts are that I want to live a long, relatively healthy life and to do that I have to take care of my body, so that’s what I’m trying to keep telling myself to stay motivated even on the hard days. 
 

Good luck with everything, I hope you manage to find a diet that works for you!

Thanks a lot for sharing your experience, don’t worry you weren’t rambling at all, it was really helpful to read and know other people my age and in similar situations to me are sharing the same struggle but have persevered and are getting through it. Again thank you, and good luck to you!

[Alan12345]

On 7/22/2021 at 7:16 AM, BuddhaBar said:

Celiac disease can change your digestive system forever. Even if you're healed and all that, your abdomen will never be the same. A lot of celiacs develop other sensitivities. Sometimes it's not enough to just quit the gluten. 
Your sensitivity to dairy might be secondary and will go away after you're healed. "True" lactose intolerance is genetic.

Before Celiac I had a stomach of steel. After Celiac I developed a sensitivity to fibers. Too little and I s$#& rocks, too much and I get bloating and diarrhea. Can't handle too much coffee anymore and I suffer from trapped wind causing daily pain in the right side of my abdomen and back. I went from being able to eat anything without the slightest discomfort to being aware of that my abdomen is there every day. And this is my life as healed. 

Don't worry about the dating. A lot of people are understanding once you explain things for them. My husband is a gluten eater, but he only eats gluten dinners when I'm on the evening shift and he always brush his teeth after eating a sandwich, drinking beer etc and keeps his gluten stuff away from my food. It's not a problem. If the girl loves you, she wants you to stay healthy. And of course, there are celiac girls out there too. 

Hopefully your correct abour the dairy, it’s so hard to cut out yogurt especially! Also thank you for reassuring me about my dating life haha I needed it. Appreciate the help.

On 7/22/2021 at 7:00 PM, cristiana said:

That's a great tip about the tumeric. I had no idea.   I ate some crisps with it today - not the healthiest way to consume it, though, methinks!    

Alan, have you had your B12 and ferritin levels checked?  Low levels (or even low normal levels)  give me brain fog.  

When this happens I buy some excellent  B12 sublingual supplements from Holland & Barratt - Solgar.   They make such a difference.   These days iron is a bit tricky for me as I have high haemoglobin these but when I used to be anaemic supplementing iron made a massive difference.

Yep. B12 actually came out higher than normal weirdly haha, I think it was due to taking supplements etc. I think I’m just getting too over sensitive to many foods as I’m quite an allergic/sensitive person anyway eg nuts, eczema, asthma etc. But I will definitely try out the tumeric trick ! Thank you 

[Kate333]

Hi Alan.  As a med student, you probably already know that brain fog, extreme fatigue are also classic symptoms of chronic, severe insomnia/anxiety/depression.  Not unusual complaints for beginning med students (or all of us during this crazy pandemic).  If you are still having those symptoms after being gluten-free for awhile, you might consider counseling, MH support group.  

  

[Alan12345]

10 minutes ago, Kate333 said:

Hi Alan.  As a med student, you probably already know that brain fog, extreme fatigue are also classic symptoms of chronic, severe insomnia/anxiety/depression.  Not unusual complaints for beginning med students (or all of us during this crazy pandemic).  If you are still having those symptoms after being gluten-free for awhile, you might consider counseling, MH support group.  

  

I appreciate all the concern but after going gluten free my mental health has actually been really good and I’ve been a lot more positive thinking. My sleep has all been okay too. The brain fog and fatigue especially settle in specifically after eating grains for some reason that’s why I was primarily worried (maybe gluten contamination?) not sure…

[Kate333]

Could be...give up grains for a few weeks and see if it makes a difference. 

I wish you speedy healing!

[Alan12345]

16 minutes ago, Kate333 said:

Could be...give up grains for a few weeks and see if it makes a difference. 

I wish you speedy healing!

Will do, it’s really a game of elimination and seeing what’s left I can eat lol. Thanks for the kind wishes. Hope your health is great and stays great too.

[Aint-this-a...]

Ok..where to begin,

I can live with the reality that I've had  migraines all my life I can live with the fact that every time I put a piece of produce in my my mouth my body immediately removes it for me regardless that it's supposed to sustain us . I can live with the fact that I've passed 6 kidney stones and had my gallbladder removed , mind you it was wasn't removed until deemed life threatening.  I can live with the fact that through out all our lives we have been silently and williningly poisoning our selves with each bite with each sip. I can live with the fact that if want to continue live then I must deny myself because everything is tainted. I cannot be angry with my current health deterioration because I accepted what was available without researching.  But my friends....come on , it is not the food rejecting us..but us rejecting the poisons. 

I'd like to do more than just feel sorry for myself because I can't eat whats supposed to be safe Instead chemicals have convinced my body to blindly turn on itself. 

I can't live with watching and doing nothing as my son my daughter our future children injest the poison apple.

Thank you for listening, At the end of the day I'm just another man thinking out loud looking for feedback and trying to understand how I'm going to eat gluten free. 

 

[trents]

It is hard to accept that wheat, universally considered to be the staff of life, can be harmful to us. Everyone who has been diagnosed with celiac disease or non celiac gluten sensitivity has struggled with that. Believe me, you have a lot of company in that regard. And when your health issues have already forced you to eliminate a lot of non gluten containing foods, it is that much harder to cope with. "Okay, let's add another one to the no no list. What am I going to live on?"

Not to sound morose here but in doing what we need to live, we also sew the seeds (pun intended) of our death. All of the good for you stuff we eat also poisons us a bit. All seeds and vegetables have natural defense chemicals that get ingested when we consume them. It's been that way since the fall of Adam.

[Scott Adams]

@Aint_this_a... welcome to the forum! Making the transition to a gluten-free lifestyle can be daunting at first, but after you gain more knowledge dealing with the diet will become easier. Hopefully seeing your health improve will provide you with the motivation. It's also important to get your direct relatives screened for it, as there is an ~44% chance that they may also have it.

This article may help:

 

[Dkorm]

Been positive for Celiac for 6 months or so, confirmed with biopsy and labs. Probably had it for some time. Doing fairly well with diet, always trying to refine it. No more craft beer, no real pizza, very tough. Dont do gluten free beers. Occasional glass or two of wine. Being more careful as time goes on. Especially when going out to eat, which isnt that often anymore. Careful where I go. One positive note, my eczema has improved by leaps and bounds. Dermatologist was going to put me on injections. Which cost around 40,000 per year. Covered by insurance, I turned it down, to much for even someone elses money. Very little hand swelling, no bleeding now. A small victory. No real improvement with my GI system. Figure it may take a while to heal. Im good until I have to have a bowel movement. Every couple days or so. Starts out fine then stops, pain, straining, cramping starts. Cant go, stools are soft, no diarrhea though. Then I go a while later, may repeat several times. When its over I may end up with rectal spasms, ever had those? very painful. Then I will be good for several days until this repeats itself. GI PA couldnt give me a real answer, told me to take a dulcolax PR, instant rectal spasms, was not good. Then said try a fleets enema whenever I go. Perhaps I can get a case load at costco fairly cheap. Quit all that, no answers there.  May have to put on a depends after all  this. Have a very clear fluid that pushes out, small amount, enough to show through my pants at times. TMI I know, Been difficult. Anyone else relate to this? Been seeing a nutritionist, trying to keep fiber to 25 to 30 per day. Been very very frustrating. And if we are going anywhere, like to the beach for the day I try not to go to the bathroom, will ruin the day. Any answers or thoughts? 

On 7/24/2021 at 4:52 PM, Kate333 said:

Could be...give up grains for a few weeks and see if it makes a difference. 

I wish you speedy healing!

I do very little on the grains, try to avoid completely. Dont do farm raised salmon either, grain fed. 

[Scott Adams]

Hello @Dkorm, sorry to hear that you're not doing well on the gluten-free diet, and this is true for many celiacs. I recommend that you go through this article and consider some of the things presented in it:

 

[GodsGal]

On 7/21/2021 at 3:46 PM, Alan12345 said:

Hi everyone, new member here. This year was the hardest year of my life so far. I am currently a medical student at university and thankfully finished another year through sheer luck. This whole year consisted of overwhelming fatigue and insomnia everyday for the past 8 months, aswell as crazy brain fog. Literally couldn't be worse... then after i gave up gluten, i felt abit better (after knowing i have FOUR first degree relatives with celiac). After giving up gluten however, i still felt tired, then i started giving up grains and dairy and eggs. I then felt alot better. im still working out what i can and cant eat but life does get better. However, after going on a paleo diet, im really struggling to see how i can sustain this for the rest of my life, honestly im really scared. My family think i am crazy for not eating rice oats etc. especially as rice is such a staple in my cultures food (middle eastern background). Noone really understand the severity of these symptoms and honestly im just looking for some anecdotes and help of people who are in a similar situation to me. one last thing is, in terms of my dating life, i dont even know how to approach that anymore. Having to ask a girl to wash her mouth out before i can kiss her? I really dont know what to do anymore at all.... would appreciate any help or kind words. Thank you. 

Hi Alan, 

First I want to say that I think that it is really cool that you are studying medicine! I think that having experienced gluten issues yourself, you will be better able to understand and support future patients. 

Sometimes it takes awhile for the people around us to really understand and come to terms with what is our new reality. Especially if the symptoms are not obvious to the outside world. 

Just out of curiosity, have you been tested?