Im New, Please Help!

[Klalu]

Hi there, I'm new and looking for support. I have been gluten-free for a couple of months now, and accidentally was glutened yesterday. I was wondering if anyone else has the symptoms I do. Also wondering if anyone has ideas or anything that makes them feel better when theyre accidentally glutened. I know symptoms can vary person to person, but I'm feeling really miserable and just want to feel like I'm not alone!

-D alternating with constipation( I know this and headaches are common)

-headache

-fever

-extremely foggy head/ trouble concentrating

-unless I'm focusing really hard, I sometimes dont catch when people are talking to me, its almost like I hear Charlie Browns teacher (whaah whaah whaah)

-trouble having conversations, Ill be saying something, completely lose track of what Im saying followed by uhhhs and umms, and have a hard time verbalizing what im thinking ad putting words together

-light headedness, sometimes it feels like my head is a foot higher than normal(weird perspective)

-everythings much brighter

-slight naseua

-weird mouth feeling, kindof the way your mouth gets right before your're about to throw up, but luckily I havent thrown up yet

-achey/ cant get comfortable

-mood swings, random anger outbursts, irritability

-sore eyes

I really appreciate any input! Thanks!

[tarni]

I'm a newbie too, first post this morning! I get the feeling there are a lot of informed and caring people in this forum who would be of more constructive support. But I just wanted to say that I have almost exactly all of the same symptoms as you listed (and I love Charlie Brown's WAAH WAAH)... but my nausea can be debilitating and I vomit violently almost every other day. My blood tests said there was a posibility of Celiac, but my endoscopy results came through today and they were negative... so I jumped on this forum, and I've been re-assured that going 100% gluten free may fix things even if the docs are a bit thingy about Ceoliac. Hang in there, I know it can be hard when no-one seems to understand, but I think they do here.

[quincy]

I'm a newbie too, first post this morning! I get the feeling there are a lot of informed and caring people in this forum who would be of more constructive support. But I just wanted to say that I have almost exactly all of the same symptoms as you listed (and I love Charlie Brown's WAAH WAAH)... but my nausea can be debilitating and I vomit violently almost every other day. My blood tests said there was a posibility of Celiac, but my endoscopy results came through today and they were negative... so I jumped on this forum, and I've been re-assured that going 100% gluten free may fix things even if the docs are a bit thingy about Ceoliac. Hang in there, I know it can be hard when no-one seems to understand, but I think they do here.

I went gluten free in late April. I had many of the similar symptoms. nausea, dizziness, spacey, D etc. I was under the impression that I was going to bounce back right away from removing gluten but instead I felt worse before I started to feel better 3 months later. still have some anxiety but I get through it each day.

some talk about gluten-withdrawal and it sure sounds like it to me. I went through that. It was awful but hang in there you will get better you need to give it 6 months.

[w8n2heal]

Reading your symptoms, it was like I had written them myself. I had everything you

mention, plus a few more, until going gluten free 4 months ago. Since then, every

symptom is either completely gone or much much better. Well, other than the eye

pain. It feels like it's bruised all around. Not sure what thats about if it's even

related to gluten. Haven't seen anyone else mention it.

[Reba32]

Unfortunately for some of your symptoms, there really is nothing to do for them but wait it out

For the nausea and diarrhea you can try Pepto or something similar (I can't use it because I get constipation, and Pepto is a binder!)

Some have said they have some relief of the intestinal pains by taking L-Glutamine supplements. I tried them and never felt any difference.

For headaches take whichever is your favoured pain relief, make sure it is gluten free!

After you've been gluten free a while, and if you are accidently glutened, your symptoms may be worse. The only thing you can do is just be more vigilant in watching what goes in your mouth. It's hard I know. Whenever my Aunt invites me to her house for drinks or lunch or something, I always get glutened, I'm almost to the point where I have to just say "no thanks, I'll just drink water"! when I go to her house. My sister's house is similarly dangerous to me.

[kitgordon]

I'm a newbie too, first post this morning! I get the feeling there are a lot of informed and caring people in this forum who would be of more constructive support. But I just wanted to say that I have almost exactly all of the same symptoms as you listed (and I love Charlie Brown's WAAH WAAH)... but my nausea can be debilitating and I vomit violently almost every other day. My blood tests said there was a posibility of Celiac, but my endoscopy results came through today and they were negative... so I jumped on this forum, and I've been re-assured that going 100% gluten free may fix things even if the docs are a bit thingy about Ceoliac. Hang in there, I know it can be hard when no-one seems to understand, but I think they do here.

Charlie Brown's has a gluten free menu.

[Mack the Knife]

I suffer from nausea when I get glutened and I find that ginger really helps. You can drink ginger tea or take ginger tablets that they sell for motion sickness.

[MelindaLee]

I've been gluten free for abut 6 weeks. I glutened myself (stupid story) last week. I noticed the neurological symptoms more than the GI ones. I had both, but the dizziness, fogginess, and tingling was worse than anything else. I agree with everyone else...just be careful. If someone told me 8 weeks ago I had celiacs I never would have believed them because I didn't think I had symptoms because I didn't have stomach/digestive issues. since I have been here...I realize how many symptoms I truly have. Welcome and Good Luck! This place is proof that we can live through...and thrive on this diet.!

[srall]

I'm on my 7th month. Your symptoms sound similar to mine...just add in some chronic joint pain and I'm there. I did have major gluten withdrawal for a couple of weeks. Felt great for awhile then started crashing again. That was other food intolerances rearing their ugly heads, plus probably becoming more sensitive to cc and hidden gluten. I'm still trying to figure out my perfect formula, but on my foggy and achy days (not sure if this is gluten, healing process or legitimate fatigue) I find lots of water and a good yoga class do wonders. Or a long walk. I need to exercise every single day as part of managing this.

Hang in there and good luck. I bet you'll feel great in a couple of weeks. Or months. But you'll keep improving.

[twinboys]

Hi everyone, I am new too and I was looking at all the replies and I would like to ask a couple or more questions. I have been tested but my doctor said that I am borderline and probably have irritable bowel syndrome. Then a year later I started vomiting every time I ate and was always nauseous that lasted for a few years. I have just decided on my own now to go gluten free as I am getting tired of feeling bad. So my question is should I get re tested to make sure I really have celiacs? I have more symptoms than just the vomiting. Don't know what to do?

[srall]

I'm self diagnosed. I just went off gluten and it was life changing. Don't need a formal diagnosis. Or I should say I can't bear the thought it reintroducing gluten for a test that may or may not be conclusive. The real test is how you feel off of gluten (IMO). Some people need the medical diagnosis. I did not because no matter what my doctor told me, I am not eating gluten ever. Ever.

[tarni]

I went gluten free in late April. I had many of the similar symptoms. nausea, dizziness, spacey, D etc. I was under the impression that I was going to bounce back right away from removing gluten but instead I felt worse before I started to feel better 3 months later. still have some anxiety but I get through it each day.

some talk about gluten-withdrawal and it sure sounds like it to me. I went through that. It was awful but hang in there you will get better you need to give it 6 months.

Thanks for this advice about possibly feeling worse before feeling better. I guess going gluten free is different for everyone, and hazy territory, and I'll be pretty much going it alone (without medical help). That is unless I change my GP (doctor)and find one who is more on board with celiac etc. We've had an excellent patient-doctor relationship since I was a teenager, but in recent years I get the feeling he is sick to the back teeth of what I'm sure he sees as hypercondria. Also, as with many people in my life, now that I am no longer such an attractive package: once popular, stylish, bright, energetic, athletic, sucessful in career, social etc etc... and now fatigued, sick, anxious and negative... I seem to have been 'dropped'. Even by my mother who when I raised the celiac issue a month ago she said I was making things up, and I had been a healthy child, and that she was ashamed of me as her friends have sucessful offspring... and to top it off a week later on my birthday she bought the most revolting card, and soiled the envelope with mud and hand delivered it to my letterbox... that was our last 'contact', and it feels pretty lonely because apart from my sister with non-verbal Autism, she is the only relative here in Australia. Anyone else felt estranged by family or friends? tarni

[mamaw]

Hello & welcome

Sometimes the distress just has to work its way out of your system. There are many things some have tried...seltzer water, vinegar,water, honey,pepto,glutenese(sp?) ginger tea(soothing for the tummy)

I've been gluten-free for years & have only been glutened once.... and that was enough for me !

The good news is some people cheat on the gluten-free lifestyle & make excuses to justify why or how they got glutened. Some have no will power. But since you are new to the gluten-free world , you have learned one of the most important lessons early in your new lifestyle. Read labels, always double check gluten-free products to make sure the mfg has not changed ingredients, be extra careful when dining out, always look out for CC. Being sick early on will hopefully make you more aware to be very careful...as I'm sure you wouldn't want this to happen very often....

Hope you feel better soon

blessings

mamaw

[gf-soph]

Thanks for this advice about possibly feeling worse before feeling better. I guess going gluten free is different for everyone, and hazy territory, and I'll be pretty much going it alone (without medical help). That is unless I change my GP (doctor)and find one who is more on board with celiac etc. We've had an excellent patient-doctor relationship since I was a teenager, but in recent years I get the feeling he is sick to the back teeth of what I'm sure he sees as hypercondria. Also, as with many people in my life, now that I am no longer such an attractive package: once popular, stylish, bright, energetic, athletic, sucessful in career, social etc etc... and now fatigued, sick, anxious and negative... I seem to have been 'dropped'. Even by my mother who when I raised the celiac issue a month ago she said I was making things up, and I had been a healthy child, and that she was ashamed of me as her friends have sucessful offspring... and to top it off a week later on my birthday she bought the most revolting card, and soiled the envelope with mud and hand delivered it to my letterbox... that was our last 'contact', and it feels pretty lonely because apart from my sister with non-verbal Autism, she is the only relative here in Australia. Anyone else felt estranged by family or friends? tarni

Firstly, what your mother said is horrible! I can't imagine how I would react to something that stupid and hurtful from my mother. All I can assume is that she has some problems of her own that she is reflecting on to you, because that is not a particularly sane reaction to having a sick child, no matter what she thinks is causing it.

I've had the experience of feeling isolated by by illness. Luckily for me the worst of it was due to depression caused by my gluten intolerance, which significantly improved a couple of months after going gluten free. I was seeing a psychologist already for the depression, she helped me to see that I felt like I had nothing to give anyone when I was sick, so i withdrew myself from others. Ironically I had actually hurt some of my closest friends as they felt I had stopped caring about them, when really I withdrew as i thought i wasn't good enough to be friends with them. Hope that makes some sort of sense. I'm not presuming to know if that's what's going on for you, but I do know what the isolation feels like.

I think that being sick for a long time can really strip away a lot of your self esteem, for me I didn't do as well as I should have in my final year at uni, I wasn't able to start further study as I was too sick, and I stopped going out and socialising with almost everyone due to feeling so unwell. It's a hard way to learn it, but being sick can show you whether your self esteem is conditional on others. For me, it was conditional on being smart and academically successful, on being funny, on giving to others and supporting them. When I wasn't able to do that, I felt awful about myself, fundamentally worthless. It's hard hard work, but seeing a psychologist and allowing her to really call me on these issues has really helped me to cope over time. I'm not perfect, but it's helped to heal some deep pain, and change the way i look at some situations.

It sounds like you need support to help you through this process. I would really encourage you to reach out to your friends, some of them may surprise you if you can open up to them. I had been sick for a year by the time that I found out my friends had no idea what i was going through. I thought they had seen enough of my pain, of my last minute cancellations when i couldn't leave the house, but they had no real idea how sick i was or how hard i was finding it to cope. I had to spell it out to them, but we were all glad i did. Your lack of family and your mother's behaviour really sucks, I know I relied on my immediate family quite a bit, especially at first, and it's important to be able to talk to people when you are having a bad time.

If you are able, seeing a psychologist could really help you, you can get a referral from your gp so it's less expensive. It sounds like you might need some help navigating your relationship (or lack of it) with your mother, not to mention coping with feeling so unwell. It can help when you have someone who is just there for you, and has no preconceived opinion of you - I know it helped me. If not, you're always welcome to vent here, lots of us do

Also, If you're looking for a better informed GP, you can post the general area where you live, and see if anyone knows a good dr in the area. There are quite a few aussies here, including myself, so you never know! Alternately, contact your state celiac society, they may well be able to give you the details of allied gps, or maybe even a dietician would help.

Hope things get better for you soon.

Sophie

[tarni]

Firstly, what your mother said is horrible! I can't imagine how I would react to something that stupid and hurtful from my mother. All I can assume is that she has some problems of her own that she is reflecting on to you, because that is not a particularly sane reaction to having a sick child, no matter what she thinks is causing it.

I've had the experience of feeling isolated by by illness. Luckily for me the worst of it was due to depression caused by my gluten intolerance, which significantly improved a couple of months after going gluten free. I was seeing a psychologist already for the depression, she helped me to see that I felt like I had nothing to give anyone when I was sick, so i withdrew myself from others. Ironically I had actually hurt some of my closest friends as they felt I had stopped caring about them, when really I withdrew as i thought i wasn't good enough to be friends with them. Hope that makes some sort of sense. I'm not presuming to know if that's what's going on for you, but I do know what the isolation feels like.

I think that being sick for a long time can really strip away a lot of your self esteem, for me I didn't do as well as I should have in my final year at uni, I wasn't able to start further study as I was too sick, and I stopped going out and socialising with almost everyone due to feeling so unwell. It's a hard way to learn it, but being sick can show you whether your self esteem is conditional on others. For me, it was conditional on being smart and academically successful, on being funny, on giving to others and supporting them. When I wasn't able to do that, I felt awful about myself, fundamentally worthless. It's hard hard work, but seeing a psychologist and allowing her to really call me on these issues has really helped me to cope over time. I'm not perfect, but it's helped to heal some deep pain, and change the way i look at some situations.

It sounds like you need support to help you through this process. I would really encourage you to reach out to your friends, some of them may surprise you if you can open up to them. I had been sick for a year by the time that I found out my friends had no idea what i was going through. I thought they had seen enough of my pain, of my last minute cancellations when i couldn't leave the house, but they had no real idea how sick i was or how hard i was finding it to cope. I had to spell it out to them, but we were all glad i did. Your lack of family and your mother's behaviour really sucks, I know I relied on my immediate family quite a bit, especially at first, and it's important to be able to talk to people when you are having a bad time.

If you are able, seeing a psychologist could really help you, you can get a referral from your gp so it's less expensive. It sounds like you might need some help navigating your relationship (or lack of it) with your mother, not to mention coping with feeling so unwell. It can help when you have someone who is just there for you, and has no preconceived opinion of you - I know it helped me. If not, you're always welcome to vent here, lots of us do

Also, If you're looking for a better informed GP, you can post the general area where you live, and see if anyone knows a good dr in the area. There are quite a few aussies here, including myself, so you never know! Alternately, contact your state celiac society, they may well be able to give you the details of allied gps, or maybe even a dietician would help.

Hope things get better for you soon.

Sophie

Thanks Sophie, and I could say "snap! me too" to nearly every issue you raised.

But firstly re my Mother, yes it is obviously a problem with her attitude to/feelings for to me. It has been there all my life... almost a deep-seated hatred for the bright pretty girl that entered the marriage and took away her husband... (v Freudian I know). Everything is fine out in the world especially when I am a poster-girl for her to show off, but behind closed doors the verbal abuse and psychological manipulation know no limits, especially when I am vulnerable. And its targeted, she keeps up a different facade for other people (the only other person I saw who got this venom was my late Dad... they seperated then divorced when I was young). This time she went too far, I should have done this years ago, two different psychotherapists in the past have said it seems to deep-seated to ever be reconciled, you should just walk away. So new diet, new lifestyle (when I feel well enough I will visit good friends in Broome WA, to see if I could relocate, from Adelaide, to there... tropics, multicultural and laid back ), and no more turning myself inside out trying to please someone that takes glee in kicking me when I'm down.

Now, enough of my family drama! re friends, yes it has been mainly me removing myself from activities/contact. Sometimes because I just feel left out because I haven't got a great lifestyle to chat about, can't keep up, and sometimes I feel put down. I guess celiac could be seen as a wake-up call/gift... not only do I know what lifestyle I really would like, but what sort of people make good friends. When I feel better, I plan to do as you advise and seek out the good ones and try to explain.

And yes, I'm usually the academic, travelled, funny giving one, so my quiet ungiving personae doesn't fit well. And yes my self esteem is a bit worse for wear at the moment.

And finally, yes in my Honours year (ironically in Psychology) I had an unplanned pregnancy, was violently ill and miscarried (difficult to explain to male academics) so I only got a second class, and therefore didn't get a scholarship to do my much anticipated PhD in child pysch.

Anyway 'moving forward' I plan to make an appointment with a dietician this week, and try to ascertain whether I may have other intolerences: dairy, soy etc before going on my full blown 100% gluten-free diet.

Thanks for a place to chat, tarni

[gf-soph]

I have seen a lot of messed up family dynamics play out in my extended family, and I have seen good people remove themselves from family they love in self preservation (my father had no contact with my Aunt for about 10 years, fortunately now we do). Down the track sometimes things do work out and people change, but you can't live your life in misery because of other people, no matter who they are.

It sounds like you have a great deal of understanding and self awareness about this, which is so important. I wish you luck dealing with her

The similarities otherwise are almost uncanny, from the reasons for withdrawing from friends (snap!) to the honours in psychology, looking towards child psych - double snap! Your experience is so much harder than mine, for me it was a nasty flu for the month between semesters which kicked off all hell digestively, massive brain fog and so unwell for the rest of the year. I didn't realise how sick I was and didn't even consider asking for special consideration, and ended up with a second class honours.

Are you sure that there is no way you can do a phd down the track? Getting a first isn't the only way to get a scholarship. I am working as a research assistant, and have spoken to a lot of the academics. They are always reinforcing that not getting a first class makes things harder, but not impossible. If you can get some work of RA work with someone in the general resaerch area, they can often support your application for phd. A big criteria is publications, so you may be able to help out preparing research for publication, and get listed as a final author. This has been offered to me down the track. There are also non traditional scholarships that pop up within research grants or for specific academics. Anyway, just a thought that it may not be totally impossible, getting contacts within research is the single best thing you can do.

Good luck with the dietician and starting the diet, and any questions you have I'm sure you can find answers here.

Sophie

[tarni]

Thanks again Sophie

Yes, the 'snaps' and 'double snaps' in our lives are pretty uncanny, but I think one can be kind of intuitive about people even across the 'net in a forum.

I decided last night to bypass a dietician (I'm just so fed up with the whole system), and as of today I'll just go 100% gluten, dairy, soy and more... free. I've picked up lots of shared information from this forum to help me along this journey, and I'm sure I'll have heaps of questions which I'll post under a fresh topic. See you (seeya... in Aussie speak ) there.

Tarni

[Loey]

Thanks for this advice about possibly feeling worse before feeling better. I guess going gluten free is different for everyone, and hazy territory, and I'll be pretty much going it alone (without medical help). That is unless I change my GP (doctor)and find one who is more on board with celiac etc. We've had an excellent patient-doctor relationship since I was a teenager, but in recent years I get the feeling he is sick to the back teeth of what I'm sure he sees as hypercondria. Also, as with many people in my life, now that I am no longer such an attractive package: once popular, stylish, bright, energetic, athletic, sucessful in career, social etc etc... and now fatigued, sick, anxious and negative... I seem to have been 'dropped'. Even by my mother who when I raised the celiac issue a month ago she said I was making things up, and I had been a healthy child, and that she was ashamed of me as her friends have sucessful offspring... and to top it off a week later on my birthday she bought the most revolting card, and soiled the envelope with mud and hand delivered it to my letterbox... that was our last 'contact', and it feels pretty lonely because apart from my sister with non-verbal Autism, she is the only relative here in Australia. Anyone else felt estranged by family or friends? tarni

I'm also a "newbie." I have already benefited so much from this forum. Everyone is willing to take the time to share their experiences and as you go to the different forums you'll find different stories.

It seems to take some people more than a few months to feel like their "old selves" again but we all need to take it easy on ourselves. I am very lucky to have an extremely supportive husband but we moved to a new state literally the day after all of my tests came back. I know absolutely no one where I now live so I feel pretty isolated and lonely and relate to how overwhelming this is for you

My old GI wanted me to make sure my new GI did a capsule endoscopy. When I saw him for the first time I was feeling better and had pretty much just made the appointment to find a new a GI and to get my son tested genetically before he left for college (and we set up a specific meal plan). Thankfully he doesn't have the gene.

We all seem to have different trigger points and that can make us have flares. I just discovered I can't have canola oil and several of the food lists and guides list it as all right.

Try to remember that you're not alone. You have this forum. It's been a Godsend to me because I've been really homesick, and too sick to look for a job. I'm an elementary and special education teacher so I can start out subbing and not take a job if I have a bad day but right now I'm on such bad shape I haven't even handed in the paperwork. I'm a resource geek so if you ever want me to research something for you (and the offer extends to anyone else on these boards - (though most of you are more experienced than I) just let me know. In the meantime, try to hang in there!

Loey

[notme]

Loey

that was my mom's name: lois (also my middle name) but we always called her 'loey' - she has been gone for 4 years - every day i want to call her and tell her how healed i am now that they finally figured out what is wrong with me. she always worried over my (lack of) weight. nice to see you, loey

[tarni]

Try to remember that you're not alone. You have this forum. It's been a Godsend to me because I've been really homesick, and too sick to look for a job. I'm an elementary and special education teacher so I can start out subbing and not take a job if I have a bad day but right now I'm on such bad shape I haven't even handed in the paperwork. I'm a resource geek so if you ever want me to research something for you (and the offer extends to anyone else on these boards - (though most of you are more experienced than I) just let me know. In the meantime, try to hang in there!

Loey

Thanks Loey, yes this forum has helped me greatly, its not just the information and advice but the understanding and care. I no longer feel alone, lost, afraid and helpless. I too have a teaching degree, and have done subbing/supply/relief teaching in the UK and Oz. More recently I have been teaching at uni, but I've had to take leave as I have been so unwell in many ways. And yes, even paperwork is a struggle for me at the moment... even all the medical forms are a huge challenge. But I know I'm on the right track now. I see a dietician for more tests and guidance soon. I had two really good days, but then yesterday I made felafels from a packet from a gluten free store... and today I feel pretty rotten... I'll just let it work its way through my system... and avoid those sort of pre-prepared foods. (Always learning!).

tarni