Please allow me to introduce myself....

[Toxic Glutension]

Hello to everyone here. As I am sure in the same way that many of you have found this site, I am here trying to work out what on earth is happening to me. I have had no medical diagnoses as yet, but I am going to start that as soon as the new year allows.

I first started to cut things from my diet about 2 years ago, as I felt things were not right, and getting worse. It took me a year to get to bread (I know, but I like bread) then soon after, all gluten.

The effects were immediate. My vile bowels were first to improve, and an easing in the bloating. The numbness in my hands disappeared. Perhaps the biggest change for me was that after 22 years my sinuses cleared, and with that the near daily headaches of varying pressures stopped. This was major as in those 22 year I would say conservatively, I spent 65-70% of that time breathing through one nostril.

I am from the UK (although I have been living in Spain for some years now), and when I used to go to see a doctor I never received any help, other than “Here is a course of antibiotics, that will solve everything.” “But, I have tried them loads of times, it doesn’t help.”  “Yes, Yes. Here is a course of antibiotics that will solve everything. Now get out!”. Even though while growing up I was tested for anaemia, was very small for my age, had anxiety issues and had big problems with mouth ulcers…..

I gave up on doctors some years after continuing this routine.

However!

I would like to say that I am so pleased to have found these forums. In this last year I have become very despondent about looking on gluten free/Coeliac websites. As I said I am from the UK and will be seeking medical aid there. So I restricted my searches to the UK to try and minimise confusion.  All fine, plenty of info about the Physical side of things, but very little about the mental side of it. If any UK members see this I would love to hear if you feel the same way or if I have just been very unlucky in my searching.

I am so pleased to have found forums (all due to google asking if I would prefer to search the U.S. spelling, celiac) with real people on it, many of which I have read with the whole range of emotions.

It isn’t just me! The depression, fogging, anxiety, insecurity, irritability, anger. I’m not just a head job. I am so relieved. I have read a lot of things that I could have written myself. I have found out that although I have not once willingly eaten anything with gluten in it for a year (I haven’t broken that once), due to other stresses and my own ignorance, I now know I have been contaminating myself all that time. So, thank you all for the things you have shared.

My partner and I have had a really hard couple of years. Major family problems and bereavements on both sides and we both work 6 days a week. More than enough for us to cope with. Add to it my condition and you can imagine. My partner is the most wonderful woman, and I love her completely. She has been so tolerant, but now I have to get things sorted (at least now I know it which directions to move), because I can not bear the idea of losing her.

Excuse me if this has turned into a bit of a novel, but I hope someone read this cos it has taken my presently jellied brain hours to write this!

Ian.

[MarcMoncravie]

1 hour ago, Toxic Glutension said:

Hello to everyone here. As I am sure in the same way that many of you have found this site, I am here trying to work out what on earth is happening to me. I have had no medical diagnoses as yet, but I am going to start that as soon as the new year allows.

I first started to cut things from my diet about 2 years ago, as I felt things were not right, and getting worse. It took me a year to get to bread (I know, but I like bread) then soon after, all gluten.

The effects were immediate. My vile bowels were first to improve, and an easing in the bloating. The numbness in my hands disappeared. Perhaps the biggest change for me was that after 22 years my sinuses cleared, and with that the near daily headaches of varying pressures stopped. This was major as in those 22 year I would say conservatively, I spent 65-70% of that time breathing through one nostril.

I am from the UK (although I have been living in Spain for some years now), and when I used to go to see a doctor I never received any help, other than “Here is a course of antibiotics, that will solve everything.” “But, I have tried them loads of times, it doesn’t help.”  “Yes, Yes. Here is a course of antibiotics that will solve everything. Now get out!”. Even though while growing up I was tested for anaemia, was very small for my age, had anxiety issues and had big problems with mouth ulcers…..

I gave up on doctors some years after continuing this routine.

However!

I would like to say that I am so pleased to have found these forums. In this last year I have become very despondent about looking on gluten free/Coeliac websites. As I said I am from the UK and will be seeking medical aid there. So I restricted my searches to the UK to try and minimise confusion.  All fine, plenty of info about the Physical side of things, but very little about the mental side of it. If any UK members see this I would love to hear if you feel the same way or if I have just been very unlucky in my searching.

I am so pleased to have found forums (all due to google asking if I would prefer to search the U.S. spelling, celiac) with real people on it, many of which I have read with the whole range of emotions.

It isn’t just me! The depression, fogging, anxiety, insecurity, irritability, anger. I’m not just a head job. I am so relieved. I have read a lot of things that I could have written myself. I have found out that although I have not once willingly eaten anything with gluten in it for a year (I haven’t broken that once), due to other stresses and my own ignorance, I now know I have been contaminating myself all that time. So, thank you all for the things you have shared.

My partner and I have had a really hard couple of years. Major family problems and bereavements on both sides and we both work 6 days a week. More than enough for us to cope with. Add to it my condition and you can imagine. My partner is the most wonderful woman, and I love her completely. She has been so tolerant, but now I have to get things sorted (at least now I know it which directions to move), because I can not bear the idea of losing her.

Excuse me if this has turned into a bit of a novel, but I hope someone read this cos it has taken my presently jellied brain hours to write this!

Ian.

Your symptoms are identical to mine prior DX 09/13. Stay as clean as possible- no gluten. I still experience some psychological and physical worries but to a lesser extent than prior DX.

[Toxic Glutension]

Thank you MarcMoncravie, 

I have now taken contamination far more seriously. And for this last year I have been so good and not given in to any bready urges at all. Of course now I am thinking the Doctor is just going to tell me to eat gluten anyway for testing, which I am dreading. Thanks for taking the time to reply Marc it is nice not to be feeling alone with all this :-)

 

[manasota]

Welcome to you both!  You, most definitely, are NOT alone in your suffering and your feelings of isolation.  I know it can be difficult when you go to your usual "support group" of friends and they simply cannot understand your situation--no matter how hard they may try.  Even my internist (of 8 years duration) admitted at my last visit that he "honestly could not understand or relate" to my suffering--even though he clearly believes me when I try to describe things to him.  He went so far as to say he "admires my optimism and tenacity" in the face of such difficulties.  I wish for both of you to find someone who says similar things to you.

In lieu of finding "real people" to support you in your daily struggles, I recommend you frequent this website and make use of the very real and helpful advice offered here.  Most of the people here are genuinely interested in trying to help you and make great efforts to do so.  There is a wealth of experience here; so just keep reading!  

Most importantly, don't be afraid to ask questions.  You can safely ask all the embarrassing stuff that you are reluctant to ask the people in your life.  You can ask away, mostly free from judgement.  Once in a great while, there will be a "jerk" on here who is unkind; but the others will soon step in to help you.  Be patient.  Be tenacious.  Never give up on your health.  Never.  If I could, I'd hug you both.

Pat yourself on the back for your courage in coming here.  It took me over 5 years of being gluten free after my Celiac diagnosis to actually write a post here.  After so many years of suffering in private, and so many years of non-support, I was too afraid to reveal myself here (or anywhere).

In closing, maybe try not to hate the medical system for "letting you down" for so many years?  (This has been a problem for me.)   Most medical people are doing their best WITH THE KNOWLEDGE THEY HAVE.  Celiac disease simply has not been well-understood for very long.  And there is still MUCH to be discovered about it.  Fasano has written a great book that helped me gain perspective on these issues.  It's called GLUTEN FREEDOM.  Very easy to understand and very thorough coverage of gluten issues.  Maybe that will help you gain some peace this holiday season.

HAPPY HOLIDAYS!

[Toxic Glutension]

Hello Manasota,

Happy Christmas to you. Thank you for the book reference I will look that up. And thank you for such a thoughtful reply. It has come as a great relief to me to find these forums. Obviously that has opened a whole new can of worms and worries, but at least I feel I have something to aim at. Rather than feeling like like a peasant from the 18th century, who fears his head has been possessed by a demon!! I don't have any doctor issues, I just stopped going. As you say, it is years later now, I am sure they will do better now so I will go back. Just a shame nothing was spotted, but hindsight is a wonderful thing.

 

,

 

[squirmingitch]

I also welcome you both! 

Ian, one of my most frightening symptoms was the rage -- what I was going through can't really be termed anger - it was pure rage and it scared the hell out of me much less those around me. Funny thing is my hubs also has celiac. We found that out 5 months after myself. He had "the crazies" too. Can you imagine both of us in the same household with raging anger 24/7? I am still amazed we didn't split up. 

Yes, gluten can affect your emotions, your brain as much as your body. It's all tied together. When your body isn't getting proper nourishment then your brain doesn't function as it should. 

[Toxic Glutension]

7 hours ago, squirmingitch said:

I also welcome you both! 

Ian, one of my most frightening symptoms was the rage -- what I was going through can't really be termed anger - it was pure rage and it scared the hell out of me much less those around me. Funny thing is my hubs also has celiac. We found that out 5 months after myself. He had "the crazies" too. Can you imagine both of us in the same household with raging anger 24/7? I am still amazed we didn't split up. 

Yes, gluten can affect your emotions, your brain as much as your body. It's all tied together. When your body isn't getting proper nourishment then your brain doesn't function as it should. 

Good morning Squirmingglitch and thank you for your welcome.

I can't really imagine, If that was my partner and I both in a rage. No don't like to think. Fair play to both of you, really. I was thinking about this in the last week since I have found the useful information. I can now at least focus my thoughts towards a specific problem and set of goals. Before I was just worrying in all directions and getting nowhere, apart from thinking that I must be going mad and Just driving up the levels of anxiety, depression, self doubt......

I wonder if anyone can offer any advice about how I am feeling at the moment? In the last week and a half or so I have learned that I have not been even close in my efforts to avoid contamination. This I have changed dramatically since I discovered my foolishness. However, I know on reflection, that in the last month I have contaminated myself twice for certain (one of which even I find hilarious), possibly four time. Basically, mentally and physically I am a mess. Last week my mind was a disaster, all the bad emotions, but thankfully no rage, or even irritation really. That has now settled down. Not good but stable. Now for the last 3 day I have been feeling physically vile. From the top of my neck down my back, and out across my shoulders fills packed with glass. stomach cramps, hot and cold flushes. My concentration and co-ordination are both awful. As for my skin. I feel like I am oozing toxins. Cold turkey? Now I see I don't have much choice but to ride it out. But I wonder what you guys do (if anything) to ease the ride? I will carry on looking through the forums for this info as I am sure it is there, but I have read so much here in the last few days. trying to navigate backwards to it had become blurry. :-)  

 

[MarcMoncravie]

3 hours ago, Toxic Glutension said:

Good morning Squirmingglitch and thank you for your welcome.

I can't really imagine, If that was my partner and I both in a rage. No don't like to think. Fair play to both of you, really. I was thinking about this in the last week since I have found the useful information. I can now at least focus my thoughts towards a specific problem and set of goals. Before I was just worrying in all directions and getting nowhere, apart from thinking that I must be going mad and Just driving up the levels of anxiety, depression, self doubt......

I wonder if anyone can offer any advice about how I am feeling at the moment? In the last week and a half or so I have learned that I have not been even close in my efforts to avoid contamination. This I have changed dramatically since I discovered my foolishness. However, I know on reflection, that in the last month I have contaminated myself twice for certain (one of which even I find hilarious), possibly four time. Basically, mentally and physically I am a mess. Last week my mind was a disaster, all the bad emotions, but thankfully no rage, or even irritation really. That has now settled down. Not good but stable. Now for the last 3 day I have been feeling physically vile. From the top of my neck down my back, and out across my shoulders fills packed with glass. stomach cramps, hot and cold flushes. My concentration and co-ordination are both awful. As for my skin. I feel like I am oozing toxins. Cold turkey? Now I see I don't have much choice but to ride it out. But I wonder what you guys do (if anything) to ease the ride? I will carry on looking through the forums for this info as I am sure it is there, but I have read so much here in the last few days. trying to navigate backwards to it had become blurry. :-)  

 

I ride it out due to an absence of anything in my house that helps. I get severe joint pain coupled with chills, nausea, vomiting, dizziness coupled with balance issues. Basically I experience documented gluten side effects.

[Toxic Glutension]

 

I ride it out due to an absence of anything in my house that helps. I get severe joint pain coupled with chills, nausea, vomiting, dizziness coupled with balance issues. Basically I experience documented gluten side effects.

Yes I see. I was just wondering, if with practice you guys can gauge when you have contaminated yourselves by your symptoms, or is it more a case any of these symptoms can pop up whenever until your system is gluten free?

[manasota]

Ian,

I have to say that I have no idea what would happen to me if I got "glutened".  From Day #1, I was FANATICAL about avoiding gluten.  There are people on this site who do know exactly what happens to them when they come in contact with gluten.  The reactions seem to vary from person to person.

My main recommendation would be to make your diet, as much as you possibly can, ONLY whole foods that you make yourself.  I know this is a ridiculous amount of work & time--especially if you're not already a cook.  I have always hated cooking and resisted this path for 3 years.  Not worth it for me.  Once I went to only eating whole foods I made myself, my symptoms noticeably diminished.  I still don't consider myself well; but you must take into account my advanced age at diagnosis.  I'm pretty sure you will do much better!

Actually, serendipitously, as I went to only whole foods for me and my husband, we noticed HIM getting much better too.  We now believe he has NCGS (Non-Celiac Gluten Sensitivity). 

We have found we do much better with meat, fish, veggies, fruit, nuts, spices.  Absolutely no sugar, chocolate, or any grains.  Yes, it is boring sometimes and we do miss things--but we don't miss the symptoms!  Most people on this site are able to enjoy a much wider diet than we do.

Marc,

For the severe joint pain, I have taken Lortab.  For the dizziness, I used meclizine.  For the vomiting (which I never had), you might try Zofran, oral-disintegrating tablets.  I only needed this stuff short-term and it helped a lot!  If you go this route, be sure to check the gluten status of any meds you take.  I'd hate to see you suffer needlessly when meds may help.

Ian,

As for the "detox", you will find varying opinions on this topic.  I am convinced I went through detox with "stuff" doing anything it could to exit my body.  Lots of bumps, & oozing, & exudates.  I had all sorts of "crazy" rashes that none of the dermatologists could identify.  I gave up asking them.  All kinds of itchy, greasy stuff coming off me.   I literally could not wait to shower every day.  My feet actually used to stick to the shower floor!  And, the shower used to really stink when I was done!  Of course, these issues are items I have NEVER seen on this site; but it did happen to me!  My husband can verify.  HA!

[notme]

yep, you are going to be detoxing -- mine was complete with withdrawals (sweating, shaky, sickly)  and i kept re-glutening myself because i had no idea what i was doing, so, one step forward, 1/2 step back, but after about 2 weeks of eating completely clean, each day began to be better and better.  i would advise you to read the 'newbie 101' locked thread located in the coping section of the forum.

honestly, when i first found this forum, i read and cried and read and cried some more.  i could have written most of the posts i read.  o, wow, that's why i have this rash)  yes, i was treated like a crazy freak and honestly, doctors don't know enough or are seriously under-educated about this disease.  it's pretty important because it affects your whole body!!  you should start to feel better soon, but manasota is correct - make your own meals at least for awhile.  i still have a very short list of places i will eat outside of my own kitchen.  lolz - every day's a picnic, literally, because i'm always packing food to eat !!  

i can usually time if i accidentally eat gluten to about 24-48 hours (it will come on gradually most times, starting with the headache)  and it will take 14 days to leave completely.  in the mean time, i'm taking long showers and drinking lots of water, saving time for naps and staying pretty close to the bathroom (sorry)  take heart, you will get better at keeping yourself and your food 'safe' - welcome to the forum   good luck!

[manasota]

Notme!

YES!  "Everyday's a picnic!"  I love that!  I love that way of framing an annoyance.  Turning a chore into a delight!!!!!!!!!!!!!!!  I have got to remember that!

[GFinDC]

Hi Toxic (Ian),

Symptoms and reactions do vary a lot between people.  It's been quite a while since I glutened myself, but I used to get a stomach gas in about 30-45 minutes with a belch that had a distinctive (to me) smell.  I always recognized it meant I had gotten into some gluten.  Then several days of constipation followed by diahrea.  The fun continued from there.

Anyhow, some things I like for symptoms are peppermint tea, Pepto-Bismol, aspirin, lots of water and sleep.

Welcome to the forum!

 

[notme]

6 minutes ago, manasota said:

Notme!

YES!  "Everyday's a picnic!"  I love that!  I love that way of framing an annoyance.  Turning a chore into a delight!!!!!!!!!!!!!!!  I have got to remember that!

lolz - i wish i could take credit but i stole it from a meme - but i do like the positivity/sarcasm    

[Toxic Glutension]

I really can't thank you kind people enough for taking the time to reply to me here.

"when i first found this forum, i read and cried and read and cried some more.  i could have written most of the posts i read.  o, wow, that's why i have....." That sums it up for me too Notme! I have taken a real boost from the things you have written here and in the many other forum posts. I have also found a lot of stuff that has scared me too, but I am eager to go and get back into the medical system again and find out what is broken. At least now I will be able to pester the doctor with too many annoying relevant questions, instead of staring at him/her like a dog who has been shown a card trick!

I don't know what I will do when the doctor says there is nothing wrong with me and I am just a lunatic!  

Diet wise I try to keep my food as simple as possible, but I could certainly do with eating more green stuff. My problem is I just don't like eating any more.

'Newbie 101'. Thank you for the reminder. I knew I had seen it, but as you say, I have read, and read and...

[manasota]

Ian,

IF your doc says there's nothing wrong with you and that you're a lunatic, FIRE THE B_____D!  Run, don't walk to the nearest exit and never look back!  He/She is stupid!!!  

Things WILL get better for you!

Hugs!

[Toxic Glutension]

10 hours ago, manasota said:

Ian,

IF your doc says there's nothing wrong with you and that you're a lunatic, FIRE THE B_____D!  Run, don't walk to the nearest exit and never look back!  He/She is stupid!!!  

Things WILL get better for you!

Hugs!

Thank you Manasota,

I don't think the doctors will be quite so dismissive, but I am worried about how much beating about the bush I will have to listen to before we get to the nitty-gritty of the subject. But as you rightly say I have the legs to find a different doctor if things aren't going fast enough for me. :-)

[Toxic Glutension]

Hello to you all and happy new year.

I don't have anything to say just yet. Other than I have moved country since I last signed in and i am now busy trying to crowbar my way into the medical system. 

I just wanted to say thank you so much for the help I have received on my post. You really have my gratitude. I received a real boost from you and have made me feel like I know how to move forward in the right direction. 

I will come back and tell you what the doctor says.

[manasota]

Wow, you have been busy!

Good luck with your new country!

[Toxic Glutension]

Hello again everyone, 

So, as I said before i am back in my home country after not living here since 2003. All a bit of a shock on it's own, regardless of the medical side.

As far as the medical side, things are moving forward well. By not remembering how the system here really worked (and paying my way through a couple of doors) I have managed to shoehorn myself into getting seen some 8 weeks or more before I otherwise would have. Which seems terrible for people not  in a position to pay. 

I got to see a gastroenterologist on the 7th January. She looked at the notes I took and asked me some questions. Then I told her it was my amateur opinion the I think I have celiacs disease. She said to me that she thought that I have probably had it all my life (not sure how I feel about this at 41), but she wanted me to do a gut biopsy to check for everything else too. The outcome being that I go in for my biopsy on the 26th of January which is great in so far as timescale.

Now for the downside. She sent me home to eat gluten! Now 8 days later and I am feeling like I have been run over by the bread truck followed by a beating from the pilsbury doughboy for making his tyres dirty! I am only glad that by the day of the biopsy I will only have had to be eating gluten for 19 days. I seriously can not imagine how anybody could manage a full 12 week gluten Challenge. I have 11 days to go and I'm getting a bit scared about how I will feel by then. After going  year whithout intentionally eating gluten, I am completely suprised by the way my body has reacted, and how I forgot so many things. Worse of all it is thoroughly back in my head too. I am feeling about as stable very wobbly jello!

However! It I hadn't found you all on this site I think I would be feeling a whole lot worse. So thank you.

Next doctors appointment is on the 22nd when I go back to get the results from my blood tests. I even got sent for a chest X-Ray, which surprised me. 

Kind wishes, Ian (on his farwell to all pies tour).

[squirmingitch]

Hang in there Ian. You're in the home stretch. One day at a time. You can do it.

[notme]

lolz " farewell to all pies tour  "     sounds about right !!  good luck !!

[manasota]

LOVE your sense of humor!  I have found that maintaining a good sense of humor can defeat a LOT of ills.  Keep it up!

[Toxic Glutension]

Thank you guys. 9 days to go now, and I am finding it harder and harder to see the funny side of things. The cramps, mal-absortion, fatigue, glassy spine, headaches...... And to finish it all off I am getting into the head problems now. I am getting the darkest, ugliest thoughts to make time drag. I just want tosleep till the 26th.

[manasota]

Ian,

I can, most definitely, relate to your suffering!  Celiac can do really CRAZY stuff to some of us!  You aren't alone.  My advice is to baby yourself as much as possible.  Love yourself as well as you love others.  Keep reminding yourself that this nasty state you're in is TEMPORARY!  Keep your eyes on the goal.  Be gentle with yourself.  Give yourself every possible pleasure that you can during this SHORT time.  Treat yourself in small ways that you normally don't take the time to do.  Whatever you like, enjoy, want...DO IT NOW!  It doesn't matter how silly it may seem to anybody.  Nobody is watching.  Nobody is keeping score.  (Make sure you don't!)  It's TEMPORARY!  Churchill said, "When you're going through Hell, just keep going!"