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Thank You For This Site It Was Such A Comfort To See I Wasn't Alone


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8 replies to this topic

#1 jiggles

 
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Posted 26 March 2013 - 03:16 PM

Hello to all , this is my first post so please pop it in the right place for me ,
For many long hard years I have suffered with explosive D and tummy pain and nausea every day and most nights along with many other symptoms too .
The doctors said it was "IBS" D

fast forward to the last couple of years I have been in and out of hospital with two major tummy events and inflammation, tubes up my nose because I was so sick , and lots of drips to rehydrate me ,
and then I would have to go back in hospital with constant ongoing tummy complaints pain nausea D reflux and lost over four stone in weight last year ,

so they sent me for more tests to another hospital ,
the doctor there said my results came back as having mal apsorbtion and this was the reason I had lost weight
they said were going to test me for Celiac ! ... and if it wasn't Celiac the doctor said for me to try medication to firm up the stool

On hearing this I thought answers at last !.. But I didn't dare get my hopes up...

You see by this time I was in pain and felt so very poorly with the nausea and labrynthitis and I desperately wanted to feel even just a little bit better, so that I could simply have the strength to be able to cope with each day,
so I decided to stop the gluten right there and then.

But ... I know now that it is important to get those Celiac blood tests done first .

Within four days of starting the gluten free diet the diareoahh eased up ... now this was a miracle for me !...
I never thought this could ever happen,
Fast forward again to present day , I really want to say thank you today to you all on this site ,
for this site has helped me so much , I have always come here and looked around and felt comforted just knowing that I wasn't alone anymore and to have a glimmer of hope along with many others for any type of improvement in our health , the people on this site helped me more than you will ever know,

So a big thank you to all who post on here , even though I never felt well enough to join in,
I have lost most of my friends but two, due to always being sick and tied to the bathroom and turning down their offers of going anywhere,

The awful D had taken over and affected my life so very much , I had to rely on my hubby so much to see to the younger two children or my son to take over cooking dinner whilst I ran to the bathroom for hours over and over again then left feeling faint and drained I would head for bed ,
I missed lots of school events for the children's work or plays , they must have missed me not being there too.

Looking back everything about my symptoms pointed to gluten problems including osteoporosis in my late thirties, hair loss, awful headaches, labrynthitis , repeated very low iron levels , iron injections, because iron tablets would just go straight through, chronic anal fissures, a Casein intolerance
I had an intolerance York food test many years ago which showed intolerance to Casein in cows milk, cranberries and pork
amazingly Wheat never showed up at all !

I just think its so wrong be labeled with "IBS "and that people along with their families are still suffering for many years on, when there is a real cure out there that can give so many people a better quality of life

I just wonder why doctors didn't suggest going gluten free after the Celiac tests .

In all of those years of practically living in the bathroom .
I never had one single doctor advise a gluten free diet , and I have seen quite a few,
If only one doctor had mentioned " going gluten free " to me ! I would have listened intently ,
because we assume they know that we're suffering
and if there was a cure, we trust them that they would let us know rather than let us suffer needlessly !

The truth is ... most of them do not know !
You probably know more yourself .

The Doctor I am under at present does see a lot of Celiac patients and so this doctor is very understanding in fact he is a lovely doctor ,
He thinks I have Celiac disease but because I went gluten free my blood work isn't coming up positive ,
he says I have had a positive response to a gluten free diet along and with all my other associated symptoms,
it all pointed to Celiac .

I still have hiccups with the gluten-free diet along the way but its not a full year yet ,
so I am still learning, and still have a long way to go
plus I am lucky enough to have a good dietician to advise me too ,

One thing that does bring me to breath a sigh of relief, is being believed ,
I felt that some doctors didn't believe me, and that has such a negative effect for all involved.

I still don't have a proper diagnosis and I am not keen on doing a gluten challenge ,

but Tests say I have the positive DQ 2 gene
so I would be grateful for any info on this

And thank you being here I am so grateful to you all
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#2 Kamma

 
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Posted 02 April 2013 - 05:15 PM

Hello Jiggles,

 

You've had quite the journey to get to where you now are.  I'm glad you're finally feeling better and more able to join in your kids and husband's life.  Being stuck running to the bathroom and the consequence of isolation because of it is a horrible thing to bear. 

 

I can't speak to what your testing means - I'll let someone else who is more versed in these matters do so.  I just wanted to say welcome to the board.


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#3 funkflex

 
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Posted 04 April 2013 - 12:44 PM

It hurts to read stories like these. Hopefully you are now improving, and hopefully other conditions causing diarrhea are ruled out as well in the process.

 

"More than 95% of celiac patients share the major histocompatibility complex II class human leukocyte antigen (HLA) DQ2 or DQ8 haplotype; patients negative for both types are unlikely to suffer from celiac disease." http://www.ncbi.nlm....pubmed/11922565

 

Even though your bloodwork turns out negative, you could get a positive biopsy result. But as you have started a gluten free diet already, you might have messed up both blood tests and biopsies, making it difficult to diagnose if you have celiac or not.


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#4 Celiac Mindwarp

 
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Posted 05 April 2013 - 02:04 AM

Hi
I am sorry it has taken so long to get to the root of your problems.

I am in the UK too. I had been wheat free for years before being tested for celiac. I only lasted 3 weeks on a gluten challenge, I was so ill. I had a genetic test which was negative. Based on my history and response my GI dignosed non celiac gluten intolerance.

I have done a lot of reading and got advice here. I take it every bit as seriously as celiac, and will be gluten-free for life.

You obviously have other intolerances, hopefully you can get some help here.

The only issue I have come across is not being able to get foods on prescription (though I eat mostly whole foods anyway).

Glad you are improving.

I feel like the folks here helped me get my life back :)
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#5 jiggles

 
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Posted 26 April 2013 - 05:31 AM

It hurts to read stories like these. Hopefully you are now improving, and hopefully other conditions causing diarrhea are ruled out as well in the process.
 
"More than 95% of celiac patients share the major histocompatibility complex II class human leukocyte antigen (HLA) DQ2 or DQ8 haplotype; patients negative for both types are unlikely to suffer from celiac disease." [/size]http://www.ncbi.nlm....pubmed/11922565
 
Even though your bloodwork turns out negative, you could get a positive biopsy result. But as you have started a gluten free diet already, you might have messed up both blood tests and biopsies, making it difficult to diagnose if you have celiac or not.



Hi thank you for your advice it is much appreciated , I did tell my hospital doctor that my own GP thinks its Celiac ,
and my own GP said I needed a biopsy right from the start as he has seen me battle with this illness
Also my own GP said after fifteen years of eating gluten if its Celiac any damage will be there to see
I will mention this again to my hospital doctor , although its now been nearly a year of being gluten free
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#6 jiggles

 
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Posted 26 April 2013 - 05:58 AM

Hi
I am sorry it has taken so long to get to the root of your problems.
I am in the UK too. I had been wheat free for years before being tested for celiac. I only lasted 3 weeks on a gluten challenge, I was so ill. I had a genetic test which was negative. Based on my history and response my GI dignosed non celiac gluten intolerance.
I have done a lot of reading and got advice here. I take it every bit as seriously as celiac, and will be gluten-free for life.
You obviously have other intolerances, hopefully you can get some help here.
The only issue I have come across is not being able to get foods on prescription (though I eat mostly whole foods anyway).
Glad you are improving.
I feel like the folks here helped me get my life back :)


Hi yes I agree totally , any type of gluten intolerance can make you very poorly indeed , I don't think I could even attempt a gluten challenge, wow I think you we're very brave to go three weeks , it must have been really horrible for you

if I accidentally eat any gluten within an hour or so I go icy cold then start dry heaving I also feel faint and dizzy and need the bathroom quickly as my lower tummy goes rock hard I also get terrible cramping gas and mucus diarrhoea , it then takes me a few days in bed to get over the nausea and dizziness and up to two weeks or more for me to feel ok again ,
I noticed a lot of you on here eat mainly whole foods
so I too followed you all and mainly eat whole foods now after glutening myself so much with processed foods and sauces
I find whole foods healthier and easier ,
I get so excited that I can now eat a bit of fruit again after fifteen years which really amazes me ,
as I never ate bananas or fruit as they used to go straight through, plus bananas used to give me indigestion and awful wind pains for hours
So it's really lovely to eat some fruit again and for it to stay put in my body is another miracle for me ,
it makes me so happy and gives me something to look forwards to after my dinner
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#7 notme!

 
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Posted 28 April 2013 - 02:18 PM

your story sounds so familiar - anymore when anyone says 'ibs' to me i tell them that is a mythical condition in doctorspeak it means:  i don't know what is wrong with you.  usually followed by:  here, take some drugs lolz  

 

it was a miracle to me - after 2 1/2 yrs i am still healing.  it took a long time to do this much damage and i feel better all the time.   it sounds wierd, but i finally feel like myself again!  getting my 'mojo' back ?  i guess this disease also saps your confidence if it's left untreated...

 

congratulations  :)  i'm so happy for you!


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#8 1desperateladysaved

 
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Posted 28 April 2013 - 04:31 PM

Happy for you to join in, Jiggles!  I am happy your children got to learn how to cook.  All I could cook when I got married is scrambled eggs, hotdogs, chocolate cake, and cookies.  My children learned how because of my health struggle, so we can relate to that.

 

I am sure you are grieving for the last years.  Yet, I am happy for you that you are trying to get to the root of your problem.

 

Get well, I also hope you get a definitive answer.  I don't know much about genetic test interpretation, but there are some that do.

 

Diana


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#9 jiggles

 
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Posted 29 August 2013 - 10:46 AM

Thank you for all your replies , I just thought I would update ,

I spoke in detail to a qualified Nurse in Celiac UK and they advised that I ask my Gastro doctor for a Celiac diagnosis
on the grounds of a positive gene test and all the matching Celiac symptoms

So in May this year as I had an appointment with my Gastro doctor so I took along my Enterolab gene test with me ,

also my own GP requested that I once again ask the Gastro doc to perform an endoscopy as my GP thought that after 15 years any villi damage would still show up even after 10 months ,

So I presented my Gastro doc with all the above info
and he asked me " was the genetic test very expensive ? " .. and added that they may not be very reliable ,
he also told me " that they were already going to perform their own Tissue typing tests"

and regarding the endoscopy and request for the Celiac diagnosis ,

He suggested I do a "Gluten Challenge"

I told him I would think about it and let him know ,

I go back to see him soon but I am still puzzled and disappointed that they never went straight to endoscopy as my own GP suggested from the beginning ,

I started getting fatigue again with awful headaches again along with hair loss ,
My own GP gave me some blood tests and rang me to say my iron levels were low again, he has given me iron tablets, he also checked my Vitamin B12 levels and he said they were ok ,

but I have been getting a lot of muscle stiffness and joint pains in my back and my legs,
sometimes just like I had pulled muscles,

I noticed it subsided if I stayed away from certain fruit and vegetables , so I looked into it and I think it may be something to do with oxalates , I am now trying to eat low oxalate foods to see does it make a difference ,

I was reading about someone on here has been having painful joints and joint popping
and I was surprised to see that too can be another common symptom of high oxalates,

Has anyone else tried a low Oxalate diet for ongoing stiffness and aches and pains ? I would love to hear if it has helped anyone at all ?

I must say I am feeling much better now after going grain free , just lately I have been able to introduce small amounts of dairy which is very surprising .... I never dreamed I would get any dairy back again

and I am hoping I will be able to introduce other foods over time , eggs are usually a big problem , but I won't be rushing it ,

most gluten free foods upset my tummy at first , but I am very happy to tell you that I have only just gained my first few pounds,

but I guess our inflamed tums take time to heal first before they decide what gluten free foods they digest and absorb
I am still hoping I will get back some of the grains I lost ,

I did try the spray under the tongue vitamins D3 and B vitamins
but I never tried digestive enzymes , as I am still wondering what ones to buy in the UK ...

I would love to get rice back again, I sometimes seem to be very sensitive to it and ok at other times ,
I am wondering if different brands can make a difference .... Hmmm

But I don't mind waiting, hope keeps me going :)

I am finding it can be such a bizarre journey though :o

and it really is amazing the effects that food can have upon us all,

wishing speedy healing for all sore tums x x jiggles x x
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