jiggles

Hi, I have suffered for over fifteen years with IBS. D bloating wind pain and nausea

but after getting progressively worse in the last few years and losing a lot of weight

the main hospital doctor suspected Celiac disease after my Sechat results showed mal apsorbtion

but on my follow up appointment the doctor was looking for my Celiac results in my notes
and apparently his colleague had not taken my blood samples to test specifically for Celiac

And by this time I decided to go Gluten free to see if it would help me

So not surprisingly my blood test results didn't show anything up

I did do a home blood test from personal diagnostics which was positive for celiac

I am still under the Celiac Doctor as I showed a completely positive response to the Gluten free Diet
and also still under the dietician until I start gaining weight ,

I used to be overweight but now I am finding it hard to put any weight back on ,

I have been Gluten free for nearly ten months now but I don't think I did it very well for the first few months even though the big D stopped which was a miracle, I but I was glutening myself accidently on a regular basis,

I found any glutening would cause such horrible reactions within my body I would go very hot and sweaty and nauseous and get a depressing itching pain in my upper stomach and sort of under my arm too
then it would actually affect my thinking ! .....
the only way I can describe it was a feeling of fear despair and panic and I couldn't help thinking I was going to die !...it lasted a couple of hours

It only happened after ingesting gluten but what made it worse is that I didn't realise what it was at the time ,
I thought I was losing my mind but thankfully it passes and gets less and


Does anyone else ever get mind affecting responses like this from getting glutened ?

Also I cannot tolerate casein milk protein and I just wondered can a casein intolerance ever go away like lactose intolerance can ?

Cal

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