I was massively relieved when my endoscopy came back with just a small hiatus hernia. I had been gluten-free for a while, so didn't really expect a celiac diagnosis. I spent years thinking something terrible might be in there.
Sounds like you have decided to take control now, great choice . I am Non Celiac Gluten Intolerant, and my life has been transformed.
I am NCGI, so it probably doesn't apply to me, but if it did...
It honestly wouldn't be something I would want now. I have a host of other food intolerances, uncovered since I went gluten-free. I now have a healthy, clean diet. I never would have got there if I hadn't been forced to, and if I could pop a pill and then eat all that junk I used to, it would be very hard not to. That is some addictive stuff.
I suspect I have added years to my life, and it is now so much better quality than it was.
Having my own little celebration here. Just got out my map and thread, and I walked 10 and a half miles today. As well as half a day volunteering. And watching The Great Gatsby. (I loved it. And I think I have an idea for a new cabana boy).
Hope you had seconds of that cake. You are just awesome.
I am so sorry to hear you have had such a terrible time with doctors. No one deserves to be treated like that. Sadly, this is a very familiar story. Many of us have been told we are stressed, making it up etc.
It sounds as if you are doing exactly the right things. There is a list around of the FULL list of tests to request.
The fact you had such a positive response to the gluten-free diet speaks volumes, as does your suffering back on. You may be referred for a biopsy, and will need to carry on on gluten for that too.
Your symptoms sound like a good possibility of celiac or non celiac gluten intolerance.
I hate it when people are mean and make assumptions.
But the support I have had here and on another site of a man known for the odd rant, have given me back my life. I will always be grateful to the folks who give so much of their time and knowledge here.
When I started here I remember thinking some people were a bit hard on people who hadn't found their way through the diet. I ended up having to make radical changes to my diet, and I now have a very clean diet, and have my life back. So I understand. I am glad I read their posts. Not everyone will need it, but for anyone not getting rid of symptoms, it could be a lifesaver.
I am not excusing some of the awful rudeness of the last few days. At all.
I hope you find ways to benefit you health, or that of your loved ones. It is what the vast majority of us are here for.
I tested negative too, but the reduction in all sorts of symptoms has been phenomenal. I have ended up paleo plus rice, with several intolerances on top of gluten, including dairy, soy and corn. I had back and neck pain, shoulder, was treated for repetitive strain injury in my hands, plantar faciitis, migraines etc. I had physio twice a week to get out of bed at one point.
I am now walking several miles a day, no physio for months, and considering returning to work full time.
Sorry to hear your GI experiences were bad hope the new one is more helpful, and that you are able to get back to gluten-free soon. I didn't agree with mine on everything,and my endoscopy was rubbish, but I wrote down my history, and my response to the gluten challenge and gluten free, and he used this to diagnosis ncgi. He also took my list of questions and WROTE to me to answer.
(Look, no questions this time! )
Hopefully your jigsaw is coming together. Very good luck
Before I knew I was non celiac gluten intolerant, I was 'mostly' wheat free.
If I ate wheat, maybe just half a piece of toast, the next day I would have 2 slices. Within a week I would be eating cakes and pastries every day. It would stop after about 3 weeks, when I would be very violently sick.
I am not proud of this.
It happened about every 18 months.
While I was going through diagnosis, my husband said he thought something must be medically wrong, as he had never known me not do something I wanted to.
When I got diagnosed and went totally gluten free, the cravings went.
When I get glutened now, I eat like it is going out of fashion, and feel starving for 2 days. I stay gluten free, and it passes.
I see now that when I was eating all that 'healthy' rye and getting cross contaminated, I never gave myself a chance to get better, so the occasional binges happened.
I feel better physically now I have quit the gluten, but I also feel better about myself now I have control.
If you make it this far OP, I hope you can pick out some useful information from everything here, and give yourself the gluten-free future you deserve.
Sweet potato, scrambled eggs, mushrooms and parma ham.
Odd day, I think I got dairied for the first time, my black decaf tea looked a bit cloudy. I had massive cravings and spent the day eating, and had to do the school run through a migraine fog (walking). I think the teachers thought I had been on the gin at lunchtime...