Juliette

Hi everyone,

Ok, so here is my dilemma. I would really appreciate any advice you can give me.

I have been gluten free for three and a half months after having an extremely positive blood test for Celiac.

I recently met with a gastroenterologist who suggested I have an Upper Endoscopy to confirm the diagnosis and see if there is anything else going on (My health has only improved slightly since giving up gluten)

I was told I would have to eat a small piece of gluten for two weeks prior to the test. I was really reluctant to do this, because I've spent the last three months trying to avoid it entirely. So I decided to try a small amount of gluten and if I had any bad reaction at all, to tell my doctor that I was simply refusing to do it.

I ate gluten yesterday and the day before and nothing has happened.

So my dilemma is, do I eat the gluten for two weeks or not?

I live in England, and am therefore receiving my health care on the NHS. If I don't eat the gluten, and don't have the Upper Endoscopy, I cannot be officially diagnosed as a Celiac on the medical system, and therefore, cannot receive check-ups and further tests etc.

But if I do eat the gluten, I may be silently damaging my body, and could make myself worse than I was three months ago when I gave it up.

Does anyone know if there's any possibility of the Celiac blood-test providing a false positive? And also, does anyone know if it's possible to have no symptoms but still be damaging your body?

So my question is really...what would you do?

Any help would be appreciated! Very confused!

Hello everyone,

I've been gluten-free for 3 and a half months now. My stomach symptoms have improved slightly, but what really concerns me, and what I find it difficult to not feel overwhelmed by, is my physical symptoms such as weakness in my legs, faitgue, tingling and itchy skin, flu-like symptoms and a sudden feeling of instability and dizziness.

Does anyone else experience these and did they improve over time? I have been tested for vitamin deficiencies and they've all come back fine. I am not eating dairy, and am experimenting with excluding nightshades from my diet at the moment.

My first blood test was extremely positive for Coeliac, over 100, and I had a second blood test that said my anti-bodies had gone down to 20. Does this mean I'm slowly improving, or does it mean a small amount of gluten is still in my diet?

After this long of being gluten-free, and struggling with my symptoms, I have finally been booked in for a Upper Endoscopy, but obviously they want me to eat gluten prior to it. I just can't bear the idea of doing that to my body, and the doctors (who keep telling me different things) don't seem to understand how difficult it is. I thought I would try to eat some, and if it goes badly, then just give up and not have the test. What do you think? Is it worth going through the pain, and potentially setting myself back three months, just for a definite answer.

I have my University Graduation next week and I'm just scared I'm going to feel weak or dizzy or generally unwell. I get really frustrated and angry sometimes that things that should be enjoyable/easy for me, are so challenging and I have to use all my energy just to get through them.

Anyway, thanks for listening. I just wanted to talk to people who understand. One doctor told me my symptoms are normal and would just take time to heal, another told me I might have an underlying problem such a stomach virus, and a dietian told me my symptoms didn't sound like Coeliac at all. Needless to say, I am confused and frustrated!!

Thank you so much for the advice everyone.

I will definitely look into increasing my protein intake, and I will try and find a way of keeping my diet varied and interesting without over-complicating it with processed foods.

It's amazing how many times I've said 'I just want to be better.'

I thought, at the beginning, it would just happen. I guess I'm just disappointed that it hasn't worked out that way.

Thank you for your advice. I appreciate any help I can get, and it's good to know that what I'm experiencing is not unusual, even if it is horrible.

I'm sorry to hear that it took you five months until you felt better...I hope you will be at full health soon

Hi everyone,

I'm feeling really down about everything today. I guess I just need to talk to people who actually understand. I'm sorry if it seems like I'm ranting.

I'm six weeks gluten-free. At the moment, I'm only eating

Plain fruit

Plain vegetables

Rice

Potato

Nuts

And my stomach is still bad. I still feel unwell, and although some of my physical symptoms have gone down (shaking hands, headaches)my digestion is worse than it was before I started the diet. How is that possible?

I have been taking vitamin supplements (Iron, Calcium, Vit C etc) but now I've stopped to see if it helps my stomach calm down a bit. I've been off dairy for about two weeks now, even though I never saw it having any negative impact before. I'm so frustrated that I don't know what is helping my body, and what's hurting it, and I'm worried that I'm never going to be able to eat anything with any variety, or flavour, again.

I have an appointment with a specialist, but it's not until July. And at the moment, I feel so fed up and frustrated about not knowing anything.

I'm sorry for ranting, I just feel so lost. I've had to postpone my finals because I was too ill to attend, and I wanted to be able to go to my end of year prom but now I'm scared I won't be able to.

Did anyone else suddenly find it difficult to digest processed or complicated foods after starting the gluten-free diet, and did the difficulty go away or improve over time?

Hi everyone,

I'm from England. I've been reading posts on this forum for a while now and it seems to be the best one I can find for advice and support so today I thought I'd join.

I'm twenty-one years old and I've been gluten-free for five weeks now. I had two slip-ups in the first two weeks but since then I have not had the symptoms which I relate to ingesting gluten- my body feels suddenly weak and shaky, my stomach quickly becomes very unsettled about half an hour-hour of eating it. I am very careful with utensils etc..

However, things are not going so well. In the last two weeks I've developed diarrhoea, specifically in the mornings, and over the past week my stools have been green (sorry for the detail but it's starting to worry me!) I know green stools mean that food is passing through the body too quickly and my doctor told me that until my intestines heal, that will often be the case. But what I was wondering was why the diarrhoea has developed while on the gluten-free diet, because I never had it before and my intestines have been damaged for longer than the last two weeks. It's confusing me.

I take iron and calcium supplements, have cut out dairy and am eating only natural foods at the moment: vegetables, fruit, rice, potato, meat and fish. I think what's most frustrating is that I'm eating better than I have in my whole life, and I feel worse. I know there could be other things I'm allergic too, but my doctor says that because it's so early on, my symptoms are normal or at least, not unexpected. I get other symptoms, such a shaking hands, tiredness, shivers, weakness, headaches, but I hope these will improve as I get further in on the diet. My doctor prescribed me antispasmodics but they don't seem to help.

I'm sorry for having a bit of a rant, but I'm feeling really frustrated by it all. I have my final exams for university in a week and I know the stress is just making it worse.

I was just wondering if anyone else has had a similar experience? Is getting worse before you get better a common experience?

Any advice or stories about your experiences would be so grateful!

Thank you!