Celiac Mindwarp

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.

Mw

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...

For me, the key is the improvement in so many symptoms being completely gluten-free. I have ended up virtually paleo.

I was more or less wheat free for 9 years, but the change from that to gluten-free is almost unbelievable.

There is not much long term evidence about effects of untreated ncgi.

For me, there is no going back to the pain and exhaustion of life pre gluten-free.

Evidence is starting to emerge that ncgi and celiac are on a spectrum. Early days though

Hi Marcus

I don't have DH, but following negative blood tests, biopsy and genetic test I have been declared NCGI. I have been strictly gluten-free since September 12, and clean wholefoods, paleoish,dairy free since. January 13. I have just got better and better, with a host of symptoms clearing, including eczema and random rashes. My skin is much softer too.

Just sayin

Interesting question

I have looked around for the last year, and I keep going back to Gluten Dude, Whole30 (I am grain free except rice), Mark's daily apple and the university of Chicago site (for information).

Good luck

I spent my first few weeks here lurking and saying 'that's me, that's me'.

I had tests and biopsy, but couldn't last on a gluten challenge, and my tests were negative. My gene tests were negative too, and my G I diagnosed Non Celiac Gluten Intolerance NCGI. I ended up on a whole foods diet and uncovered several food intolerances, but I feel better than I have in 20 years.

We all have stories of our gluten-free journeys, and folks here will be happy to help with yours

I'm up for Meatza

 

We were discussing this at home only yesterday. We were thinking what the best bases for pizza are, tortilla, french bread, and we remebered the time that we had decided to have pizza without checking what was in the house, and ended up using large lamb steaks as the base.

 

Definitely some caveman stuff going on here.

 

At least you guys aren't in the UK. We have reduced price dental care, but our teeth are awful!!

Hi Marco

 

Sorry to hear you are having so many problems, and welcome to the board. I hope the folks here can give you some help. It sounds as if your doctor was very unhelpful. Did yiu ask specifically for a test for celiac disease? That should be fairly straightforward to do.

 

You said you stopped gluten yesterday and are having some uncomfortable symptoms - it is worth you knowing that some people get a period of 'gluten withdrawal' when they stop, as their body tries to adjust to the changes. These changes can also affect your moods and emotions, so that would not be especially unusual. Some people describe having lived with 'brain fog', where you can't think straight, and as this lifts, it can feel very strange too.

 

As G F in DC mentioned above, if you want to have testing, which would most likely be a blood test, and possibly a biopsy (where they take a few tiny samples of the inside of the higher up part of your stomach) then you do need to be eating gluten. If not, you can get a test which is negative when really you are positive.

 

Some people here have something doctors call 'Non Celiac Gluten Intolerance' (NCGI), which has many similar sypmtoms, but doesn't show up on celiac tests (as the body is not producing antibodies to 'fight' the gluten in the same way).

 

If you cannot get your doctor to run the tests, you could try the diet for several weeks (3-6 months) and see if you have any good changes.

 

It can be very difficult to go back to eating gluten later on, if you did decide you wanted to be tested, so ideally, get tested first. You might need to try a different doctor, as many of them do not know as much about celiac as they should.

 

Lots of people here have decided just to go ahead and try a gluten-free diet, and found it helps.

 

Do stick around and ask questions here, there is always someone who can help

 

Mindwarp

Sending thoughts and prayers to the families and those affected.

 

I am so sorry another city has had to go through this. I lived in London for many years, and hated the threat of attacks like this. The various attacks there were far too close to home. The London marathon is this weekend. May it be a safe and happy event. Each year, amateur runners raise a huge amount of money for charity at this event.

 

Strength going forward to all of Boston.

 

Mw

Here is a UK organisation

 

Samaritans

 

http://www.samaritans.org/

 

'People talk to us anytime they like, in their own way, and off the record - about whatever’s getting to them.
They do not have to be suicidal.'

 

They operate phone lines 24 hours a day, everyday

• 08457 90 90 90* (UK)
• 1850 60 90 90* (ROI)

(*N.B. this is NOT freephone)

 

You can write to them, email, or visit someone face to face in an office.

I am guessing you got the message, so I won't add to the advice above

Welcome to the board, sorry you need to be here. Hopefully you will find improvements on the gluten-free diet. It does take a while to get your head round it, but there are plenty of folks here who have traveled the road and are happy to help. Look at the 101 pinned thread for starters, and ask lots of questions.

We are here for rants too . Some people get gluten withdrawal, it will pass. Come and talk when your head wants to explode from reading labels...

Good luck
Mw

oooo, I have glittery cobalt blue nail polish here, what a fantastic excuse, I usually save it for music festivals. There sure are some folks need us thinking of them this week, and glittery blue toes would remind me very well.

 

IH sorry it is all a bit ick at the moment, we are all there with you (but not in an inconvienient visitors you could do without sort of way). Get well soon.

 

I had sweet potato and a chicken and veg in tomato sauce type of thing. Fortunately Mr MW has come back with some shopping, so real food tomorrow

And me x

I would want to know if it offers immunity from effects of eating gluten (unlikely) or what they expect the results to be for you. I would be extra wary if there was no follow up testing in the months after to establish if it has 'worked'. Would it be one off or need repeating? Are they early or late stage trials? How many humans have been tested, with what results? Will one group receive a placebo?

Sounds like you need to know a lot more before agreeing.

Would I do it? No chance.

I got my 1st soy fog this week. Pretty similar to a gluten one for me.

I lose the sense of ever being able to achieve anything in the future.

I feel like something is pushing me back on my chest.

I stare blankly at walls. Daytime tv is as much as I can handle. Even that seems taxing sometimes.

I can't file or organise. Bills pile up even if I can afford them.

My good news is that this only happens a couple of days a month, when testing foods for reintroduction and finding a no. Previously I lived months at a time like this. I am taking back my life, and doing things I thought were gone forever.

If I can just convince myself I have to wait it out when it strikes it would be even better.

Diana, glad you have come through.

I might tell my husband I need time in the greenhouse next time