[Fiz]

I'm due to see the Spine Consultant on 17th because of my worsening symptoms, falls and enuresis so we'll see what is said there.

I'm also likely to have investigations to whether I have sleep apnoea which I'm dreading as I have to go and sleep elsewhere and be observed. I know my weight gain has piled on since my ability to mobilise has dropped because of pain. I need to try and lose some somehow but I have been trying so hard. Once my garden is paid for I thought I might trial Mindful Chef because all their dishes are gluten free, low carb and calorie controlled but it'll be the summer before I can even try it. I'm so fed up with my back it's causing so many other problems that feel insurmountable! 

[KizzyKazaer]

Oh, Fiz, it seems like just one thing after another for you - I do hope whatever the spine consultant finds is treatable.  As for trying to lose weight, seems to be a minefield out there with different 'experts' promoting or decrying this or that diet     Not heard of Mindful Chef before, but no harm in giving them a go if it makes the job easier for you..

[huhn]

about the gluten free meals I have I point against when you do not need them, people with cerelac disease  have to eat much more calories and the food is far to easy to digest and you eat much more then you need.

[Fiz]

If I've understood you correctly you're saying I should avoid eating gluten free if I'm not coeliac? I'm not coeliac but if I eat more than small amounts I get horrendously painful IBS symptoms that can last 3 or 4 days hence avoiding gluten when possible. I've not been eating refined sugar or complex carbs for a long time but due to lack of movement I require very few calories to survive and not gain weight.

My GP is hoping that I will be offered physio which will build up other muscles to lessen the work around my damaged spine and in turn would mean I can do more physically which would help with the weight issue. I'm up for anything. It's an area my GP Is quite knowledgeable about herself so we'll see. I'm hoping for another MRI to see if it shows what is causing the worsening symptoms but my GP doubts he will order another MRI. Too eager to be fixed, me. Instead I need to learn coping skills.

I've been struggling the last few weeks. Too many paramedics know me. When they come in they say "hello Tizzie" and cwtch my dog and they know where all my meds are kept in the kitchen. Yesterday I had a panic attack when I knew a lone male was coming so I phoned back and explained about my PTSD and they switched responders so I saw a male and a student female which is fine. My PTSD with fears of men and triggers is now logged on their system. I was overwhelmed with how understanding both control and the paramedics were about it. We do have an amazing NHS.

[huhn]

Than it is ok, but  who is health is better not to do this diet, it is  so much missing, a other tip is, old types of wheat like emmer is for you no problem, that has much less gluten then the modern sorts and are often without problem for people like you.

[Sunny Clouds]

Doesn't it depend a lot on what sort of gluten-free diet you follow?

Let me explain what I mean by giving just two contrasting examples.

Years ago, I followed a gluten free diet as part of an exclusion diet. I also had various hospital tests and investigations. 
 
Living in a multicultural British city, it was easy for me to buy non-wheat flours such as gram (chickpea), maizemeal, rice flour etc.  I made my own soda bread, chapattis and pastry, usually with a mixture of flours.

On the other hand, if you go to supermarkets these days, you often find a section with a range of ready-made foods for special diets, including gluten free, wheat-free etc.  These products are often very expensive and, just as low-fat foods often have lots of sugar added to make them palatable, so a lot of these gluten free foods are less than ideal.

But that doesn't mean that none of them are worth eating if your local supermarket has a good range so you can be picky. 

So I'm not knocking Huhn's concerns as to what you eat instead, just saying there's a range of options depending on where you live and you may be able to be picky, especially as this isn't coeliac, so you don't have to worry about tiny amounts of gluten and can buy other grains that are gluten free but might have been processed in the same factory as a gluten-bearing grain.

I don't know about Mindful Chef products, but they're a starting point, aren't they?

Meanwhile, thank you for the prompt you didn't know you'd made to me - last year I lost lots of weight and now I'm putting it back on.  Comfort eating carbs is my problem and I need every little prompt and push as I start tackling it again.

Good luck on the diet.

[huhn]

Ok, thats  fine, i have it more difficult, i need to watch out for every cross contamination for my 2 boys.
 i get from hospital gluten free flour , and do from it bread, cake , pasta , pizza. beside we use only rice and some potatoes, otherwise we  have a lot of fruit and veggies and meat. i do also make my own liver pate and sausages. the ready made products are  financially out of reach for me. i found old cooking books more helpful than special for the diet designed ones. in the old ones you get a lot of ideas how to change products and they are more based on  the simple food products and no need of special products.

[Sunny Clouds]

I find it interesting, Huhn, that you commented on modern wheat having more gluten than older wheat.  I use that from time to time as an example of how foods have changed and are still changing, as growers and manufacturers cross-breed.

We can so very easily think that it's only laboratory genetically-modified foods that change, not natural variations and plants naturally cross-bred in the field and then selected for propagation.

It also affects lots of fruit and veg where they select the varieties that can withstand travelling long distances and being on display a long time.

That doesn't mean it's wrong if foods last.  When I was a child, we used to pick the apples in our garden, put them in papier-mache trays and store them in the cellar, where they lasted all winter.

Sorry, I'm telling myself as much as the rest of you.  A reminder to go back to basics and eat healthily. 

So that's another reason to offer hugs.

    

[huhn]

yes you are right, I have a problem with apples, the old sorts are fine but any normal apple  from the super market brings a terrible allergy. I am lucky that I can get fruit from the local farmers, the  fruit what the are  not able to sell and here they keep a lot of the old fruit trees for private consumption

[Fiz]

I saw a much higher up the tree consultant on Friday (OMG he was so dishy I'm never getting better!) and he wants me to have a whole spine MRI from neck to tail. My spine is curved. Over 50% of the people he sees have a slight curvature of the spine but mine is on the severe side of the slight curvatures he sees. It's not possible to know whether the curve was caused by the C5/S1 DDD damage or was the cause of the new symptoms. The curvature might explain why my pain is much greater on my left side and my left side is more affected by disability. The x-ray I had in 2001 diagnosing the DDD didn't show or get noticed as a curvature so my thinking is the DDD has caused it over time since then, damaging nerves.. The MRI should be in about 2 weeks and I'll see the consultant again.

I had to do movements for him until they were too painful and I had to stop. I could barely get to the car afterwards and took morphine and lay down once home until it worked. I'd forgotten the repercussions of doing things!

I have a small card about caudal equina syndrome telling me that if I have any bowel incontinence or daytime incontinence of either kind or numbness or tingling in my saddle area then I need to go immediately to an A&E showing them the card he gave me at A&E reception. I've been stable symptom wise for a couple of of months so I'm not worried but I'm pleased he wants an MRI as symptoms have appeared since 2017 when I had my last one.

[Fiz]

Hi everyone, I was discharged this morning after 23 days in a acute mental health unit and am very glad to be back home and have wifi again. After the first week I went to a lumbar spine MRI pre arranged by the above specialist and then was called back for a thoracic spine MRI yesterday following which due to an area of concern to the Consultant radiographer they injected contrast dye into a vein and repeated the MRI on one thoracic section. All they would tell me is that I should bring my follow up appointment forward to as soon as possible. The earliest appointment he has is 12th of July which is too far away. I have an appointment from the imaging suite for a CT scan tomorrow. It's obviously not something minor so I telephoned my GP who has details of all the MRI scans on her screen and I have a spinal meningeoma tumour. I have already been referred to the neurosurgical team in the city who will discuss the options of surgery, radiation therapy or chemotherapy so by the time they see me they will have my options before me. I feel better knowing than not knowing to be honest. One day at a time. At least I know why my back hurts! And on the plus side, that's another thing to put on DWP forms!

[huhn]

          

[Monic1511]

Hope your feeling better 

[KizzyKazaer]

I must say you're being remarkably positive about all this, Fiz - but see your point entirely about knowing rather than not knowing (or - equally as bad - having pain dismissed by the experts when it doesn't match the items on their tick lists, if you know what I mean).  One of the downsides is, of course, having more tedious but necessary hospital trips, so    that these go as smoothly as possible for you...

[Sunshine Meadows]