Coeliac diagnosis is a B***h: My recovery

As many of you know I have recently finished a Gluten Challenge.

Having lived gluten free since Christmas my doctor wanted to test me for Coeliac Disease - why? Find out here and here.

As I've mentioned before I have found the online support for gluten sufferers overwhelming - one of the most inspiring things I read was Joy's post about her recovery over on The Liberated Kitchen.

Having read her post I decided I would do a similar thing over here on The Steel Plate, logging and tracking my symptoms as they *hopefully* improve over the coming weeks and months.

I'll start my summarising the symptoms I have had over the last two weeks...

[DISCLAIMER: If you are squeamish about bodily functions you may wish not to read on.]

• 3-4 migraines per week lasting between 1-4 hours at a time
• severe fatigue (falling asleep at midday for 2/3 hours)
• constipation (going to the loo once a week if I was lucky)
• brain fog / stuttering (probably the most annoying symptom)
• severe pain in my legs, hips and wrists - this symptom was by far the worst, sometimes making it impossible to write/sleep/shower/walk
• anxiety  

As I mentioned previously, my doctor is unconvinced that all my symptoms are gluten-related but they did only occur when I re-introduced gluten to my diet. Thus, I have been tested for a range of things including Thyroid disease, various vitamin deficiencies and Type 1 diabetes.  

I had my blood test this morning at 10am and haven't eaten gluten since 14.00pm yesterday. Almost 24hours on an I can already feel a slight improvement - especially in my joints. You will have noticed a slight hiatus in my blogging - the main reason being typing became very painful. Yet, here I am typing away happily.

Over the next few weeks I am going to set myself small challenges to a) improve my health and b) strengthen my body. I'll log how things go here in the hope that it might help somebody in the future.

I'll be following the guidance below to aid a quick recovery:

• Drink at least 2 litres of water a day.
• Eat at least 3 vegetables and 2 fruits every day.
• Sleep 8 hours a night (and no more).
• Walk the dog every night (something I have missed doing so much).
• Avoid all gluten products.
• Avoid FODMAPs at lunch and breakfast in order to reduce my intake.
• Get out into the city and try as much gluten-free food as I can! 

Thanks again for your support and advice :)

20/7/15  - An Update

It's been just over two weeks since by blood test so I thought it was time for an update.

Firstly my results: My Coeliac screening has come back negative (for a second time) which was not a surprise. Since being back on a GF diet, however, my stomach cramps have subsided and my stomach looks 'flat' again (I wish). The other symptoms, however, of fatigue and joint pain have got progressively worse. Day-to-day tasks are exhausting and at times simply getting comfy enough to nap is a challenge. The blood test did show that my Vitamin B12 is very low which could be responsible for these symptoms. I see my doctor tomorrow and hope to get some answers. I'll feedback when I know more.

I'd like to re-visit my guidelines above to see how well I have stuck to them:

• Drink at least 2 litres of water a day. - I have been doing very well with this - I bought a Brita Fill&Go Water Bottle which I have found really handy.
• Eat at least 3 vegetables and 2 fruits every day. - Veg has been my champion over the last few weeks, I need to do better with fruit.
• Sleep 8 hours a night (and no more). - This has been impossible. I am sleeping 9-10 hours and napping around 3pm. This is something I have no control over currently and is something I need to speak to my doctor about.
• Walk the dog every night (something I have missed doing so much). - I have managed this 3/4 times a week. Light activity is difficult but manageable and I intend to keep it up.
• Avoid all gluten products. - 100%
• Avoid FODMAPs at lunch and breakfast in order to reduce my intake.  - Haven't stuck with this as much as I wanted to - it's such a tough diet!
• Get out into the city and try as much gluten-free food as I can!  - I've just started to feel like I can do this again - see my recent review of The Milestone for a delicious recommendation. 

Love to my readers that are suffering similar challenges at the moment - keep your chin up and focus on your health. Priortise you. 

Coeliac diagnosis is a B**CH: Part 2

*Sigh*

Took another trip to my doctors this morning.

The five minute walk to the surgery was exhausting and was followed by a 90 minute wait (despite having booked the appointment earlier this morning.

I explained what the gluten challenge was doing to my body...the aching joints, the stomach cramps, the dizziness etc. and he told me didn't think they were all related to gluten.

I'm not one to second-guess a doctor as I respect them as professionals but when I've shared my story with others who have experienced the same things, due to gluten, it feels frustrating.

He says it is vital I continue with the challenge and get a blood test so that I can be referred to a specialist for a biopsy.

He has signed me off from work until after the blood test and has told me that I can come off the GF diet as soon as the blood test is done.

3rd July people, 3rd July.

I understand that these things take time but I am just so frustrated. The idea of putting my body through hell again for another 10 days makes me want to cry / scream / shout. I take good care of myself and enjoy putting nutritious food into my body...filling it with a protein that essentially attacks my intestines is not really my thing.

If any readers / Tweeters / IGers have any stories to share please link me up below...I have a whole lot of time on my hands...

Coeliac diagnosis is a B**CH

Coeliac UK, a charity that supports people with coeliac disease, stress the importance of continuing to eat gluten until you have a diagnosis, they also highlight some of the dangers of self-diagnosis.

I did not self diagnosis. Just before Christmas I was told by my GP to start a Low FODMAP diet - a highly restrictive diet aimed a treating chronic IBS, one of the (many) things you remove from your diet being wheat and all wheat based products.

The Low FODMAP diet worked wonders for me - my symptoms either faded or reduced considerably. It is not, however, a diet that you are supposed to maintain forever. Instead, after a 2 month detox you gradually re-introduce different foods and record how much of them your body can manage. Six months later I had managed to reintroduce all foods into my diet (expect Beetroot - oddly) and only had wheat to go. 

A bowl of weetabix and a couple of digestives later and the pain began to flood back...and here I am. My doctor wants to re-test for coeliac disease (despite a negative blood test before Christmas) and has put me on a gluten challenge for three weeks. 

My symptoms include: stomach cramps, chronic fatigue, a cold foggy feeling in my head, pain in legs, arms and joints and even my anxiety as started to raise it's ugly little head again. I'm unable to work, which is making me miserable, and feel like I have been given very little support with managing the symptoms.

Coeliac UK describes doing a gluten challenge as being "difficult and uncomfortable" (ahem) but gives no real advice on how to manage the symptoms. Instead, I have turned to the online community for support and advice. I have collated all my finds together and have put them here in the hope that they might help somebody who is going through the same struggle...

Distance: Don't distance yourself from family and friends. This can be a really difficult experience so surround yourself with supportive and caring people, talk to them and let them help you. 

Diet: When doing a food challenge it is easy to focus solely on that one food - I did this for the first 3 days and it made me feel terrible. It's important to maintain a vitamin-heavy diet with lots of fresh fruit, vegetables and (for meat eaters) meat. 

Do something: When your whole body aches it is easy to set up camp on the sofa and refuse to leave the house. After three days I was advised by a lovely Instagram follower that she found light exercise helped with the pain in her legs. I have committed to taking my dog for a short walk each day and it really is making a difference both physically and mentally. 

Direction: Set yourself a different challenge. Especially those of you that are off work due to the symptoms. You need something to give your days some meaning so that your hours aren't consumed by the pain. Personally, I'm doing some work for my new job that I start in September. I only manage a small amount each day but it means I am thinking ahead and remaining positive. You might decide to plan a weekend away for when you're feeling better, you might attempt to read a series of books or you simply might attempt to binge on Netflix (OITNB anyone?). Whatever it is giving yourself small challenges will help keep you focused and positive.  

Devour: Finally, the best bit. This, despite being one of he most painful periods of my life, may be the last time I can ever eat gluten. In an effort to boost my spirits I made a list of gluten containing foods that I will eat one last time before my blood test: digestives biscuits, Krispy Kreme doughnuts, Cornish pasty, a Steak and Ale pie...the list goes on. 

**An update**

Having drafted this post earlier I feel I must amend it before posting. Gluten, it seems, has beaten me. After only five full days eating gluten my body and mind can take no more. Last night, my symptoms were so severe that they scared me - this cannot be the right thing for my body.

This is not to suggest I am anti-gluten challenge / coeliac diagnosis, if I could, I would continue with this and get my answers. But for now, it is simply too much. This is a personal choice, after much deliberation, and I would not want it to have an effect on anybody else.

I am seeing my doctor tomorrow to update him on my symptoms and my decision. I'm hoping he will be supportive as I simply cannot put my body through anymore pain.

On a brighter note, I have certainly learned something from my experience: I now know that a gluten-free diet is the right choice for me. I am committed to ensuring my diet is balanced and healthy. And I will never again stare longingly at a slice of Victoria Sponge!!

Thank you so much to everyone who has offered support either through email / Instagram / Twitter - I'm looking forward to sharing my next steps into Gluten Free living with you.