James Miller - Coeliac Diary

 

Thursday, July 31, 2003

More on Beer

 

Of all the things I will miss, beer is the most important.

I spent my first drinking years in Felixstowe and it was there that I really got a taste for real beer. Then it was Tolly or Cobbold and a little bit of Adnams. Now both Tolly and Cobbold have gone as brewers, Adnams are world-renowned and there is also the real ale giant Greene King in Bury St. Edmunds.

Read most of the coealic sites and they all say stay off beer as it made from barley which contains gluten.

So I asked CAMRA!

If you don't know the organisation, they are the Campaign for Real Ale, who as well as campaigning for good real beer, they also try and preserve the best of the pubs in the UK.

I got this informative reply from Ian Loe :-

"There are currently very few beers which are gluten free.

Basically you need a beer brewed with Sorghum (rather than malted barley) to ensure absence of gluten.

Nigerian Guinness is such a drink and can be found occasionally in the UK. We even have some at our Great British Beer Festival next week at London Olympia.

There is a gluten free beer being brewed by Heineken in Italy called Bi-Aglut sold via Farmacia shops in Italy and Free Aglut Beer sold via the Auchan supermarket chain.

A beer from the Ugandan Nile Breweries is also made from sorghum but I have no indication whether this will be made available in the UK. The Nile Breweries is owned by South African Breweries.

Sorry I can't be of more help.

It is to be hoped that a few UK brewers will take up the challenge to brew gluten free beer - for there is a demand."

So I'm not looking forward to drinking lots of beer!

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Looking for Books

 

I went to London and spent a bit of time looking in Waterstones for suitable books that might help.

Not very inspiring unless you want to do 'Gourmet' stuff!

Cook! Moi!

I also visited my GP and asked her whether I should continue with the diet and perhaps stop the B12 injections.

She thought I should!

Wednesday, July 30, 2003

Beer

 

I finally got around to sorting out the lack of beer.

Surprisingly Nigerian Guinness seems to be absolutely gluten-free as it made from sorghum. Also, one of my Danish friends lives with a coeliac sufferer, who says it is alright to drink Carlsberg and Tuborg!

I also checked out about my other staple alcohol, whisky, that is sometimes labeled as dangerous for coeliacs.

We went to a new Spanish restaurant at the Chestnut Tree in West Wratting this evening.

We talked to the chef and he just made one sauce with cornflour rather than flour. A very nice meal, except for the tempting bread on the table!

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More on Chocolate

 

I've never been someone who bothered too much about chocolate. Although I would have the odd bar of Dairy Milk or Bournville at times.

Strangely though, I've always been partial to Crunchies. And guess what they're gluten-free! I've never been struck on KitKats either! Because of the biscuit they aren't!

What seems to be the case with Cadburys is that anything made at the old Fry's factory near Bristol is gluten-free. But product made in Birmingham is not.

Other chocolate companies are not so open with their dietary information.

So I don't eat anything that I don't know what's in it!

Except of course for Green and Blacks! Most of their product except for things with caramel flavourings is gluten-free. It's all on their web site!

Update February 2005

When I originally wrote this page, I couldn't find any information on Nestle products. They now have a full list on their web site. I still can't find any reasonable information about Mars.

Update May 13, 2005

Green and Blacks have now been taken over by Cadbury. Some may not like this, but speaking as a coeliac, I think that Green and Blacks gluten-free standards will be maintained, as Cadbury is serious about dietary information.

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Tuesday, July 29, 2003

Cadburys and Chocolate

 

Played Real Tennis again and as I often do, I popped into an Asian supermarket to get a Coke. Normally, I would often have a sandwich (definitely out now!) or small bar of Dairy Milk with it for my lunch. I now wondered if the latter was acceptable.

I looked up the Cadburys web site and got a real surprise!

They have a 'Nutri-Wizard' that tells you which of their products are colour, egg, milk and gluten free. It also tells you whether they are Halal or Kosher.

A real 10 out of 10!

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Real Tennis

 

I play Real Tennis at Cambridge and this morning I had a good game with Donald Tipper. We also had a good chat about my problems and whether I actually have coeliac disease. Note that Donald is a serious scientist who knows about the mechanisms of the body.

As I am now feeling better without the gluten, I feel I have probably made the right decision.

I also requested a 'gluten-free' list at Waitrose in Cambridge.

I did get a prompt return to an E-Mail to Kellogg listing which of their products were 'gluten-free'.

"Choco Corn Flakes, Coco Pops, Corn Flakes, Crispix, Crunchy Nut Corn Flakes, Crunchy Nut Red, Frosties, Rice Krispies, Ricicles, Rice Krispie Squares, Cereal and Milk Bars, Winders

These products are free from wheat gluten, but will contain traces of hordein (barley protein) from the malt flavouring/extract ingredient."

That sounds fine by me! I didn't know that they made so many!

What are Winders?

Monday, July 28, 2003

Thoughts on the First Week

 

So the first few days on a reasonably 'gluten-free' diet have been completed.

Has it been difficult? Not really!

Any benefits? Possibly! But nothing definite yet!

Buffets and Tesco

 

The christening went well and my fears of nothing to eat were unfounded, as although it was a buffet, there was salmon, ham and several nibbles that were all gluten-free.

We did visit Tesco and see if we could find any bread or biscuits that might be acceptable. All I got was a packet of rice crackers! Rice crackers are truly awful and are like eating cardboard with slightly more flavour.

Alright I suppose, if you want to lose a lot of weight! I don't!

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Sunday, July 27, 2003

The Christening and Marwell Zoo

 

Imogene, our grand-daughter, is being christened tomorrow, so we drive with the dogs, Rosein and Mary, down to Chichester. As ever the journey is a nightmare, the major holdup being a crash on the M3. The weather was atrocious!

That evening we stayed at Marwell Zoo!

Sounds daft but the hotel was very good value. The evening meal too was much better than could have been expected and not the usual processed pap you get in most hotels of that type.

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Saturday, July 26, 2003

First Day

 

I spent the day at home, having a couple of Scotch eggs with some beetroot for lunch and some kebabs from Marks and Spencer for supper.

No real problems, except that I do miss the odd biscuit snack!

At least a little bit of searching on the Internet shows that wine is OK. So at least I can get drunk!

Update - October 17, 2006

Reading this again, I see how naive I was. Scotch eggs have breadcrumbs in the coating and are not gluten-free.

Friday, July 25, 2003

Telling Celia

 

I told Celia, my wife, when she returned that evening and as one of her friends is a serious coeliac, I don't think she was too pleased!

That evening we went to the Star at Lidgate, a pub recognised for its good Spanish food. As I don't have puddings, the only change I made was to avoid the bread at the start. But as I'm putting on a bit of weight, it probably wasn't a bad idea!

The asparagus and the lamb with blackcurrant, that I ate was very good.

The Letter

 

I got the letter from Addenbrooke's today.

It said :-

"The blood tests suggest that you are malabsorbing Vitamin B12 and that you have coeliac disease."

Just like that!

Not much further explanation, although he did say I should continue with the injections. No suggestion I ring or visit my GP!

I do know about coeliac disease having met several in the last few years and also a friend of ours had a son that way in the 1970's.

It really is a gluten intolerance, where gluten irritates the small intestine and causes it to not work properly. As gluten is found mainly in wheat, barley and some other cereals, you just avoid them. This means basically no bread, cakes, biscuits, puddings, pasta and beer!

Cakes, biscuits and puddings are not that important to me, I like pasta, but beer and bread will be the difficult ones.

In many cases the Internet is a good resource for this type of problem. Type 'coeliac disease' into Google and you get a lot of results, mostly from the States and a lot of them commercial and fear-inducing.

The Coeliac UK site is a rather flash site with music, which always puts me off. Too many sites like this are all 'Style and no Substance'. Their site is not, but to join and get the information I want you have to be a registered sufferer!

The latter just annoyed me!

I've definitely got something wrong as I don't absorb B12. But then I always claim I'm a scientist and engineer, who likes to do research, so why don't I just work it all out for myself!

First research showed that at least wine, provided it was from grapes, was OK, so at least I wouldn't have to become tee-total!

First Appointment

 

The appointment was very far from the stereotype of a typical visit to the NHS!

I had prepared for it though, taking an unread copy of New Scientist (Always take intelligent reading when you visit a doctor, so they don't think you're a moron!) and the day's Guardian, which headlined how if you go to Guinea on business, you can end up in Guantanamo Bay, with little chance of release!

I walked in to the hospital and the first surprise was that I was approached by an elderly man was a happy face and a badge, who asked where I was going and could he help. He then showed me to the clinic. 'Meeters and Greeters' - What Next?

Next turned out to be an appointment with the consultant (A professor actually!) that was only fifteen minutes late and took a full half hour. The questioning and examination was very thorough and except for no electro-cardiogram, was as extensive of many that I've had for a pilot's licence.

The consultant prescribed a few blood tests and a chest X-ray for now and a stomach ultrasound for later. He said that he'd write when he had the details of the tests.

The consultant had said that if I booked in at X-ray, I could then go and have the blood tests.

What? Parallel processing in the NHS? Never! But it certainly looks like it!

Now in common with most people (And especially men!), I don't like blood tests. I was to provide six samples! I'd waited about a minute for the blood tests, when I was called by a nurse. Oh! dear, that was a bit quick! Couldn't I have composed myself better?

I tried the usual routine of chatting about all and nothing, whilst reading the Fire Instructions on the wall. I felt a prick and before I'd got to the first real paragraph after the introduction, the nurse had said I could go.

Where was the pain? Nowhere! But there were six full syringes on the side, with what looked like blood in them. Perhaps it was mine!

The chest X-ray was routine and quick, too!

A point here, is that the radiographer said that the lungs of the average couch-potato are a third the size of someone who is fit! A good reason if ever one is needed to exercise!

So I left Addenbrooke's about an hour after I first walked in. Not very stereotypical!

Tip - Parking at Addenbrooke's Hospital

This is virtually non-existent. If like me you don't have a problem with walking and exercise, then park at the Babraham Road Park and Ride and the hospital is a ten minute walk.

Preamble

 

This diary was started because on July 24, 2003, I received a letter from Addenbrooke's Hospital saying that I might have coeliac disease. (Celiac in the US!)

Perhaps, I'll start with a bit of background.

About five or six years ago at a routine blood test, it was found that I had low levels of vitamin B12. This is in fact quite common and makes you feel a bit run down, lacking in energy and sort of depressed. Nothing that serious but annoying none the less.

After feeling a lot better by eating 'B12-rich' foods such as liver, I finally decided in January 2003 to start having injections of the vitamin. It was something I hadn't wanted to do, as it was almost accepting defeat that I was ill!

Since the first injection, I have felt a lot better, but my GP and I decided we ought to get to the bottom of what was causing the problem.

So an appointment was made to see a consultant at Addenbrooke's in Cambridge, which is the nearest big hospital to where I live. It is also one of the best in the UK, with Mary Archer (Yes! The 'fragrant' one! Jeffrey's wife!) as Chairman! (She is not a 'Chair' or 'Chairwoman'!)

Question - Why is the hospital called Addenbrooke's?

The hospital website explains the history on its web site.

"Addenbrooke's was one of the first provincial, voluntary hospitals in Britain and as such has a long and important history. It opened in 1766 in Trumpington Street, Cambridge. Dr John Addenbrooke left just over £4500 in his will "to hire and fit up, purchase or erect a small, physical hospital in the town of Cambridge for poor people"."