To Crystal re coeliac disease

[Guest guest]

Hi Crystal!

First, excuse my British spelling of coeliac disease!

Well, I am so interested to hear that another doctor has made this

possible link. Not sure yet if I have autoimmune pancreatitis rather

than classic hereditary but it might be so. I definitely have

coeliac as well as CP. I was diagnosed coeliac in 1988. I also have

osteopoenia, early osteoporosis. As you say , this is associated

with coeliac disease but I suppose maybe it could be linked with

anything that caused malabsorption as CP itself does?

I am so used to the gluten-free diet that it is second nature to me

now. First, the shops are full nowadays of gluten-free foods. There

is a special section in our biggest supermarkets for these foods.

I'm sure this is even more the case in the US! In addition, in

Britain there is the Coeliac Society. It's worth checking for a

similar organisation for yourself. They publish a booklet every year

listing gluten-free foods of every make! For example, if you look

under " Confectionary " or " Soups " , you will find all the brands of

different foods in that category which are gluten-free and safe for

you. There may be something similar in the US or in your state. They

also publish a magazine twice a year which gives the latest research

into the condition as well as lots of recipes. Now I think of it,

I'm sure they publish on a website too but I've never used it. In

1988 the net was only just starting and I've always just used the

magazine etc. If you were interested and you don't find something

similar at home, I could send you my magazines as they arrive, if

you were happy to e-mail me your address. (I won't be offended if

you don't! In any case, I'm sure you'll find similar things in the

US.)

I am used now to eating rice cakes as my staple. There are lots of

breads as well but I'm always trying to keep my weight down! There

is a whole range of gluten-free pastas, cakes, biscuits, crackers

etc. etc. I now only find it a bit awkward when I go out to eat but

chefs are so much more aware of the disease than they were in 1988!

Most restaurants are happy to tell you which are safe dishes or to

prepare you something plain without the sauce which may contain

gluten.

Potatoes, rice or GF pasta still form the backbone of my main meals

each day. Then I will eat meat or fish, minus sauces (as much to

keep fat content down because of my CP as to avoid gluten) as well

as salad or vegetables. I suppose it's quite plain food. Some

prepared sauces are both low fat and GF and I do use these, I

confess, as a busy woman! There are some excellent curry sauces

which are low fat and GF.

I'm not the most imaginative cook by the way!

I will look up the Coeliac Society website address and post it

tomorrow.

If you do have coeliac (and I hope you don't, of course) there is no

need to worry. You get used to the diet very quickly. By the way, I

don't know if you eat hamburgers? The best of them are, of course,

pure beef and so are safe for coeliacs. Whether or not you can eat

them in view of pancreatic difficulties is another matter. I can,

provided I take my Creon, although they are not favourites with me

anyway!

I'll look out some nice recipes if I can! I tend to eat a rather

boringly repetitive diet, I think!

I personally have to be careful about lactose as well but most

coeliacs are fine with it. I therefore eat very little cheese even

though I love it. I now prefer the very low fat cheese anyway

because of the CP.

Your dietician will give you lots of useful links and healthfood

shops have good books on the subject as well as GF foods.

In Britain, a diagnosed coeliac has the right to certain basic foods

(bread, plain biscuits, pasta, flour etc.) on prescription. This

makes them very much cheaper than buying them in the supermarket.

From next year when I will be 60 (help!!), prescriptions will be

completely free for me. Of course, you can't get anything fancy like

cakes on prescription. I'm not sure what the system would be in the

US.

Did you have calcifications in the pancreas? Looking up the subject

this evening, autoimmune pancreatitis is often described as not

leading to calcifications but I do have them throughout my pancreas,

as well as atrophy etc. Of course, I have only just begun to

research the topic as I only received the news of this possibility

to-day!

Good luck Crystal! I'll do my best to help and we'll keep in touch.

With warm wishes,

Fliss (UK)

[Guest guest]

Fliss,

I did not have calcifications on my pancreas. When I had my pancreas

this was confusing to doctors. However, when it was removed it was

full of fibrosis.

In the US they are not very good with Celiac disease. Some of the

food labeling is ambiguous so you just have to avoid it, just in case.

The dietician told me that they are much better in Canada and Great

Britain. At the supermarket there was only a very small section of

gluten-free foods. Most of the foods in the section were gluten-free

cookies and snacks. I don't want snacks. I want to keep my weight

down. Since I have been injured I have gained quite a bit a weight.

I went up a pant size. I'm still thin, and many people claim it is

ideal. In my mind, it is not ideal. The size I was before my injury

was ideal for me.

Crystal