I was diagnosed with CD when I was 70 - no symptoms until I fell down the stairs! Then found to have severe osteoporosis and now diagnosed

[MaryDB]

with myositis - inflammation of muscles. I am taking 3 steroid tablets a day for this. Doctor says autoimmune condition related to coeliac. Has anyone else had this?

[Lynxcat]

Hello Mary, At one time even I thought that coeliac disease was something that was found only in the young. Initially, I thought I had a problem with wheat - I stopped eating it and felt so much better. A few years went by and in my late fifties I confided with my doctor that I no longer ate wheat as it caused me problems. He tested me - I thought the test was for wheat allergy but he did a wide spectrum and came back with the fact that I had coeliac disease. I was very lucky as it registered despite the fact that I had excluded wheat from my diet. Since that time, very slowly .. I have been learning about coeliac disease and all that it embraces.

It seems that it is now finally being recognised that more coeliacs are being diagnosed much later in life and many of those do not have typical coeliac symptoms, in fact just like yourself, many have no symptoms at all - no evidence of coeliac disease in their families - no explanation as to why they have developed the disease.

There was a study carried out by a group of Israeli doctors on a group of elderly patients some of which had osteoporosis ..... the researchers said, in most of their elderly patients, the gluten-free diet led to “complete resolution of symptoms." This is recorded on:

celiacdisease.about.com/

Regarding the myositis, I am a lay person so not qualified, but I believe that in coeliacs this can occur due to malabsorbtion of vitamin E.

So I would suggest to try and make sure that you exclude every possible ingestion of gluten - it sometimes takes a very long time to realise how many things do contain gluten and therefore delay full repair. I am not sure how long ago you were diagnosed and whether you have had any help regarding your diet.

Best wishes.

[MaryDB]

Thanks Lynxcat.

Diagnosed nearly two years ago and think I am gluten free. Only my husband and I at home and he is scrupulously careful (thank goodness!) and we don't eat out. I regularly see the hospital dietitician (who seems to be much better versed on what diabetics shouldn't eat!) I will be even more careful in reading labels. Interesting about the vitamin E. I understand that coeliac symptoms can start after an accident, pregnancy, divorce etc. so assume the fall downstairs, consequent trip to A & E and use of a walking frame for 4 or 5 weeks triggered the symptoms!

I assume I I have always been coeliac but if symptoms had never become apparent would the damage have still taken place?

[Lynxcat in reply to MaryDB]

Hi again Mary, You have certainly joined an ever increasing club with regard to the amount of people now being diagnosed after the age of 50. Scroll down to recent years on this link which describes how The Duchess of Kent now has Coeliac Disease:

en.wikipedia.org/wiki/Katha...

The one thing that surprised me, which has taken me quite a long while to sink in are the amount of every day food items that contain gluten. I remember thinkiing that cereals like Rice Krispies and Cornflakes were fine to eat only to be advised that they were, in fact, malted cereals and so should be avoided. There appears to be mixed knowledge when it comes to a safe diet for coeliacs. What is alarming are the sources which declare lists of food items safe for coeliacs when they aren't and therefore this forum is such a great place to find out these things.

You probably already know that in the current guidelines, manufacturers are allowed to include things like Codex wheat starch, etc into 'gluten free' items as long as they do not exceed 20ppm (in Australia they are much stricter with an allowance of only 5ppm). So it depends upon your point of view - some of us feel that 20ppm is too much and tend to avoid foods that probably contain that much whilst others feel that this amount doesn't impact upon their health. I must admit that when I found that the law allowed Codex wheat starch to be added to food manufactured for coeliacs I was more than a little surprised and I certainly avoid it.

I'm not sure how I came about getting CD .. I don't suppose I will ever find out!

My latest quest has been to try and find a nice gluten free lipstick - I have got ones that taste of peppermint from the Green People and so far have proved to be quite nice and one from elsewhere that looked promising but broke in the end of the tube after just a couple of uses. Still really looking hoping to find a nice red - pink one ...

[Lynxcat in reply to Lynxcat]

Apologies Mary ---------- for some reason the link will not transfer onto the post for The Duchess of Kent, so if you would like to read it you will need to go into Wikipedia and type her name. Once again, sorry for this.

[jan44 in reply to Lynxcat]

Hi Lynxcat

Just reading your comments on lipstick. Do all lipsticks have gluten in I had no idea, what does it register under on the contents list?

Thanks

Jan

[Lynxcat in reply to jan44]

Hi Jan, Yes nearly all lipstick has wheat starch in - it rarely is listed and the only way I have been able to find out is to approach individual companies and ask them whether their lipsticks are gluten free.

To be quite honest, I only found out a couple of months back when I was reading about how many coeliacs never feel up-to-par regarding their health as they use lipstick, toothpaste and mascara containing wheat. Wheat is in nearly everything - shampoo, soap, creams, foundations, face powders, lipsticks, lip gloss, eye shadow ... but gluten apparently has large molecules and so it is thought not to pass through the skin. It can however enter if it is on the lips or in the case of mascara through the eyes.

I asked Marks & Spencer's the other day whether it was in their make-up and was advised to write to head office requesting that they begin a range of gluten free make-up.

Most of the websites that advise about gluten free make-up are US based with makes that are not available over here.

So, I have tried the Green People - I wrote to them first and was told that their lipsticks and toothpaste are gluten free .. I believe that it is just their soaps that contain wheat starch.

Hope that is a little help to you ... if you find any others that are gluten free please let us all know.

All the best, Lynne

[jan44 in reply to Lynxcat]

Hi lynxcat

Just been looking through ingredients lists for lipsticks this one is from boots No7 Poppy KIng range:

Octyldodecanol, Polybutene, Pentaerythrityl tetraisostearate, Diisostearyl malate, Polyethylene, Microcrystalline wax (Cera microcristallina), Ethylhexyl methoxycinnamate, Paraffin, Caprylic/capric triglyceride, Mica, Ethylhexyl salicylate, Ozokerite, Stearalkonium bentonite, Propylene carbonate, Argania spinosa kernel oil, Irvingia gabonensis kernel butter, Hydrogenated coco-glycerides, Pentaerythrityl tetra-di-t-butyl hydroxyhydrocinnamate, BHT, Tocopheryl acetate, [+/- (May contain) CI 77891 (Titanium dioxide), CI 77491 (Iron oxides), CI 77492 (Iron oxides), CI 77499 (Iron oxides), CI 75470 (Carmine), CI 15850 (Red 6), CI 15850 (Red 7), CI 15850 (Red 7 lake), CI 45410 (Red 28), CI 73360 (Red 30), CI 42090 (Blue 1 lake),

CI 19140 (Yellow 5 lake), CI 15985 (Yellow 6 lake)]

Horrendously chemically loaded but I don't see gluten or wheat starch mentioned do they have other hidden names?

Thanks

Jan

[Lynxcat in reply to jan44]

Hi Jan, There is an international list that all companies manufacturing cosmetics should abide by - on the other hand sometimes bottles, jars and tubes sometimes do not follow these guidelines and it really is a mine field.

It doesn't look as though your lipstick has gluten but then you would need to look at all variants of wheat, barley and rye variants plus the cross-grains to be absolutely sure.

Here is the list for you to go through - each INCI category opens onto a separate page with every chemical itemised:

makingcosmetics.com/INCI-63...

There is a previous link here on GFG that will also be of interest to you:

glutenfreeguerrillas.health...

Cheers,

Lynne

[jan44 in reply to Lynxcat]

Hi Lynxcat

Thanks for your comprehensive reply about make-up. Another thing to add to the avoiding gluten and wheat starch list. It's never ending.

Mary DB - sorry to hijack your question asking about makeup, it frustrates me that gluten is in so many things. I hope the steroids your doctor has prescribed are helping you to feel better.

Jan

[Angelbelle]

Mlary My story is very similar to yours. I too fell down a flight of stairs in the middle of the night and broke my collarbone and several ribs.Had suspected punctured lung too. I have been told I have osteoporosis. Like you I feel I have had a gluten problem for years but a blood test did not confirm this. My Doctor says I must eat gluten for 6 weeks prior to another test. No way, couldn't stand that. I'll just do my own thing, being careful not to eat any gluten which is easier said than done.