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I was diagnosed with celiac disease in 1963 confirmed by a biopsy at the age of 2 I'm nearly 57 and had a colonoscphy done a few years bk and was told I don't have celiac I have diverticulitis I have so many problems wich usually link to celiac disease
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FA54321 JackieMax
Posted
JackieMax FA54321
Posted
Thanks for your reply I've always been puzzled by this I grew up on a strick gluten free diet at the age of 14 my gp told my mum to start giving me half a slice of toast to c how I got on it seemed to go ok so I started to eat other foods with gluten in so was allowed to carry on still with very loose bowels I just don't understand how a biopsy proved I had celiac disease and in later years be told there was no disease if that's the case most of my childhood deprived through following a stricked diet I now have a under active thyroid arthritis in my knee I suffer from anxiety and depression sorry my wordings not good not good at explaining things
FA54321 JackieMax
Posted
To be honest, I think some doctors don't know much about Coeliac Disease. Coeliac UK is a charity which advises doctors on coeliac disease, not the other way round. To suggest that you eat a slice of toast to see how you get on, is in my opinion is irresponsible. You had been diagnosed with coeliac disease via biopsy and coeliac disease is not something you grow out of. I don't know whether you are aware of this, but, some people who have coeliac disease don't have any outward symptoms, and had you fallen into that category, you would become very ill, as the damage is been done on the inside (the villi in your gut) and continuing to ignore advice to eliminate all gluten/wheat from your diet can lead to other health problems, such as other auto immune illnesses (such as thyroid disease, which you already have), it can cause osteoporosis, malnutrition - because your body fails to absorb nutrients from your food, including anaemia and it can even cause cancer. So as you can see, coeliac disease must not be taken lightly, and is a serious condition which must be handled properly.
Did you have another endoscopy to diagnose diverticulitis? If so, and you were not eaten gluten at this point, the villi in your gut would probably look quite normal and healthy. The reason for this is, once you eat a gluten free diet, your body starts to heal and no longer produces the antibodies which are detected both in blood tests or other tests for coeliac disease. The antibodies are only produced in the presence of gluten/wheat. What type of arthritis do you have? If it is rheumatoid arthritis, this is another auto immune disease (like your under active thyroid). People with coeliac disease can also suffer with anxiety or depression. You really need to talk to a specialist about this. If you have been diagnosed with diverticulitis, you must have had some sort of internal procedure as that is how they spot any 'pockets' in your intestines which become inflamed. It is possible for you to suffer from both conditions and obviously, the diet for diverticulitis is different from coeliac disease and if you have both conditions, you will have to adhere to eliminating both gluten and all foods not allowed for diverticulitis (which means no nuts, seeds, sweet corn, spicy foods like curries etc.,you will find information on this on line if you don't already know).
I do know of doctors that get people to go on a 'gluten challenge' diet, but this seems rather strange to get someone to go on this when they have already been diagnosed with coeliac disease, because, as I said earlier, coeliac disease is not a disease you grow out of).
I would strongly encourage you to ring coeliac uk and get some proper, sound advice from them and tell them everything which has happen to you as I am concerned that if you start eating gluten again, you will become very ill. You need expert advice. Their phone number is
0333 332 2033 and their website is www.coeliac.org.uk.
I have coeliac disease and was very ill before I got my diagnosis (and am a few years older than you) and had symptoms for much of my adult life before getting a proper diagnosis and as a result of late diagnosis suffered from severe anaemia, malnutrition, thyroid disease, low vitamin D levels, and osteopenia (which is a pre-cursor to osteoporosis) and other things besides and would hate anyone to go through what I went through.