Need Some Tips? Thanks.

[paperbagprincess]

I'm 21 years old and when I was 17 my Mum and uncle were both diagnosed (blood test, then biopsy). Her doctor said that my brother and I should be tested. Prior I ate a good diet, but had foliate and b12 deficiencies. I was getting b12 jabs and on foliate tablets, it didn't improve. I also had the odd upset stomach for no apparent reason. I lacked energy and always tired.

So I had the blood test. My reading was 13 the first time I was tested, then the second time it was 20 (0-20 considered normal, 20-100 possible, 100 over pretty much definite). My Mum had the biospy (without any sedation) and said it was horrible. I was not keen for that. The doctor ran the genetic blood test, which confirmed I was a carrier.

I decided I would try going gluten free. I felt moderately better in the first 6 months, but after a year I felt a lot better. If I eat gluten, I know about it! (although most people become more sensitive). My b12 and foliate have returned to normal, actually they're higher in the normal range.

I saw a dietitian last year. She said that she thought there was 'definitely some damage to the villi' but I would have to go back on gluten and have a biopsy if I wanted to confirm it. I said no point, if it was normal I would go back on a gluten free diet because I felt better, and she agreed. My doctor said that she agreed with the dietitian.

My family tell me it's all in my head and that I don't actually have it. I tell them what the dietitian and doctor said but they just dismiss it. I have many doctors, nurses and pharmacists in my family, so it's a bit difficult to argue this with them! I've been gluten free for 4 years.

Does anyone think that this is all in my head? Can I say I have Celiac Disease? Any suggestions for putting up with my family?

[Hawthorn]

Does anyone think that this is all in my head? Can I say I have Celiac Disease? Any suggestions for putting up with my family?

Do I think it's in your head? Unless there is some kind of mass hysteria going on with the doctor and dietitian then nope, it's not in your head. Your family cannot say it's in your head, since they don't feel what goes on in your body.

Do you NEED the diagnosis. I am on a gluten challenge at the moment, and it's just horrible. I'm only 28 days in.

I am going for the diagnosis because there is no known family history of it - diagnosed anyway. I do not know about my birth father, all I do know about him is his name and that he has greek heritage. For all I know celiacs is rife in that side of the family and I will never know. I have children. If I test positive, I will get them tested, so it's for them that I do this, either now, or if problems show in later life.

Dealing with family....I have this same problem. At first I would give in and eat gluten just to shut them up, now when they say it's all my head I either completely ignore it or say something like 'and how would you know?' It did once come to a bit of an argument with my father, but he backed down and has since left me alone about it. My mum has done a complete turnaround since she's seen my health, physically and mentally drop since being on the challenge.

Bottom line is you don't need anyones approval to be gluten free. It's a free world and it's your choice. You need to be tough on this point since you intend to be gluten free with or without diagnosis. You are taking that choice for yourself, you're not hurting anyone so it has absolutely nothing to do with them. As an adult you are free do this.

Good luck whatever you decide

[paperbagprincess]

Thanks for your reply.

I just don't understand why they say it's all in my head. The fact that my deficiencies (I have copies of the blood tests!) resolved on a gluten free diet must say something.

I believe a lot of families probably have Celiac Disease, but in the past it was rarely/never tested. I've heard speculation that Hitler had Celiac Disease. When you're getting your blood test done, ask for the carrier test as well. My doctor said those who have the genetic disposition are more likely to be sensitive and may develop full blown Celiac Disease.

It's not easy to ignore them when you're at the dinner table with them at family dinners. My aunt will make a comment (because she likes to be provoking) and that'll get the rest of the family going and it'll ruin the night. My aunt always makes comments like 'so you didn't have the biopsy so you don't actually need to be gluten free' or 'you probably just tell yourself you're going to feel worse when you've eaten some gluten'... And she's a pharmacist.

I'm trying to be tough about it, but can you imagine arguing with doctors and other medical professionals about this around the dinner table? It's much more difficult than just the average person who knows little about Celiac Disese.