Coeliac Men: Tell us your stories

[FionaGFG]

Hello Coeliac Men!

We wanted to write a short blog post just for you. As you've probably noticed on most of the online Coeliac Forums there always seems to be a high percentage of Women to Men. Is it really true that Coeliac Disease affects more Women than Men*? Or is it just that Women are more inclined to visit their GPs and to talk about their worries and symptoms online more than Men? Well that's where you can help us bust some myths. Tell us what Coeliac life is like for you. Do you find some aspects of GF harder as you're a man? Or do you think too much is made of male versus Coeliac symptoms?

We'd like you to comment on this blog by saying 'Hi' and just jotting down a few points based on these:

1.What were your worst Coeliac Symptoms?

2.How did you get diagnosed?

3.How long (with hindsight) do you think you had Coeliac symptoms for ?

4.Did you discuss your symptoms with your friends, partner, family before seeing your GP?

5.What's been the hardest lifestyle adjustment for you since diagnosis?

6.What's the best thing about being a gluten free man?

7.Tell us what you'd like us to blog about in particular?

If you'd rather just comment on the [Big question] feature instead that's fine. We're just keen to get members to break the ice so we can all share our Coeliac perspectives and encourage discussions and GF health tips on this site.

PS: <<<COMPETITION TO WIN AN IPOD TOUCH>>>

Don't forget to click on the [Compare your Hospital] feature.

Just answer a few questions and details and you'll be entered into the site's competition to win an iPod Touch! Just imagine the handy apps and music you could load that up with. Like this handy app with all the 'Celiac Travel cards' on for eating out abroad:

itunes.apple.com/gb/app/glu...

See:*Gender and Clinical presentation of Coeliac Disease Study, ncbi.nlm.nih.gov/pubmed/857...

[philaustin]

Hi, Okay, my comments:

1. Worst symptom was having to run to the toilet five times in the morning, thinking it was IBS.

2.Diagnosis was a slow process. Went to the GP with a list of problems including anaemia, 'IBS', tiredness, weight loss, bloatiness, flatulence, migraine. Sent me for test after test; blood, stool, and more blood tests before sending me to the gastro for a 'periscope' inspection. That took two months. Gasto said I should have endoscopy at both ends. After a two month wait the gastroscopy showed I had coeliac disease. Total time was 4 months. Havent had gluten since, except by mistake, twice (curry sauce and gravy). No longer have any tummy problems at all.

3. I reckon I have always been ill. I was a slow developer and was diagnosed with anaemia when I was 7. I often had stomach problems as a kid.Despite years of hospital visits they never found the cause. After leaving school I seemed to be okay, and never visited a doctor again. I became a blood donor at 32.The 'IBS' started about 15 years ago but I ignored it and just got on with life. The really bad symptoms started around Spring 2009, and my daughter insisted I see a doctor. I no longer take iron tablets and the last blood tests showed I don't have anaemia. The bone scan I had showed I have some bone loss.

4. My wife and daughters knew I had problems before I went to the GP. It was obvious really. My daughter was worried about me.

5. The hardest thing is going without bread and beer, being a fan of real wholemeal bread and real ale. Second hardest is travelling. All food designed for people 'on the move' is wheat based. Try getting a filling snack at an airport or motorway services without wheat! Third hardest is being at work when sandwiches, biscuits and cakes are handed out and I have to explain the whole thing to the same people again and again. Then people around me talk about going out for some 'good bread and beer' deliberately taunting me because they know I can't have any.

6. Being a man I am not particularly interested in sweets, cakes, chocolate and ice cream. Not being able to have some of these must be hard for females with CD.

7. I would like you to blog about getting a few fast food outlets to do filling GF versions of their meals: gluten free batter on fish, chips cooked in seperate friers, GF buns in burger bars, GF sausages in hot dogs, GF coating on chicken, chinese takeaway with GF soy sauce. It would also be good if you could have a go at the food manufacturers who say their products 'might contain gluten'. Why?, and those companies who make things like soup and put wheat in it where they could just as easily use corn starch. Finally, get some of the big pub chains like Wetherspoons to stock GF beer please.

[FionaGFG Administrator]

Thanks for such an open response. It helps all current and future readers see symptoms of Coeliac Disease. We're sure you've inspired many of the other men to jot down their thoughts as well.

Good blog suggestions. FYI: We're aiming to keep this site focused on peer to peer health and lifestyle tips, with the odd topical blog thrown in. Whilst using our Facebook page for news and discussions. Our blog will continue to focus on campaigns and promotion of Gluten Free Heroes (see here glutenfreeguerrillas.tumblr.... We do have other online plans and are working on these. We'll keep you all posted. Your point about campaigning to make fast food outlets more accessible for Coeliacs is interesting. We'll delve into this in more depth in another blog post. We know some Coeliacs feel we should shun such outlets and embrace healthier living whilst others want choice to eat what they want. Re beer: You might be interested to know we've been in talks with a leading GF beer supplier in the UK about stocking their GF range in pubs and GF friendly food places. We'll keep you posted on this - we're awaiting an update.

I know many female Coeliacs who often feel that CD must be worst for guys eg the stereotypical view of men loving beer, sport and curry/pizza etc. So it's good to see you've busted that myth and that the switch to GF wasn't too hard initially. Despite being female I don't have a sweet tooth thankfully. One of my biggest initial cravings was for KFC Zinger burgers and Garlic Bread. Yet many of my female friends initially said 'Oh you mean you can't eat cake ever again? I just couldn't cope without it'. So you maybe right Phil maybe women do find it tougher initially?

Men - that's your Q to dive in and tell us your story...

[philaustin]

Regarding Coeliac disease affecting more women that men I understood that it was equal, but men don't get diagnosed so easily because they are too embarrassed to talk about their problems. My wife reads magazines such as 'Pick Me Up' with these 'true life stories', and the odd article from a coeliac pops up there occasionally. The last one I read stated that coeliac disease affects mainly women. Where do these magazines get their 'facts' from I wonder.

There is so much mis-information around.

My brother in law's partner is studying nursing. She went on a one week course on allergies and came back and told him that "coeliacs are provided with free gluten free food by a charity". Now if that's what they're teaching nurses what chance do we stand?

<b>Updated on Oct 18 2010 7:10PM:</b> I reckon us blokes are more touchy about bodily functions whereas women have to be less embarrassed because of having babies, where medical staff get to see everything, and nobody minds because its all perfectly natural.

Real men don't have serious gut or bowel problems, just 'dodgy guts from the beer or takeaway' the night before. As for putting anything up there, including cameras, well it automatically smacks of homosexuality doesn't it? So we just put up with the symptoms.