Gluten Free Guerrillas
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Your shout, tell us your story!

Your shout, tell us your story!

We're nearing to a 100 members on here which is great. Yet we realised that we still have a lot of blank profiles, descriptions and the same lively people commenting.

So this week we'd love you to 'Shout about your story'! Tell us how you or your child was diagnosed with Coeliac Disease. Let's bust some myths and see if we had common or non so common symptoms. You don't have to write an essay we're just keen to collaborate. The more we share and interact the more we'll all get out of the group. You might be a newbie needing help from a Coeliac Guru or a Coeliac with lots of auto-immune diseases or a really positve story to tell us and inspire others.

So tell us...What's your story?

3 Replies

PS: If you have Thyroid, RA, Osteoporosis, Addison's etc share your symptoms to help others reach a swift diagnosis.


I won't go into much detail:

Diagnosed in 2004 as an 11 year old, was always quite a skinny lad, always lethargic, never ate properly, was very pale all the time, getting very frequent headaches and tummy aches. My GP was aware of coeliac disease at the time and i was sent for a blood test, and that was when i was sent for the endoscopy. Since being diagnosed i have healthily put on weight (now 5 foot 9 and 9.5 stone), my mum always told me how much colour came into my face and cheeks after following a gluten free diet, and felt much better in myself!

The doctors were never 100% sure where in my family coeliac disease came from, but reading other peoples stories i'm pretty sure i have an idea! On my mums side of the family my grandad has IBS, and his sister suffered from Crohn's disease, reading up on various sites i know that these 2 are both closely linked and sometimes mis-diagnosed for coeliac disease.

i was very lucky that my GP thought of coeliac disease straight away i know people have struggled to get a diagnosis and gone through years of suffering all pretty much down to a lack of awareness for what is a very serious auto-immune disease, so if your unsure and feel like you or someone you know is suffering from any of the related symptoms (whether severe or even mild) get down to your GP and make sure you mention CD!! it could change your life :)


3 coeliac children:

Child 1 (age 11): Diagnosed a year ago, following 4 years of tummy pains, fatigue, running out of energy & occasional fainting episodes (due to excruciating tummy pain). Much better on the diet - but still has the occasional week of tiredness/tummy pains, & we don't understand why - in between times she is fine. Coeliac blood test was positive, so was biopsy.

Child 2 (age 4): Similar symptoms to big sister, also was not gaining weight as she should (actually had lost weight). 2 Coeliac blood tests were negative, but consultant still thinks she is coeliac - now waiting for results of biopsy. Health has improved since starting the diet a month ago.

Child 3 (age 13): Glandular fever 18 months ago, didn't really recover, school attendance declined to zero, doctors thought it was Chronic Fatigue Syndrome (ME). 2 Coeliac blood tests negative, however given little sister's experience I wondered if he might also be coeliac & tried the diet. Improved from wheelchair to yomping round the park with dog in the space of a fortnight. Says his bones don't ache any more, has returned to school (part-time), & still improving steadily. Have sent off for genetic test from a lab in USA. Consultant thinks he is not coeliac, but rather is allergic to wheat - and would like to do tests for this....

I believe we have coeliac disease on both sides of our family - my husband's sister & uncle are both diagnosed coeliac. On my side of the family we have nobody formally diagnosed, but I suspect my grandmother was probably coeliac (she died in 1980, after a lifetime of "digestive problems". My grandmother's sister died from pernicious anaemia, her mother had some kind of autoimmune illness (can't remember exactly what) and her grandfather died aged 28 from intestinal TB - which is often confused with coeliac - perhaps even more so in the 19th century.


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