Severe coeliac

[Raindropsonroses87]

Had condition since 1976 but only diagnosed 2017. Very severe attacks requiring emergency ambulance because of breathing problem that only occurs during gluten attack.

Hashimotos thyroiditis with goitre since 1976 also when I was 10 years old.

[nellie237]

Hi raindropsonroses87.

I think that there are quite a few of us with Hashi's & coeliac here.

I hadn't heard about breathing problems with coeliac, although I have obviously heard of goitre obstructing wind-pipes.

I was in my late 40's when dx Hashi's & coeliac only a year ago, but my daughter was dx with type 1 diabetes at age 10, so I have some understanding of how horrible it can be to be so young.

[Maure]

On the same, ended up in heart unit on Lincoln hospital after two slices of bread. When doing the ecg they thought I either had a blockage or having a heart attack as I vomit dreadfully, chest pain. All the whole on saying its bread they aren't listening. After having thorough checks where they went with a camera through my wrist and two nights on hospital they concluded that yes it must of been bread. I react to all shops gluten free bread, pizza, ready made pastry and have had several prolonged attacks at home that's took me off my feet for two days or more. I now carry 2ecg copies, normal and abnormal so if it hairband again I don't automatically get taken to heart unit. Dibs like you may be having some reaction like me.... My breathing becomes different, erratic. My heart is fine x

[Raindropsonroses87 in reply to Maure]

Hi MaureVery interesting to hear about your reaction to gluten as your reaction to being 'glutened' is exactly like mine. The vomiting is frightening and the strange breathing is horrible. The last attack that I had 2 months ago was after eating a meal in a restaurant that said the meal was gluten free!!! The emergency paramedics that came were here for 2 hours (5 came) and they did ECG which was sent to hospital heart department and results came back electronically negative.

Don't know if you also feel very slowed down in responses to questions from the medics and moving known as gluten ataxia.

What a horrible condition it is and people think it's just an allergy and not a serious thing even though it's called coeliac DISEASE.

Best wishes

Julia

[stillaboveground in reply to Raindropsonroses87]

HI Raindropsonroses87. I have also been told I am on a stupid faddy diet, attention seeking, if only they knew.

Ruth

[Raindropsonroses87]

Hi, BridgetThanks for your interesting reply about coeliac disease. You are so right about the medical profession not understanding properly about the condition and people just think it's a choice that you have made not to eat gluten.

Celebrities don't help by going gluten free as though it's just a fad!

Magazines the same.

What a good idea about the epi pen.

Julia

[Julietiff]

Hi, I was diagnosed in 2003, but had stomach problems since I was a small child. The only commercial gluten free food I eat is pasta, crackers and occasionally bread, so everything else is naturally gluten free so meals are easily planned. Even if I buy the same item of food weekly I still check ingredients.

[Raindropsonroses87 in reply to Julietiff]

Hi, very interesting what you said about continually checking for gluten. You cannot rely on food staying gluten free. I have Plant Pioneers Plant Burgers. Unbelievably the two pack is gluten free but the 8 pack contains gluten!!!! I buy it at Sainsbury's.I emailed, phoned and wrote to the firm but never got a reply.