I progress....: One thing I have... - Gluten Free Guerr...

Gluten Free Guerrillas

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I progress....

pretender profile image
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One thing I have learned is patience, yesterday I spoke to a flooring specialist who knew what I was talking about. The job I was intimidated to do at a Primary school involved chemicals and a process. I have now found out after seven years that I have a "Formaldehyde Allergy" also that the method used in the job created dust that lined the top of my left lung. Now referred to St Thomas' locals can't do it.

Thanks to Coeliac Disease and the Gluten Free diet I have evidence

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pretender profile image
pretender
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15 Replies
Mango1 profile image
Mango1

Hi Pretender

Just proves if you are not comfortable doing something and your gut instinct is to say no, perhaps we should all take note of your position now. My husband and family think I am a 'witch' ha ha, but I get an instinct sometimes that tells not to/ definitely do, something and usually I am glad that I listened.

I do hope St. Thomas' can help you.

pretender profile image
pretender

Thanks allergies, it is bad that the patient has to do the doctors job. Referral to specialist Guy's & St Thomas' Skin Allergy Service because they have links with King's Immunology Group so another day out and another in April for my Industrial Injuries assessment again. Then next Tuesday now my blood pressure is more under control an appointment with the surgeon.

Penel profile image
Penel

Well done pretender, it pays to be persistent.

On average it takes about 13 years to get a diagnosis of coeliac disease, let's hope you get sorted out more quickly than that.

pretender profile image
pretender

My first diagnosis was aged 6 in Hong Kong only to be told aged thirteen I didn't have it after 45 years yes I do have it which might be a record for two reasons 1) to read my hospital notes 2) to confirm the first diagnosis. Just been out for lunch with my step son, a smoker and yes the rash appears from his smoke. Coeliac Disease is petty compared to this.

pretender profile image
pretender

We now move onto a whisky trial having no problems with the bread. Having viewed the DermNet NZ re formaldehyde to find Cellulose esters on the sources of exposure to Formaldehyde, fits in with Hydroxypropylmethylcellulose.

pretender profile image
pretender

Still eating the bread with no problems however feeling fragile this morning after 35cl, 40% whisky no coeliac symptoms as would be expected. Having been around smokers my rash reappeared after 24 hours it was gone.

Penel profile image
Penel

Take care pretender, you may be a coeliac and have no outward symptoms, but be doing damage internally.

As for coeliac disease being petty... It's all relative. My coeliac symptoms are acute pain with vomiting and diarrhoea, some coeliacs may have to be hospitalised with dehydration. A few people go into anaphylactic shock.

pretender profile image
pretender

I may be a coeliac and according to available sources the GF/WF bread should be safe and a well known organisation states that alcoholic spirits are GF. I have been tested for IgE to wheat, negative. anaphylactic shock is usually the result of an allergic reaction, coeliac disease is not an allergy. With anaphylactic shock blood pressure (the same with CD) is usually low mine escalates to 210/108.

My next course of action is a referral to Guy's & St Thomas' Skin Allergy Service who have links with King Immunology Group.

Mango1 profile image
Mango1

I am with you on this Penel, I had a couple of crisps on sunday p.m. and boy did I know it an hour or so later with crippling stomach cramps and then diarrhoea during the night.

I was also hospitalised several times before I knew I was gf, with dehydration and my blood pressure dropping very low. One time I was on a drip for a week. I can't believe how stupid I was to even try the crisps, I am usually so careful about what I eat outside my home.

pretender profile image
pretender

The dehydration is caused by the diarrhoea, its the same with vomiting you loose liquid (dehydration) you have to replace it (rehydration). Low blood pressure can also be linked to CD as well as anaphylaxis.

For such a quick reaction it could be food poisoning or a need for an IgE test for an allergen. CD is not an allergy and not a type 1 reaction.

Mango1 profile image
Mango1

Hi Pretender, could you explain what an IgE test is? I have always reacted quickly to whatever I eat if it is not safe for me. That includes lactose as well as gf. I sweat but am freezing cold and doubled over in pain until everything has left my body.

catherine profile image
catherine in reply to Mango1

Hi i am exactly the same - if i eat anything which i shldnt then even within 5 mins i am throwing up or the other end - violently and so ill shivering/fever/pain till all out of system. I wonder why it had different effects on diff people. ?

Penel profile image
Penel

IgE is short for immunoglobulin E which is an antibody produced in the body. It is capable of triggering a powerful inflammation to an allergy. An IgE test will see what level it is in the body.

There was a discussion on severe reactions to gluten/wheat some time ago glutenfreeguerrillas.health...

pretender profile image
pretender

An IgE test is with bloods to find an allergen but medical history does play a role, it helps if pre symptoms are noted.

Sadly the allergologist informed me that Formaldehyde is not an IgE mediated allergy but research as far back as 1999 says it is.

I refer to allergies response, with the sweats, then after awhile freezing cold, maybe gasping for breath and if BP tested would it be excessive? one occasion vomiting X 2, another loo time helping, 36,000feet above Turkey. The body goes into a panic attack you are there but have no control?

Since keeping a diary I have pinned down (fingers crossed) causation of my non coeliac issues and now enjoying a chip butty, bacon & egg butty by making sure the culprit is not present.

Seven years its taken and no doubt a few more yet.

Mango1 profile image
Mango1

Thanks Penel for the info. I am not sure if I had subscribed to this website in October, but in any case I missed the comments. I too have Asthma for which I use a Pulmicort pump morning and evening and take Flecainide for A.F. twice a day. The only time I get the cold sweats and severe pain is when I have been glutened. I am going to get in touch with my Dietician at UCLH to investigate further.

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