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Anaphylaxis

RitaOden profile image
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How many of you have experienced anaphylaxes (or a severe allergic reaction)? What were your symptoms and how did you resolve them?

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RitaOden profile image
RitaOden
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FionaGFG profile image
FionaGFGAdministrator

Hi Rita

We're not aware of many members on here having Coeliac Disease and having severe allergies that cause Anaphylactic shock.

Coeliac Disease:

As you're probably aware Coeliac Disease is classified as an auto-immune disease not an allergy, (although it's often referred to in the press as one which can be confusing). For us Coeliac's our immune systems perceive gluten (in wheat, rye, and barley) as a threat and attack it and in doing so cause the variety of reactions we experience if we get 'glutened'. Not to mention putting us at a higher risk of other auto-immune diseases (Thyroid, Diabetes, Pernicious Anemia, Rheumatoid Arthritis) and associated problems like Osteoporosis.

Anaphylactic Shock:

Anaphylactic shock occurs if your body's immune system overreacts in response to a particular substance (allergen) that you have been exposed to before.

Common Allergens that can cause Anaphylactic shock are:

Food:

* nuts

* shellfish

* eggs

* milk

* wheat

[*so some Coeliacs may also experience this although this is rare]

* soy and

* sesame seeds

Medicines:

* penicillin and some other antibiotics,

* non-steroidal anti-inflammatories (NSAIDs), such as aspirin and ibuprofen, and

* anaesthetics and some painkillers.

Less common triggers:

* bee or wasp stings,

* latex (rubber),

* exercise, and

* exposure to cold air or water.

(Source: nhs.uk/Conditions/Anaphylax...

When the allergen gets into your bloodstream, it causes the body to release massive amounts of the protein histamine and other chemicals.

Histamine causes:

* blood vessels to widen, leading to a sudden severe lowering of blood pressure and narrowing of the airways in the lungs, and

* blood vessels to leak, causing swelling (oedema) in the surrounding tissues and a further drop in blood pressure.

Which is why many people who suffer from Anaphylaxis need to use Epi pens and anti-histamines in order to ensure that the reaction above does not become life threatening.

Coeliacs & Intolerances:

We know that on many of our groups Coeliacs often find they have other food intolerances once they go gluten free eg. lactose and fructose intolerance. This can be due to a temporary problem eg whilst our villi in our stomach heal we can find it hard to process the enzymes in lactose. Or it can simply be because we may always have been sensitive to other foods yet our Coeliac symptoms masked it eg soy sensitivity.

Group:

We'd be interested in comments from other group members. We know that many Coeliacs find they have mild latex allergies or allergic rhinitis (eg to dust). So it would be interesting to see if any have the rarer Anaphylaxis reaction to any substances as well.

Yourself:

You don't mention what causes your Anaphylaxic shock and how you discovered it? Did you find this out pre Coeliac Disease diagnosis or afterwards? Do you wear a medic-alert bracelet or tag in case of any emergency treatment?

Handy reading:

nhs.uk/conditions/anaphylax...

anaphylaxis.org.uk/informat...

patient.co.uk/doctor/Anaphy...

medicalert.org.uk/

Effie profile image
Effie in reply to FionaGFG

I also experience anaphylaxis! It happened so frequently and often that I was actually misdiagnosed with asthma for the first 25 years of my life (among many, many other things. Stupid non-psychic doctors!) The epi pen is absolutely essential, but I also have benadril ready tabs in my purse at all times. They go either on or under the tongue and absorb into your blood stream really fast. I personally hate the epi pen because I have a heart murmur and bringing my heart rate up so fast with the adrenalin just really, really hurts, but I'm not sure how it is for people with normal hearts. The ready tabs have also proven useful for inflammatory reactions in my joints, although it's just enough to get myself moving again. It still hurts like crazy until I get some painkillers in me.

I'm actually really glad to read that there's another celiac out there who has this problem! I'm sorry you have to deal with it, but it's quite comforting to know I'm not the only one!

FionaGFG profile image
FionaGFGAdministrator in reply to FionaGFG

Effie

Thanks for sharing this. What causes your reaction? Wheat or another substance? Did you found out you had anaphylaxis before you discovered you had Coeliac Disease? We're just curious as it may help other Coeliacs. As you say you've not heard of many who also have anaphylaxis as well.

Thanks

Effie profile image
Effie in reply to FionaGFG

Wheat/gluten seems to be the only thing that causes it. I was only diagnosed with celiac 2 years ago, but was told I had asthma when I was 12, which was also when eating started to hurt and I started absolutely shedding weight. The anaphalactic attacks mimic an asthma attack, and ventolin seemed to help mid attack, but none of the preventative stuff they gave me, like inhaled steroids, did anything to prevent the attacks. The ventolin also hurts my chest the same way the epi pen does, so I'm sort of assuming they do the same thing. I no longer carry a inhaler just because I have an epi pen prescription and dont have one for ventolin. Symptoms totally disappeared when I got on the gluten free diet, other than the occasional rogue attack after I do something stupid like eat at a restaurant. I was actually diagnosed by my pulmonologist, who, after 13 years of pumping me full of every kind of steroid and speed on the market in a effort to cure my asthma, finally asked me about other health problems and put everything together. I had never really paid attention to the GI problems, which is what usually tip off doctors, because my frequent complete inability to breathe was a much more immediate and urgent problem.

RitaOden profile image
RitaOden in reply to FionaGFG

Hi Effie, it is gluten that causes anaphylaxis in me. As small as one-eight oof a teaspoon of gluten will cause this severe reaction. The last time was bbread crumbs I'm the mayonnaise. I'm glad to learn about the redi tabs. That will be helpful. I have also used charcoal tablets but I have a hard time finding then. I keep the epi-pen with me at all times. I don't have a necklace but that is a good idea. The symptoms for me are dizziness, Stomach ache, diarrhea, extreme drop in blood pressure, itchy hives, pass out. It can be life threatening

<b>Updated on Oct 10 2010 4:48PM:</b> the anaphylaxis was the reason for the Celiac diagnosis. My doctor of 15 years apologized to me for not figuring it out earlier. I was hospitalized four days with every kind of test you can imagine. If any of you have a severe reaction without an Epi pen, you should call 911 because it can be fatal. Eating at restaurants can cause an accidental ingestion of gluten. Not everyone will react so severly, but it's a good idea to let your family members and your co-workers aware. If you pass out, you won't be able to call 911. I start getting dizzy, then break out in hives aroundy neck. When my blood pressure drops, I pass out. It's like people who are allergic to bee stings, etc. I hope my experience will help others.

FionaGFG profile image
FionaGFGAdministrator in reply to FionaGFG

Effie

Thanks we're sure this may help other Coeliacs who are getting severe problems. It often seems that it's hard for Hospital Doctors to join the dots between symptoms yet as you say in your case the main problem was the breathing difficulties not the GI problems. So it goes to show that it can be hard to put 2 + 2 together and get 4.

It's probably worth mentioning to your Doctor at your next visit the chest pain you get when you used to use the Ventolin and when you use the Epi pen just to ensure that's normal. We're glad going GF has helped your symptoms. If you get any other medication and are based in the UK it's worth looking into the pre payment card for prescriptions as that can work out cheaper nhs.uk/chq/pages/2422.aspx?...

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