Vitamin D deficiency and idiopathic anaphylaxis

by Cat B
(California)

I have idiopathic anaphylaxis, with more than 20 episodes requiring use of an epi-pen, followed by ER visits in the past 12 months. Bloodwork show no allergies, my thyroid function is normal and my 24 hour urine sample shows no sign of carcinoid syndrome.


The one thing that was recently found in my bloodwork is an extremely low vitamin D level (6). This explains the stiff legs and pain in my lower extermities, and I'm wondering if there could also be a link to my auto-immune responses that could trigger anaphylaxis type symptoms. Generally, I have itching and a bright pink rash daily; and about every 2 weeks this progresses to a very red rash, some adema (usually eyes or tounge), and if I don't use the epi-pen quickly enough, wheezing, trouble breathing and sometimes very low blood pressure (as low as 70/30).

What do you think? Could there be a connection? I'm on 5,000 IU of vitamin D every week for the next 90 days, and I'm asked to get out into the sunlight at least 1/2 an hour daily.

Thanks!

Comments for Vitamin D deficiency and idiopathic anaphylaxis

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Have you tried fasting
by: Kerri Knox, RN- The Immune Queen!

Hi Cat,

There is definitely a connection between auto-immune disease and vitamin d deficiency- also there is a connection between vitamin d deficiency and inflammation of the digestive tract, which is one of the reasons for food allergies, which may be the cause of your anaphalaxis (or not, but it's certainly suspicious for food allergies).

You don't say where you live in California, and since it's winter, only the sun in Southern California will produce significant amounts of vitamin d- and even then only when it's sunny. I'm in southern california right now and you couldn't talk me into getting into a bikini and sunbathing the past few days. It's cold. And you must get sun on your skin to produce vitamin d, not just 'be' in the sun.

And the 5,000 IU's of vitamin d per WEEK is a total and utter insult and joke to you unless you really can consistently sunbathe most of your body every day in the midday Southern California sun. Otherwise, you are not getting enough and are going to remain deficient with such incredibly low levels of vitamin d.

However, even correcting your vitamin d may not make a difference in your condition. It may, but it's likely that you still are allergic to SOMETHING (they only test for certain things, so when you say that you've tested negative for allergies to everything, you actually mean that you've tested negative to the things that they've tested you for, not that you are not allergic to something).

So, one way you can see if you can find out if it's a food allergy is to FAST for a while and begin adding in new foods VERY slowly, one food every 3 days or so. This should only be done if you have stable blood sugars and someone to keep an eye on you. But if you are water fasting and still have symptoms, then it's probably not a food allergy. If you fast and your symptoms clear up, well then, you have a place to start.

I have MANY other suggestions, but I don't know what you've already tried. However, while fixing your vitamin d level might HELP this problem, it's unlikely to be the magic bullet that's going to make everything all better. You're going to need to do work to clean up your gut, get detoxified and find out, on your own, exactly what you are allergic to.


Kerri Knox, RN

Thanks!
by: Cat B

It's 50,000 rather than 5,000 (typo). I have tried food elimination and right now my allergist has me avoiding additives (I cook from scratch at home anyway because my father in law has severe sodium restrictions).

I've not tried a water fast. I could. I also have sphincter of oddi dysfunction...3 sphincterotomies and it's calmed down, but my "gut" hasn't been normal for about 7 years...since my gallbladder came out and I had hte Sphincter of Oddi reaction.

I've also had folks suggest cutting out meat and wheat.

You haven't eliminated gluten yet?
by: Kerri Knox, RN- The Immune Queen!

Hi Cat,

You haven't eliminated wheat (ie: gluten) yet? Gluten the THE NUMBER ONE most allergenic substance on the PLANET! That would be the absolute very first thing that I would try eliminating, along with dairy.

I would have assumed that with such a life-threatening condition that you would already have tried food elimination diets that included variously eliminating the most allergenic substances already. Since you haven't, then doing a fast might be premature. However, it will likely very quickly tell you, within just a few days, whether or not you should even pursue foods as your allergenic triggers.

In any case, there are TONS AND TONS of things that you can do to decrease the allergens in your life and your toxic load and to decrease the inflammation in your digestive tract- which started long BEFORE you had your gall bladder out- or you wouldn't have needed to have your gall bladder out!




Kerri Knox, RN

Possible cause for 'idiopathic' anaphylaxis
by: Anonymous

Please look into salicylate sensitivity - it could be the cause of your symptoms. Salicylates are everywhere - in vegetables & fruit, personal care products, cleaning products et al . . . .

sphincter of oddi
by: Anonymous

I also have SOD type 3 and Vit D deficiency. SOD means no bile from the gallbladder or enzymes from the pancreas are getting mixed in with your food right after it leaves the stomach. I had my biggest problems with any animal based food...in their unbroken down state, they were too hard on my intestines...and allergy, IBS issues arose. Vit D is a fat soluble vitamin, so are A, E, and K, so I'm sure I'm deficient in the other three too. What works for me is taking Dicyclomine (relaxes the sphinter muscle in order to make the bile/enzyme release) in the morning :30 before vitamins and breakfast and again for dinner. I take 5,000IU of D in the morning with a whole food based multi.

At night I get my animal based foods in. I've been having a terrible time with repeating lung infections and recently had beef liver for dinner with papaya for dessert and my lungs (and energy levels) felt a lot better the next day (all that Vit A that I'm sure I was missing thanks to SOD). Since I haven't had my Vit A levels tested I don't want to eat too much liver for fear of Vit A toxicity, but apparently liver is the one of the best things you can eat for lung repair and papaya the second best.

Mast cell disorder
by: Anonymous

Wow a lot has happened since my initial post. W/R/T idiopathic anaphylaxis, I was accepted into a study at NIH. After working with my bone marrow sample, we know that I have a mast cell dysfunction. Basically I have an abnormally high number if them and they trigger randomly and often. We don't know how to stop that though. W/R/T the sphincter of oddi, I've had 2 more sphincterotomies. The last one resulted in a punctured intestine, so no more. We just manage the pain now. I also now have hyperangiodemic POTS, a form of sinus tachycardia associated with the mast cell disorder. My vitamin D levels are stable. The prognosis is not good-all the things I do to stay alive now will probably cause co morbidities and that's the deal.

I have mast cell activation disorder
by: Anonymous

I was thinking mast cell the whole time! Please tell me you are on oral cromolyn sulfate. It has changed my life! No more abdominal pain, migraines, rashes, wheezing, chronic fatigue, diarrhea, facial flushing, joint pain is getting better.

I had 10 episodes of anaphylaxis in 18 months, and the epipen didn't stop it. I ended up on the ventilator and in comas each time!! The doctors had every diagnosis under the sun..from "it's all in your head" to "vocal cord dysfunction"...gimme a break.

Now I do differ from you in that my tryptase levels are normal. I can't even get a bone marrow biopsy because the tryptase is normal. We are thinking I have Mast cell activation syndrome...which can be had with a normal tryptase level.

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