Discussions By Condition: I cannot get a diagnosis.

chronic anaphylaxis

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: jenna17273
  • June 1, 2007
  • 02:04 AM

I never had allergies as a child. About 3 years ago I developed really bad outdoor seasonal allergies. I took Zyrtec and then switched to Allegra 180. This past September I developed a case of hay fever and got a cortisone shot. I was tested for outdoor allergies and came back positive to every type of pollen, grass and tree. I also had a food rast test, which came back positive for all grains, apples, soy, etc. I did a many food challenge diets and still found myself with GI issues. I had an upper endoscopy, colonoscopy, barium swallow, and everything has come back normal. I have suffered about 9 episodes of anaphylaxis and nothing seems to help. They happen on vacation, in the dorm, and at home. I usually find myself nauseous, then vomit, break out in hives usually on my face neck and chest, my throat begins to close and I faint. I have used my Epi-Pen about 5 times. I have been on prednisone for two months and still had reactions when tapering. I tested negative for lupus and lymphoma. My diagnoses have gone from oral allergy syndrome, to soy allergy, gluten allergy, exercised induces gluten allergy and now I’m at a latex allergy (I don’t believe it though). Please help, any suggestions are welcome!

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  • I was about to post a similar story except that because I'm a medical librarian (I work doing medical research all day) I come in with a lot more knowledge to start with. I've always had all the allergies you mention, but in addition over the last ten years I've been coughing uncontrollably. Like you, I've been to a lung specialist, two gastroenterologists, and now an ear nose throat specialist. I've been put on antihistamines and steroids, but they don't work for me. The diagnosis is angioedema, or a swelling in the larynx (throat), which can lead to anaphylaxis (I haven't been that bad, however). I don't get hives with it, a.k.a. urticaria, but I used to have frequent hives as a child. I'm wondering if you might have Hereditary Angioedema (HAE), which is a genetic condition. You might ask your doctor to check your C1 and C4 proteins-- it's a simple blood test. However, be aware that there is a type of HAE called Type III that shows normal C1 and C4 levels. As for myself, I'm pursuing HAE Type III and also questioning if I might have H Pylori infection. If you have any question at all, it wouldn't hurt to ask your doctor about these two possibilities. I hope you post again. I'd like to hear more and I have a lot of knowledge to share.
    aquila 1263 Replies Flag this Response
  • I have suffered about 9 episodes of anaphylaxis and nothing seems to help. They happen on vacation, in the dorm, and at home. I usually find myself nauseous, then vomit, break out in hives usually on my face neck and chest, my throat begins to close and I faint. I have used my Epi-Pen about 5 times. I have been on prednisone for two months and still had reactions when tapering. I also have anaphylactic episodes and they come on from the following: eating a food I have an allergic reaction to (shellfish, hot peppers); the odor of strong scents like Rosemary, mold, and petroleum products; a reaction from being bitten by certain insects (blackflies & fire ants).You will have reactions from tapering because your adrenal gland is trying to take over where the prednisone left off. During that time your immune system will be very fragile and you'll pick up everything. It once took me nine months to finally get off of prednisone because I could only taper very very slowly. It was the most painful thing I ever went thru.What dosage of prednisone do they give you when you go to the ER? And do the symptoms disappear from taking prednisone?
    AshleyHH 45 Replies Flag this Response
  • i have been tested for everything, and the only problem is that if it were a true food allergy, i would have a reaction each time, and I don't. In the ER i get 60mg of prednisone and then it depends how long I am onlit from then. The symptoms calm down for the time being, but I also break out in a hot itchy rash all over my face and neck (im not allergic to soaps) and it also happen when i sweat. i am curious if i could be allergic to something i secrete in my sweat...
    Anonymous 42789 Replies Flag this Response
  • I've had 4 fairly sever allergic reactions in the last 4 1/2 months. Always get hives/rash my blood pressure always drops to where I almost pass out or faint and sometimes my lips/tongue swell aswell. I really can't narrow it down. It seems it's triggered at random times. The only consistant thing is that it happens around 2-:7:00pm and three attacks within 5:30pm-7:00pm. I've also had one minor attack though as well.. I really have no clue what to do
    knownotnow 1 Replies Flag this Response
  • this is probably not the issue of any here but i'll throw this out just in case. My uncle has a rare condition called systemic mastocytosis. (this condition is said to be underdiagnosed as most doctors are not aware of it) With this condition the body attacks itself causing allergic reactions to all kinds of things (even the smell of peppermint can give my uncle anaphylaxis, requiring an ambulance to be rung.. He's had to have CPR quite a few times). Usually there will be defining skin rashes of this illness but not in all cases.
    taniaaust1 2267 Replies Flag this Response
  • Chronic anaphylaxis- I know how it feels to be scared of when and where and how you will go into shock. It took me over 10 years to get a diagnosis-Mastocytosis. It is a big umbrella term, cause there are many variations on this disease. I had to research this over the years because it is an orphan disease and not many doctors have heard of this let alone recognize the symptoms. The best thing to do is to have some tests done. The thing with my shocks, like yours, seemed to accumulate. I was told that I was allergic to almost everything under the sun each time I reacted."Must be the fish you ate. Don't eat fish anymore." "Must be this food dye. Don't eat anything with this." Then I was shocking to almost anything around me-rain, showers, swimming, heat, cold, skin touch-you name it. I had a HUGE list of other symptoms as well. Anyhow, they just labeled me as "idiopathic anyphylaxic" meaning "I don't know-allergic to anything, sometimes." It was ridiculous!! I only was finally diagnosed because I did the research&brought it to my drs and DEMANDED they test me!!! I have to say in their defense that they don't have the hours on end to look things up like we do,and we also have more motivation cause we are desperate. I had 24 hr urine histamine test done when I was NOT anaphylactic. It showed my levels were abnormally high, even when NOT having a reaction. This is important-the levels should be LOW on a normal person on normal day. If higher on "normal" person, then something wrong. After that test came back, drs took it more seriously, doing blood tests, mri, scans, biopsy of skin&bone(only if needed) and lots of Q&A. Good luck in finding a diagnosis. After 12 years, I am OFF the 10 meds I used to take. My body is doing better now; I always keep my little "first aid" kit with me-Epi-pen, benadryl, albuterol inhaler, aspirin. If you need one some day, yours may be different or same. GOOD LUCK and wish you all the best. You are NOT alone.
    Anonymous 42789 Replies Flag this Response
  • this is probably not the issue of any here but i'll throw this out just in case. My uncle has a rare condition called systemic mastocytosis. (this condition is said to be underdiagnosed as most doctors are not aware of it) With this condition the body attacks itself causing allergic reactions to all kinds of things (even the smell of peppermint can give my uncle anaphylaxis, requiring an ambulance to be rung.. He's had to have CPR quite a few times). Usually there will be defining skin rashes of this illness but not in all cases.I was seeing a dr for this condition but it was ruled out by urine and blood tests. I am 31 now and have been having these episodes since I was 14. All allergy testing has been done and I have some mild allergies but nothing that would cause this. I do the dame thing he does. I have been looking into exercise induced anaphylaxis. That might help u some. I thought I was just a weirdo with some odd disease until I found this site. I am a respiratory therapist and am around dr all the time and none of them have a clue!
    Anonymous 42789 Replies
    • September 8, 2010
    • 10:39 AM
    • 0
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