Appointment With Immunologist Tommorow.

[sj75]

I have my appointment with the immunologist tommorow and they have rung with a few questions for me but still havnt told me what they are planning to do but its making me more and more nervous each time they ring with another strange question or request.

I have got to take cooked and uncooked chestnut (this was what 1st caused my throat to swell and i really hope they dont want me to eat it). They have now phoned me this morning to ask if i have had any problems with kiwi fruit or avocados??? does anyone know why they would have specifically asked me about those 2?? are they linked to chestnut in some way or another? or is it for completely different reasons?

I wish they would have just told me over the phone what they are planning to do rather then leave me with my overactive imagination.x

[firewatcher]

sj75,

Rest easy, it looks like you've got a good immunologist! This is from the Journal of Allergy and Clinical Immunology from 2004:

Abstract

Rationale

Allergy to chestnuts has been widely reported in the latex-fruit syndrome. However, few studies address actual allergy to chestnuts in patients reacting primarily to this food. We report a case series of chestnut-allergic patients to find out clinical and immunologic features.

Methods

Twenty-two consecutive subjects proven to be clinically reactive to chestnut by a positive DBPCFC result or a convincing history of anaphylaxis were included in the study. Patients underwent SPTs with chestnut, banana, avocado, kiwi, melon, peanut, walnut, hazelnut, latex and aeroallergens, as well as specific IgE determinations. Relevant allergy to the other foods was established by the DBPCFC method.

Results

The age of onset of reactions to chestnut ranged from 5 to 70 yr. (median=28 yr.), with 8/22 (36%) patients having experienced severe anaphylactic episodes. SPTs with chestnut were positive in 71% and specific IgE was detected in 54% of patients. Besides, 86% and 59% of patients had also positive responses to pollen and latex allergens, respectively. Eighteen patients had actual allergy to other foods; mainly banana, 45% of patients; avocado, 40%; and hazelnut, 32%. There was a significant association between sensitization to latex and clinical reactivity to avocado and/or kiwi (p<0.01); while reactivity to hazelnut was associated with allergy to peanut (p=0.003) and walnut (p<0.001).

Conclusion

One third of the chestnut-allergic patients experience severe anaphylactic episodes on ingestion. Chestnut reactivity is frequently associated to actual clinical allergy not only to fruits, but also to other tree nuts.

[autumn]

Firewatcher posted some good information. I'm not sure this is what they have in mind, but as far as the cooked and raw chestnuts go, there's something called oral allergy syndrome in which people who have an allergy to a pollen will have oral allergy symptoms after eating something from that pollen family. Often, if this is case, someone who reacts to the raw item does not react to the cooked item because heat changes the protein structure in the food. I think that's the issue with latex-food allergy, too; the food and latex share similar protein structures.

[sj75]

thanks guys, its all so complicated but i can understand the pollen relation. Do you think it will just be blood and skin prick tests that they will do?

Its minus 11 (minus 19 in some parts) here and we have 7 inches of snow and more due overnight so im hoping i can get to my appointment. The chap im seeing is a professor and apparently quite well renowned in the uk so hopefully im in good hands and he will have actually heard of pots!

[Sarah4444]

When I had my tilt table test the admission forms asked if I had allergies to bananas and kiwis - I think it was part of their screening for latex allergies. I hope your appointment goes well - let us know what you find!

[issie]

I'm finding food sensitivities as a probable reason for low Igg and autoimmune issues. My POTS is better and so is my neuropathy since changing diet.

[sj75]

Well my appointment was very informative but im not really sure where to start!!!

i had skin tests and didnt react to the chestnut but did to a couple of other things (house dust mite and timothy hay). I have had some blood tests to test for other specific allergies and to check for mast cell issues.

I have food intolerances as well but he feels that the itching and throat issues i have been getting maybe a form of idiopathic angiodoema related to autoimmune/autonomic issues. He told me he thinks i have cfs/fibromyalgia and that if these were better controlled my autonomic symptoms would improve. He is reluctant to give me an epipen until the blood results are back (no good if its idiopathic anyway) as he feels i am releasing huge amounts of adrenaline innapropriately and doesnt want to add to this. He thinks cbt would be a good starting point to help with this and has apparently seen vast improvements with other patients like me and it has meant less medications and improved quality of life??

what do people make of this, has anyone had cbt and if so has it helped with the adrenaline issues??

[issie]

I think maybe work on the sensitivities with food and see what difference that will make. I also have CFS/FMS and the adrenal issues (hyperPOTS). I'm not sure if Behavorial therapy will help - all it could do is change maybe the way you react to stressful situations. I'm sure that my reactions to situations could be improved, but I'm not sure if changing the way you "THINK", is going to change a possible chemical over reaction to possible food sensitivities/environmental sensitivities. Work on those first and see if that is the problem. You don't really want to be labeled in the anxiety catagory - then the possible reasons for the reactions may be overlooked. (Just my opinion - FOR WHAT THAT'S WORTH.)

[sj75]

i have to say i have always fought against being labelled anxious. He did say that the adenaline release becomes a vicious circle as the stress of illness and fear of relapse can worsen the adrenaline issues which in turn worsens the illness which worsens the stress (if that makes sense) apparently his treatment plan involves cbt and then after 6 months of that whatever symptoms are left are then tackled??

Ironically i ended up in a and e the evening of my appointment as i was itching all over (i had had this for a few days anyway) and the right side of my face became swollen (ironic or what) i had piriton and prednisalone which helped first off but the second dose of prednisalone made my throat swell so i havnt had anymore and ive been ill ever since with throat problems and itching. Im beginning to think im just a freak as even things im given to help me aremaking me ill.x

[sj75]

meant to say that after the negative skin prick test he did ask if i would eat a piece of chestnut whilst i was there (i declined).x

[issie]

Have you tried taking a Clartin and Tagament for the itching and noticed what you are eating or drinking when you have the worst problems? Try keeping a food diary and writing down what you are putting into your body and make notes as to how you feel - even hours later. You may see a pattern develop that you can figure out what is causing the problem.

I know someone else on here that is having the therapy - not sure how it's working for her. I know, you want your doctor to keep working with you. It's a hard decision. One thing that you could potentially rule out I suppose. If it helps WONDERFUL. If it doesn't - then you know it's not in how you react or process things but metabolical.

[sj75]

i definitely need to tackle the food issues and will start keeping a diary and eliminating certain foods.

Its so hard where the drs are concerned as its so difficult to get ones that are genuinely willing to help. When you finally find one who genuinely wants to help i think you end up going along with anything (within reason) just to try and keep them onside (does that make sense?)

[issie]

i definitely need to tackle the food issues and will start keeping a diary and eliminating certain foods.

Its so hard where the drs are concerned as its so difficult to get ones that are genuinely willing to help. When you finally find one who genuinely wants to help i think you end up going along with anything (within reason) just to try and keep them onside (does that make sense?)

TOTAL SENSE!!!