Hi all, just wondered if any of you suffer with food allergy/anaphalaxis?
My daughter is at the moment going through the is it or isn't stage of diagnosis,she has in the last year had a few episodes of anaphalaxis, due to what she though was food related, but she can't be sure, when she saw a renal consultant he said it could be related to vasculitis not food allergy.
I must add ,she hasn't been diagnosed with vasculitis but is being treated at the moment as having systemic lupus and possible ms.
just wondering what experiences you guy's have with this?
Thanks in advance Sandy
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nanny4
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I have food allergy which can get to anaphalaxis I also have Unclassified Vasculitis, MCTD, raynauds and Pituitary problems too. I was diagnosed with food allergy 18 years ago and although I have had the symptoms and problems connected to vasculitis and other autoimmune diseases this wasn't connected until I saw my current Rheumatologist until then everything was treated separately the only thing I am told at the moment is that I do not have Lupus. Not sure if this helps
Thank you Tracey,what a nightmare people often have,my daughter has fine through so many dxs possibilities,she was told a year ago she had lupus,then a few weeks ago she wad told she Disneyland have it,but they are treating her as if she has systemic lupus as the meds she is on are used in partial treatment for other autoimmune disease.
I don't know what, if any, medication your daughter is on. If she is on immuno-suppressants, like I am, she would be unlikely to 'react' to much; I hardly even react to histamin, these days!!
Yes she could have allergies, like anyone can, however most of them can be 'found out' by a skin test; so I strongly recomrnd that you get these done, as soon as possible.
Hi Andrew she is awaiting allergy testing,she had it last year,all over her back,patch tests, it pretty much showed she was allergic to everything,and st that point check had seriously high histamines levels,she often had to take 8 antihustamunes a day,since she has been on methotrexate she. has less severe reactions but still gets them,ad I said my daughter and one of her 3 year old twins are both awaiting mire indepth allergy testing.
When she saw a renal consultant who was convinced she had multi system vasculitis,he said it may not all be food allergy when she suffers anaphalaxis,it could be a reaction which happens due to vasculitis.
She is on a maintenance dose of 15mg steroids so her skin reactions seem to be kept at bay most of the time.
I have episodes of anaphylactic reactions and angiodema to an unknown cause. I suppose over the last few years I have had about 5 of these extremely serious reactions with numerous epiodes of what appeared to be allergic reactions - some minor and some more serious. They can come anytime of the day or night and are not linked to anything I am doing or eating. I have carried an epipen for some years now. When I first went to the allergy clinic they said the cause was idiopathic (i.e unknown cause) and discharged me. Within the last month I have been to a different allergy clinic and they have said that these are not allergic reactions but due to my illness. My initial diagnosis was Churg Stauss Vasculitis but has now changed to Undifferentiated Connective Tissue Disease. The allergy specialist said he believes that connective tissue disease would not cause such reactions and that these are vasculitic in nature. He feels he is unable to help me so has referred me back to the rheumalotogist for treatment. I go to the hospital next week,so we will see but I feel like I am back to square one in my diagnosis and in finding a way forward.
Hi Suzie MC, i do feel for you,my daughter has ,as i have said ,quite a few diagnosis.
It must be so frustrating for everyone who does not have a firm diagnosis,what concerns me for my daughter is while all the discussions go on about her diagnosis, damage is happening,she had various scans 8 weeks ago which showed that with her treatment ,the swelling on her brain and spinal cord has finally gone down,now last wekks scans did not show any swelling on the brain or spinal cord but something elsse has been found, she has to wait until Thursday to find out what it is.
If by Thursday when she has seen both consultants,a firm diagnosis is not achieved,my daughter is going to demand! a refferal to Dr David Jayne,at Addenbrookes Hospital, as John gave me all the information about the multi-diciplinary lupus and vasculitis clinic that he runs.
I do hope you appointment next week goes well,please keep me posted.
Thank you for your comments. I am fortunate in that I have nothing as serious going on like your daughter but I do suffer from multiple problems, which can be difficult to live with. I have learnt after many years that you do have to be proactive with the doctors and with tests. A specialist like Dr Jayne maybe the way to go. When I was first diagnosed a lot of the medical profession didn't even seem to know about it. That situation has improved but these auto immune conditions are very complex and some doctors even with good intentions do find them hard to deal with.
I do hope that your daughter is able to get a definitive diagnosis and the appropriate treatment,which may will help her anaphylaxis and what seem to be multiple problems.
I will certainly keep you posted but cannot say I am hopeful of a ready fix. Everytime I have mentioned these reactions at my rheumatology appointments, the response has been 'Oh dear. Are you still under the allergy clinic?' Still onwards and upwards.
Yes I see what you mean,my daughter had seen a dermy who gave het epi pens with no real explanation,but she has seen a couple of dermy since and is awaiting yet mire allergy testing,she also ,amongst all her other meds has to stay on a maintanance dose of steroid for the long term,otherwise her skin erupts with painful sores.
She has heart,skin,kidney,neuro problems.
Do you mind if I ask what problems you have?also what lead to your previous dxs of vasculitis?
My situation is complicated with some conditions not necesarily linked to my auto-immune condition. In 1993 I fractured my femur and over 2 years had 6 operations to correct things. After that I began to feel ill and my GP agreed that something was going on but nobody could work out what. I just felt unwell and had a lot of pain. In 1996 I started getting pains in my finger joints and was given a provisional diagnosisof Rhematoid Arthritis. I also had continous sinusitis and then put on 2 stone in one week with fluid retention. It was deemed to be a flare up of the RA I was treated with steroids. 2 years later I was having trouble breathing and they found abcesses in my lungs At first they thought it was Wegeners but then I was told it was Churg Strauss Vasculitis though the blood tests were not definitive When I changed consultants and hospitals, he changed my diagnosis to undifferentiated connective tissue disease although now with the allergy specialist saying my reactions are more vasculitic in nature and do not fit in with connective tissue disease - who knows?
In addition to the above, I do have mild asthma and slight fibrosis of the lungs which is linked to my auto-immune illness I have something called paroxsmal atrial fibrillation which in layman's terms means an intermittent irregular heart beat, borderline osteoperosis (not helped by the steroids) which has caused stress fractures in my feet, intermittent gastric problems from all the drugs and severe osteoarthritis of the spine with nerve involvement in the neck area. Of course there are the allergies as well.
I have learnt to live with my conditions and to manage them on the whole. In the main, I get a lot of pain and suffer from fatigue. I am lucky not to have many of the complications that your daughter and so many people seem to have. I really do think with the complexity of the symptoms your daughter is suffering from, the specialist at Addenbrookes would seem the best way to go. He will be able to view the whole picture.
Hi Sue,thank you so much for your input,it is much appreciated ,my daughter has really been unwell on and off all her life,she was under the peadiatrcians from birth to 12 when I said enough is enough,I remember her consultant getting excited when my daughter finally put on enough weight that she finally was just classed as underweight and not seriously underweight,idiot,it was because she was on continous oral steroids for her worsening asthma,it was nothing he had done.
I went to my g.p and told him, no longer would my daughter be seeing him.she then saw a specialist who said she had ME,she had at that time an irregular heart rate,no explanations,she often felt it missing a beat.
She also saw a gastro dock who said her bad acid and the runs,was caused by a hiatus hernia,also she had bad esophegal ulcers.
Her heart consultant first saw her 5 years ago,she had tests and no functional problem was found,but he said it was neurological,and to be aware that it could possibly be a serious problem one day out of the blue.
She had always suffered with severe ear and sinus infections.
She had a lot of problems where all of a sudden she would get stomach ozone,become clammy and be on the verge of psssing out.
She suffers with severe water retention,and bless her,her list goes on and on.At present the brain,spine heart and kidney scans are to keep dm rye for any change.Unfortunatley change in her brain scan has been found,she will know more on Thursday.
Sorry for rambling.
Hope all goes well for your appointment,take care,Sandy.
I have vasculitis and have wheat intolerance and not very good with milk products either.....maybe try staying away from wheat for a bit and see how it goes or try to find someone who will do proper allergy testing.....good luck.....
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