I have been wondering for a while if I could have MACS.
Last year I was diagnosed with a Raw Pecan allergy, borderline brazil and salami allergy through raw food skin to skin prick testing and given epi pens. My immunologist at the time did not want to risk it as I have asthma and history of wheezing after peanuts.
After being diagnosed with PTH insufficiency and hypocalemia otherwise know as hypoPARA (non surgical) I was told to increase my calcium intake in which i realised the more cheese I ate the more my mouth burned so i was sent back into immunology. Another immunologist suggested to repeat the skin testing for nuts again (using the droplets not raw nuts but droplets) and told this time I did not have a nut allergy but histamine intolerance but did have a mushroom allergy. Trying to reduced my histamine through food and seem to be itching more if thats even possible! It is so hard to follow also.
I did ask if i no longer needed my epi pen but said to keep hold of it for a while and see what my dr says in a few months. I am not sure my GP will be able to make that decision or that responsibility as I thought that would be down to a specialist consultant - unless i have not been discharged as still waiting for clinical letter.
I also have spontaneous urticaria and told the immunologist about that water sets me into hives and not the heat of water. I did have a hive reaction the the negative saline skin prick.
I am a cross with myself for not asking further as the GP did note in the referral for that I was querying for MCAS. I just though that the consultant didn't mention it he thought it was not a possibility.
I also have benign hyper mobility and lots of medication sensitivities. Told to take anti histamines if needed but been recommended a drowsy one which i can not take as i drive. Certirizine makes me eat everything and loratadine effects my mood.
I also have autism, eczema, OI, on the urology waiting list for suspected uti’s. I did not meet the criteria for elher danlos. I also gave thyroid antibodies with current normal thyroid.
Any thoughts would be appreciated!
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Owl84
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sounds rather like a MAST cell issue could be behind it all. There is a widely accepted association between hypermobility and mast cell issues but no causal link has been discovered as yet.
Where do you live? I got diagnosed at Guys and st Thomas’s in london. Dr Grattan in immunology . They check tryptase level and do a genetic test too which may show a mutation which causes mast cell to proliferate.
But I am afraid to say there is no treatment other than antihystamines daily. Have you tried fexofenadine?
Mast cell flares can make you anxious and depressed so are you sure it’s the loratadine affecting your mood?
Some form of relaxation and calming helps. E.g tai chi, deep breathing ( in for 4 out for 6) helps. I am looking for a meditation group.
I did wonder about the antitamines if they had been really affecting my mood.. My hypopara was undiagnosed at that time also which affects mood and is still unstable and need to be put onto another medication. It could be like you mentioned the conditions could be causing the mood fluctuations.
Guys hospital recommend that when you try a new medication you stick with it for a month before deciding if it is helping or not. And a they also advise making only one change at a time. So you can judge the impact of starting or stopping a drug more accurately.
It is easy to assume a symptom is caused by medication when actually its a reaction to something else such as an allergy or a stressful situation, a viral infection or even getting too hot or too cold. It is a very trying condition and quite isolating as not many people understand it. I think I mistook a reaction to stress for a medication reaction and stopped taking something immediately, still not sure if i got it right!!!
There is a wonderful web site about MCAS and what to do about it that was started by someone who was bedridden for years until she figured it out. Her goal is to help as many people as possible to get their lives back and live normally. She still has to watch what she eats but can even go to restaurants now if she takes some of her own food. This site has the best lists I've found of both high and low histamine foods as well as the basic concepts of what to avoid, so that you can figure out what is safe to eat. It also has inexpensive courses you can take, or if you can afford it, very individualized help from the coaches on the site, who have also overcome their own mast cell problems. There is emphasis on the link between mold exposure and MCAS, which many are not aware of, plus direction on what to do about it. I don't remember if links are allowed here, but if so: mastcell360 dot com. This is a wonderful site by caring people. The site is US-based but you don't have to be in the US to utilize it.
Hi. MCAS and autoimmune thyroid patient here. Are your thyroid levels optimal for you - not just normal/ in range according to the GP/ Endo? The reactions you describe can also be caused by hypothyroidism ( often caused by autoimmune thyroiditis). I suggest you join the Thyroid UK forum on Health Unlocked ( if you haven’t done so already) - ca 130‘000 members and growing - with very helpful, supportive and knowledgeable members. If you have thyroid antibodies, have you been diagnosed with Graves or Hashimotos? There is an overlap with MCAS and thyroid disease.
The thyroid antibodies were found when my first private endo ran tests for my hyopPARA. I have been confused about what they are going to do about it as all they have said it ‘your thyroid is normal and cant treat it yet or ‘the thyroid antibodies do not mean anything”.
I am on a waiting list for a new endo as i asked to changed to someone who really understood hypoPARA as the fight to get diagnosed with this condition as been a long one. So the thyroid antibodies have been left on a back burner.
My bloods were:
TSH - 1.35 mIU/L (0.38-5.5) 08/12/2023
Thyroid Screen Medicheck 02/01/2024
• TSH 1.890 mIU/L (0.27- 4.2)
• Free T3 5.1 pmol/L (3.1-6.8)
• Free Thyroxine 15.6 pmol/L (12-22)
Thyroid Antibodies
90 iu/ml. (0.0-60.0) 08/12/2023
64 iu/ml. (0.0-60.0) 29/01/2024
Family history of graves disease. I had boarderline ANA once too.
It will also help when they find the cause of my hypoPARA (autoimmune or genetic) as there are some cluster of autoimmune conditions which include the thyroid conditions. I had just read about the link between McAS and thyroid disease.
Hi, My daughter has MCAS and can't tolerate anti histamines. Cetirizine and Loratadine affected her mental health. They made her agitated and anxious immediately. Always read the patient information leaflet. Antihistamines cause lots of mental health side effects. Trust your instints. If you start a new tablet and experience new symptoms it will be the tablet.
She may be ok with quercetin; if it tests ok, I had significant benefits from 1 gram 3X a day. Less than that didn't do anything. I took the Jarrow brand but any clean brand, if she is ok with quercetin, would have the same effect. Drugs always have additives in them that many with MCAS are not going to tolerate.
thank you so much - the same happened with motelukast as well. I sound the same as your daughter and really sensitive. Can your daughter tolerate anythig to help?
Over two years she has trialled everything including Ketotifen, Sodium Cromoglycate and Rupatadine. They effect her mental health, sleep and give her unbearable joint pain. She can't even tolerate supplements. Recently she tried the short acting Acrivastine, brand name Benadryl which you have to take three times a day. She seems to be tolerating it. It doesn't have the same side effect profile as the others. I suspect it's H1 receptor antagonist action is not as potent as the others but it seems to be helping. Our theory is that some antihistamine is better than no antihistamine. She also has a very strict low histamine diet and takes a Diamine Oxidase capsule before eating food.
I am glad your daughter as found something that helps a little. I am struggling sticking to the low histamine diet but only just been diagnosed. I think thats the antihistamine the immunologist told me to try but didn't realise it was a drowsy one and was worried as I drive. So just going without anything at the moment.
The name Benadryl has historically been associated with two different kinds of antihistamine. When Immunologists suggest Benadryl they usually mean Diphenhydramine. This is an old first generation antihistamine which has lots of side effects and is very sedating. The Acrivastine is a second generation antihistamine and is classed as non sedating. It carries the name Benadryl. You can buy it in the supermarket. If you get desperate it's worth a try. It has the lowest side effect profile of all the antihistamines.
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