Sticky Blood-Hughes Syndrome Support

Food reactions. APS causes?

Hi, everyone. I'm sorry if this question has already been addressed here. I'm wondering if any of you with APS suffers with severe food reactions? I've read, with APS, that many people have developed food and / or environmental allergies when they never had any, or had very few, due to the autoimmune aspects of APS. I guess the allergies could be part of the "syndrome" part of APS?

Well, I've had a couple of food allergies my whole life: poultry and eggs. Later, in my 30's, I developed a severe reaction to nuts. Other than that, I could tolerate most foods pretty well. Then, as I got sicker with whatever I have (APS and other things), my intolerances to foods / chemicals have gotten ever so much worse. My food reactions have gotten so bad that, last year, I was put on a feeding tube. It's since gone and I drink the elemental formula now and try to eat a couple of foods every now and then, but eating is never without negative symptoms. I've had allergists watch my reactions to eating, and they say I'm not experiencing an allergic reaction, but they don't know what it is.

Does anyone else here have terrible reactions to eating? I'm not talking stomach ache or even diarrhea. I'm talking something that looks like a seizure with itching and flushing.

I'm being tested for ME, and I know that some people with ME have developed allergies to all foods, but I'm wondering if that's happened to any of you with APS?



8 Replies

hi -Linda , was where you read article on foods on a site that you could put up ,as i have had reactions, some severe, asked by dc s about food ? i had no answers for them, other than the vitamin K deal. my nutritionist called hughes in london, and they said not alot at this time? but i would be interested in reading what you found as we all can be different in symptoms and the effects of other things - thanks ---jet


Armentia A, Barber D, Lombardero M, Martin Santos JM, Martin Gil FJ, Arranz Pena ML, Callejo A, Salcedo G, Sanchez-Monge R. Anaphylaxis associated with antiphospholipid syndrome. Ann Allergy Asthma Immunol 2001 Jul;87(1):54-9


My allergies to nothing in particular got worse and worse, I do have five conditions in total, however I had poor adrenal function and have hypothyroidism, something often missed in autoimmune diagnosis, I am slowly treating it and allergies vastly improved. M


Hi Linda,

welcome to the group i hope you find the support and information you are looking for. I have not had any food allergies but as jet said it would be great iof you could tell us where you read the information of food allergies and APS!




I’m really sorry to hear how bad things have been for you. I have a similar problem with avoiding foods and like you have had tests which show that I am not ‘allergic’, although I know I am definitely sensitive and intolerant of them. My reaction after certain foods is a burning nerve pain in my skin which focuses in one place for about 24 hrs and may be to the left of my chest or at the top of my thigh, but may be a different place every time, and just keeps coming at about 30 second intervals. Its intolerable and keeps me awake all night, and the only consolation is that I know that it will eventually diminish and go away. It started with just a few foods but increased. I think my body reacts to (monosodium) glutamate and citric acid and other food preservatives as if they are neurotoxic! It seemed to be happening more and more often and in desperation I had a consultation with a medical herbalist who is a member of the National Institute of Medical Herbalists. She believed that I would benefit from treatment for a ‘leaky gut’ and said that my auto-immune problems may have developed because of a leaky gut. She prescribed a herbal tincture which I took for 6 months and slippery elm powder and a tea which included meadowsweet, nettle and calendula. It has helped alot and I am not getting the reaction as often as I used to. I was caught out last week with Tesco’s ‘thai green curry paste’ (I hadn’t reacted to Sharwoods) and about 6 weeks before by tinned tomatoes.

I’m also increasingly intolerant of chemicals and smells. I can’t stand the smell of paint, nail-varnish, perfumes, tobacco, dry-cleaning shops, shoe repair shops, petrol, gas and bleach. A mild reaction is coughing but the worst is a tight chest and difficulty breathing. This has all come on in the last few years and I was diagnosed with APS in 2008. I used to love decorating the house and repainting the walls and woodwork. All I can do is try to avoid all the things I cant tolerate and breathe fresh air as much as I can.

My rheumatologist isn’t interested because she is just treating me for the ‘sticky blood’ and circulation problems. I have 6 monthly blood tests and it is significant that my anticardiolipin antibodies have gone down to negative from being moderately high since I took the herbal medicine for 6 months so I believe there is a link between the antibodies and the reactions because the reactions were more frequent when the antibodies where at their highest. I hope you find a sympathetic medical practitioner that might be able to help you.


hi Linda -thanks for the site - copied it and will bring it to the atention of my dear Shawna [ diabetes and nutrition speacialist ] . she will persue it ,she is always looking for info to help me ,she even called huhges in london!! i wish alot of our doc s would have the drive to help, the concern , and the compassion this little lady has!!! it is great that we can share what we learn with each other. i know alot of my questions , and concerns come directly from this forum. it keeps my doc s and nurses on their toes!!!! thanks again to all --------------- jet


Hi Linda,

A couple of thoughts to share:

1, 3 years AFTER I had been diagnosed with Hughes I quite accidentally found out I was a Celiac (allergic to gluten.) My energy level soared, almost immediately when I went on a gluten-free diet.

(OK: Personal story -- skip this if you wish: I had been back to napping twice a day and going to bed at 8. I knew I was in an antoimmune chronic fatigue funk and that the symptoms would just have to worsen until a new, definitive diagnosis could be found. A musician friend of mine pleaded with me to try the Atkins Diet and advanced the theory that carbohydrates were the problem. I checked with my GP who said "You have nothing to lose. Give it a try. We'll expect to see you for an extra INR this week as your diet is going to change."

Last gluten day: 3 naps, go to bed at 8, have to refuse my college age daughters request to go hiking with her and the dogs.

First gluten free day (as in no toast for breakfast.) No naps, stayed up till 10, went hiking with my daughter and the dogs for a total of 4 miles with a 1200' elevation change and we would have hiked further but she had to get back home to pack for her trip to Scotland (junior year abroad at Uni in Glasgow.)

Gluten free day 2: No naps, stayed up till 10 again, cleaned the entire house in a whirlwind of activity, drove daughter to airport and had energy to spare to ride my bike to the top of 4 Mile Mountain (without stopping to rest on the way up. (Again, same 1200' elevation change.)

Gluten free day 3: Woke up convinced that my astonishing energy levels had to have something to do with autoimmunity. Read the book "Autoimmune Connection" cover-to-cover (without falling asleep in mid sentence) and concluded I had Celiac. Called my GP, who concurred. Subsequent blood tests showed normal IG factors and normal hematocrit and hemaglobin and Ca levels for the first time since I was 4 years old!

Thought 2: The "leaky gut," caused by a severe or low-level food allergy is often the first dominio to fall in developing an autoimmune illness. Food which is not supposed to leak into the blood stream does and the immune system, quite rationally actually, goes nuts (often literally as well as figuratively.)

You might want to ask your doctor or nutritionist about going on a very restricted diet for some weeks/months, then slowly adding back this or that food so you can establish what you are allergic to now. Such a diet usually eliminates gluten, milk and dairy, nightshade vegies - tomatoes, egg plant, bell peppers, caffine and nuts.

Good luck, and keep us posted.


Hi. thanks for the suggestion but have been gluten free for years. In fact, have been pretty much food free for years. I had a feeding tube put in last year and have lived on an elemental formula now for two years.

Thanks anyway. Linda


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