Undiagnosed: Allergy symptoms without being allergic. Ideas?

Posted by alleah @alleah, Feb 6, 2022

Hello everybody,

I'm looking for ideas for the unexplained condition that I have had for the past half a year. Please, excuse my English since it's not my first language. At this point, I'm out of ideas, tired and hoping I might find someone who had a similar experience and might know what's going on.

Symptoms:
Eyelid swelling, red itchy rashes over my eyelids, bloodshot and itchy eyes, sneezing, coughing, throat ache and runny nose. Occasionally I have rashes on my body and face (hands, fingers, shoulders, chest, arms, legs, neck and forehead) and difficulty breathing. Recently I also experienced something that seemed like an asthma attack. It got better after 2 hours outside in the fresh air and two antihistamine pills.

It can get suddenly better, to the point that I'm almost completely okay to absolutely terrible in one day. Antihistamines seem to work the best.

How it started/other health issues:
It started along with the common flu and got terrible in one week. I was tested negative for covid. During this time I also struggled with sudden rapid heart rate – 140 beats per minute while being still. Normally I have around 70 beats per minute. This would happen at least 4 times a day for several minutes. Due to family anamnesis, my heart was checked and the results came out normal. After a few months, the rapid heart rate was gone on its own. A few months before the condition I had face shingles and herpes simplex on my lip multiple times during summer. I'm also watched for Hashimoto's thyroiditis. I have borderline results so I don't take any medication. I had eczema through my whole childhood and teenage years but I got rid of it 10 years ago.

Doctor examination:
When I visited my dermatology doctor I've been prescribed very mild corticosteroids that help with the redness but nothing else. I was examined and tested for allergies and the results were that I'm not allergic to anything.

What I already did and tried:
At first, I avoided for several weeks: sweets, chocolate, citruses, tomatoes, gluten, lactose, anything pre-made, alcohol, caffeine, high-histamine food in general, spicy and sour foods. It didn't make any difference. I continue to avoid or restrict all of these except gluten and lactose, just in case. What seemed to helped a bit is a low histamine diet but I'm not 100 % sure about the connection.
I focused on getting rid of dust mites. I exchanged the bedding, wash everything at 60°C, use anti-mites cleaners for mattresses, got rid of the carpets etc. I also exchanged the laundry detergent and stopped using cosmetics for 2 months but nothing resolved the problem.

I don't drink or smoke. I don't own a pet. I'm a sportswoman, I exercised up to 5 times a week before this condition and I eat healthy for most of my life. Except for this health struggle, I feel the happiest I've ever been in my life.

Thank you for reading this exhausting description and I'm looking forward to any answers!

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novakp52 | @novakp52 | May 24, 2022

I got my test results back yesterday. ANA serum <1:80. The Endocrinologist was not concerned about it at all. Going to take it to my Allergist tomorrow.
At this point, I am tired of getting no answers.
I want to enjoy a “normal life” again. There is a holistic center in town that I think I am going to look into. Maybe with a nutritionist or something to figure out how I can live a life again and enjoy food. There has to be something out there that can let me live like a diabetic, gluten free, or what ever else live a life. I have a general idea of some and most food ad ingredients react to me.
I would love to find something that will block histamines over load like insulin for a diabetic. If there is anyone who know of anything, I would like to hear.
I retired to enjoy traveling and enjoying the food of each city that goes with that destination.
I will take with the allergist about this results.
I finally got COVID on May 11 th. Took the cocktail drug but on the road of getting over it. The cough and drainage combined with seasonal allergies in full blow at this time doesn’t help. ( Northern Indiana) so I don’t know if anything will change. I just know I wasn’t to enjoy graduations, wedding and family get togethers and not have to have my Benadryl and Epi-pen in hand.
I WANT A LIFE AGAIN THIS SUMMER!

anoreen | @anoreen | May 25, 2022

I can relate with you on some your case. Diagnose with seasonal allergic rhinitis, chronic urticaria and some unknown sickness . I cut down chocolate or sweet mango since I discovered that it can trigger something on my throat that it’s hard for me to breath. Bedding change every week and no carpet floor. As of now I’m still monitoring my daily activities and food intake that can trigger my other allergy symptoms or the unknown. Normal ANA and negative for food allergies. I’m cutting down stress related wither it is mental , emotional or physical. I’m taking allergy as my maintenance medication aside from my other medication.

cantek | @cantek | May 26, 2022

Don’t move to Florida if you have problems with allergies and wait until the pollen count is down in the afternoon to go outside.
I have two autoimmune diseases and a very high allergy to grass which affects my lungs. It’s all about listening to your body and seeking alternatives.
Also find the top doc at Mayo, not just who they assign you. Do your research on these MD’s.
Accupuncture?

kt8 | @kt8 | May 27, 2022

In reply to @novakp52 "I got my test results back yesterday. ANA serum <1:80. The Endocrinologist was not concerned about..." + (show)

I will echo the idea of exploring mast cell activation syndrome. Try a low histamine diet. There is a site Mast Attack that is full of info and resources. Histamine blockers are H1 or H2 and it can take time to sort it out.
You didn’t mention whether you had any rashes.
Sorry you are struggling. Hand in there and keep pursuing answers.

that_girl | @that_girl | May 27, 2022

Hi! I had similar situation. Have you investigated environmental causes? I mention this because after years of elimination diets, allergist, and various doctor visits for hiving it turned out there was mold between the walls in the office of our building. I would notice that if I was gone from the building for four or five days straight, the symptoms would mostly clear up. Each time I returned to work it would worsen. (In hindsight, it would worsen when I would have to work most of the day in the back office.) Meanwhile I had been blaming it on food and/or stress. Eventually I wound up in the ER completely covered in hives, an itchy tongue, and trouble breathing. After being treated I was put on two histamines (1 and 2) and a prednisone pack. Three doctors (ER, Primary, and neighbors) all said it indicated something that I was contacting in my environment...probably mold exposure. I moved to a different location and after a month I was completely hive-free.

alleah | @alleah | May 27, 2022

@becsbuddy @helennicola @cbozzolo28 @gardeningjunkie @anoreen @cantek @that_girl

Hello everyone, thank you for the concern and all the ideas and recommendations! I replied to all of you at the end of this long update. It's been a while since I posted any update so here's one with some "nice" pictures of the progress included:

"Allergy" like symptoms got suddenly better on their own – the sneezing, runny nose etc. Although, the skin rash got worse from March to April. Red, circle-like rash patches started appearing on my neck, chest, fingers, wrists and randomly on my face. The rash around my eyes would disappear and then show up again. But right now I'm almost rash-free!

One day I woke up with a terribly swollen face and a rash all over my face (picture of that not included since it was really bad). I was sent by GP to an emergency. I got glucocorticoid shots, corticoid creams and antihistamines. Also during that time I felt pain in my abdomen and my fever spiked to 103 F. I was checked by a doctor a few days later but the pain was already gone and the fever too. Then it got better but new symptoms appeared.

I started to notice in March that I'm terribly tired and feeling dizzy. I was sleeping about 12 hours a day but it didn't help. I also started to feel pain in my joints – especially in my fingers, wrists, ankles and a bit in my knees and elbows. It started lightly but then it would start waking me up during the night. At that time I also noticed that I probably have Raynauds. I was used to having very cold feet and hands but I never thought about looking at my feet when they felt numb. But once I did notice white numb spots all over or on the opposite, red and very hot spots. That's when lupus came to my mind. I thought that at least I don't have a fever that would fit into a picture of lupus and out of curiosity measured my body temperature – 100 F. I have had a body temperature between 98.5 to 100.5 F for about 20 days per month since then.

GP was concerned so she send me to get a blood test for rheumatism factor, ANA etc. These came out as negative. Although I got positive on anything Epstein Barr virus-related but not anything alarming I guess. I already had mononucleosis and I wasn't further explained what these results meant for me.

Only these I can tell for sure from the tests and checks:
Hashimoto thyroiditis
Mild anaemia
Low vitamin D (even though I took supplements for that for months but now I have very strong ones)
Possibly Raynauds

@helennicola That you for the suggestion of Sjorgens – that also crossed my mind! I've been to an ophthalmologist during the time I started having issues with the joints and fatigue. The doctor thought mainly about lupus and after checking my eyes she confirmed that I have very dry eyes and prescribed steroid eyedrops. I got also tested for gluten and I'm not celiac.

@cbozzolo28 It almost seems like you knew exactly where it was heading before it started to unravel! 🙂 I'm now waiting for an appointment with a rheumatologist.

@gardeningjunkie I did have the patch testing with patches all over my back for several days but it didn't resolve it. I was positive for irritation by kathon which is not in any cream/cosmetics/cleaning product I use. But it is great to know that regardless!

@anoreen Great that you've figured out what could help you! I cut down on almost anything – gluten, lactose, chocolate, fruits etc. for a few weeks but nothing much happened.

@cantek Thank you for the tip! I'm from Europe so Florida is off my reach 🙂 I couldn't survive the heat and humidity in Florida though anyways! Hopefully, you're doing well now when the pollen season is at its peak. Even here, I feel that I react to pollen because of its high amount during May even though I'm not allergic to it.

@that_girl Sounds terrible what you've gone through. Great that you're now in a mould-free space. I thought about that too though. I did an experiment because of that – stayed for a week at my place, at my boyfriend's place, at my mom's, and tried not going to an office for 2 weeks but nothing changed, however.

novakp52 | @novakp52 | Jun 3, 2022

In reply to @novakp52 "I am having trouble after being referred to Mayo for a food allergy of unknown origin...." + (show)

Is there a connection with raw carrots and soy lithium allergies?

trishh | @trishh | Jun 4, 2022

In reply to @novakp52 "Is there a connection with raw carrots and soy lithium allergies?" + (show)

Have you been tested for Mast Cell Activation Syndrome? I just got a possible diagnosis.

novakp52 | @novakp52 | Aug 3, 2022

I finally had enough. Went holistic and after one blood work up after Listening to me and my history.
I GOT ANSWERS!
I am allergic to soybean, olives, and wheat besides multiple additives in food! Still working on healing but I GOT ANSWERS that allergist couldn’t.(or doctors)
Best money I have spent.
Now I can make adjustments to my diet and need to heal my insides to get recovered.
Still trying to understand it and still learning what is correct. I listen to my body in what I eat.
I am not insane! I am not making it up. It is not a mental condition! I am on the right path finally since 2018! All in less than 4 months at the new holistic practice.
Thank you for the one who suggested trying it.
JOY. HAPPINESS. LIVING AGAIN

rashida | @rashida | Aug 4, 2022

@alleah - my daughter started out with eczema up to the time she was a teen, then all kinds of problems started, including severe anaphylactic allergies.

Your mention of exercising leads me to wonder if your condition, although not necessarily related to allergies, could produce your symptoms because of the exercising? My daughter triggers hives from sweat on any type of exertion, which lead to anaphylaxis in her case.