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!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

good morning @alleah . You’ve seen a dermatologist, but they have no answers. And a cardiologist for your heart. But, no answers. Have you also seen an ophthalmologist for your eyes? How frustrating. Have your doctors suggested going to a major medical center? A group of doctors, together, might be the answer finders that you need.
What have you done so far to control the itching and irritation?

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@becsbuddy

good morning @alleah . You’ve seen a dermatologist, but they have no answers. And a cardiologist for your heart. But, no answers. Have you also seen an ophthalmologist for your eyes? How frustrating. Have your doctors suggested going to a major medical center? A group of doctors, together, might be the answer finders that you need.
What have you done so far to control the itching and irritation?

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Good morning @becsbuddy thank you for the answer! The ophthalmologist suggested corticosteroids that I already use. The doctors I have seen didn't suggest any further testing or specialist. I had to search for testing and specialists on my own. The dermatologist was done with me in literally 5 minutes so it's a bit frustrating. I'm not from the U.S. but the Czech Republic so the health system is probably a bit different here. I go to a centre that has almost a hundred doctors under one roof but it's not like they work or speak together about patients. They work only with information the patient provides them. So I try to connect the dots from all the examinations and testing.

I try to control the itching and irritation with antihistamines that seem to work. The swelling gets better with cold compresses and also helps with an itch for short time. Generally, a low histamine diet seemed to help with itching but I'm not 100 % sure about its connection to my issues.

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Hi @alleah, your English is beautiful. You might find this related discussion to be useful. Members shared tips and @alexsteph found a solution to her red eye problem.
- The skin around my eyes suddenly red: What can I do? https://connect.mayoclinic.org/discussion/red-eyes-surrounding-skin/

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I am having trouble after being referred to Mayo for a food allergy of unknown origin. The allergists has done all the test back here with no results. I have been going on 4 years of trying to find out why I can’t enjoy the foods I have been eating all my life. I don’t understand why or what triggered my Bobby to just suddenly respond with reactions any where from 30 minutes to several hours when it starts. First the nose and face starts to itch within an hour I have to start in on taking Benadryl ( can take up to 30 during this time) with no help. The nerves inside me start to react first that become very painful before the rash starts. The rash usual starts on my face going down my neck to chest before all over. It is very painful and itchy no matter what I try. Ow my breathing is being involved and I start to panic. So far y inhalers work but as of the last one, I had to ask for an epi-pen just in case.
Each time I have a reaction it keeps getting worst lasting up to 4 days. From here I become bloated and very comfortable and unable to eat anything. I just drink fluids this day. Then I get diarrhea that last most of the day. My whole body reacts to something in 99% of food.
I can’t just go any where to enjoy retirement at this time because I don’t know how to prevent these reactions. I know something I’m my body is not working/ or is working overtime against what I eat. I can’t go to a restaurant with friend and family because of how they know I react.
Something is terribl

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Some thing is terribly wrong with my insides and no one can find out why back here. All I ask is for guidelines and suggestions on what I can do back here to find out. Can you help me in anyway possible?

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@novakp52. Boy, you have really been dealing with a lot , haven’t you. I don’t know if this is an autoimmune disease, but it sure sounds like allergic reactions. Have you been working with your primary care doctor? Is she the one who suggested that you get in touch with Mayo Clinic? Did you actually go to Mayo Clinic? What specialists have you seen? That’s a lot of questions, but id like to point you in the right direction.
Would you mind telling me where you live?

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@alleah

Good morning @becsbuddy thank you for the answer! The ophthalmologist suggested corticosteroids that I already use. The doctors I have seen didn't suggest any further testing or specialist. I had to search for testing and specialists on my own. The dermatologist was done with me in literally 5 minutes so it's a bit frustrating. I'm not from the U.S. but the Czech Republic so the health system is probably a bit different here. I go to a centre that has almost a hundred doctors under one roof but it's not like they work or speak together about patients. They work only with information the patient provides them. So I try to connect the dots from all the examinations and testing.

I try to control the itching and irritation with antihistamines that seem to work. The swelling gets better with cold compresses and also helps with an itch for short time. Generally, a low histamine diet seemed to help with itching but I'm not 100 % sure about its connection to my issues.

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@alleah I just wondered if anything has gotten better for you. Did the doctors come up with any answers for you?

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This sounds much like what I go through. I was diagnosed with angioedema. Also get face swelling, hives, and itching. I take a daily antihistamine. When I was first diagnosed I also was given Prednisone and Benadryl to get the swelling under control. It is always there at the surface but is better some days and worse others.

REPLY
@becsbuddy

@novakp52. Boy, you have really been dealing with a lot , haven’t you. I don’t know if this is an autoimmune disease, but it sure sounds like allergic reactions. Have you been working with your primary care doctor? Is she the one who suggested that you get in touch with Mayo Clinic? Did you actually go to Mayo Clinic? What specialists have you seen? That’s a lot of questions, but id like to point you in the right direction.
Would you mind telling me where you live?

Jump to this post

I have started with my endocrinologist thinking it was connected with my hypothyroidism who ran some test with no results.
My primary advised I talk with an allergist and did nothing.
I have worked with my allergist since then. She did all the skin testing with no results. We have tried several antihistamine. She did lab work for testing IgE levels but still have had no findings. I am currently trying 1 singular with 2 Zetex am & pm. for a month. I did have a reaction about a week ago, not as severe( only 15 Benadryl) but just as long.
I just want to find out why it is happening and treat it so I can get out into the world again without worrying when it will happen and destroy the vacation for everyone especially my husband.

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@novakp52

I have started with my endocrinologist thinking it was connected with my hypothyroidism who ran some test with no results.
My primary advised I talk with an allergist and did nothing.
I have worked with my allergist since then. She did all the skin testing with no results. We have tried several antihistamine. She did lab work for testing IgE levels but still have had no findings. I am currently trying 1 singular with 2 Zetex am & pm. for a month. I did have a reaction about a week ago, not as severe( only 15 Benadryl) but just as long.
I just want to find out why it is happening and treat it so I can get out into the world again without worrying when it will happen and destroy the vacation for everyone especially my husband.

Jump to this post

@novakp52 It certainly sounds like you’re getting nowhere and i certainly don’t blame you for worrying. You’ve been working with an allergist—have you seen a rheumatologist? Their specialty is figuring out all these strange symptoms. See if there is a large medical center near you and then ask for an appointment with a rheumatologist. This has to be taken care of so you can start living again.
One question: you say that when you have a reaction, you take “only 15 Benadryl.” Do you mean 15 tablets of Benadryl ? Or is the dose 15 mg ?

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