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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.

gardeningjunkie | @gardeningjunkie | Apr 24, 2022

Have you had the 5 Day Extended Patch Test for Allergic Contact Dermatitis, ACD, a form of eczema? I had eyelids that looked like yours. Now I know what to avoid.

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Apr 24, 2022
In reply to @novakp52 "I have dentures and no implants in my body. I tried allergy shots for common allergies..." + (show)
@novakp52

I have dentures and no implants in my body.
I tried allergy shots for common allergies but as it got stronger, I started getting headache from them. 😔
Most thing I react to is in most processed foods, oils etc.
What is Environmental allergist?

Jump to this post

@novakp52 Here is the link to the Environmental Allergy specialists where there is a provider search. https://www.aaemonline.org/

Basically these doctors try to prevent problems rather than treat symptoms, and they may look at the person as a whole which can include thyroid function, allergy shots, hormone replacement, preventing deficiencies, exposure to environmental things like molds that cause health issues, reactions to foreign substances in the body from dentistry or surgical implants, etc.

You can find a lot more at https://www.ehcd.com/

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Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 24, 2022
In reply to @novakp52 "I am going to have an ANA done Tuesday. I am on hydralazine 50mg daily. How..." + (show)
@novakp52

I am going to have an ANA done Tuesday. I am on hydralazine 50mg daily. How long should I be off if it prior to the test so I don’t get a false positive?

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@novakp52 Did your testing lab give you any direction? Or your rheumatologist? I wold ask them, as you may need to clear the hydralazine out of your system before the test. I read somewhere that it can skew the results up! I get it if you need to reschedule!

Are you being testing for Systemic Lupus, or drug induced lupus?
Ginger

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 25, 2022
In reply to @novakp52 "I have started with my endocrinologist thinking it was connected with my hypothyroidism who ran some..." + (show)
@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.

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Hello @novakp52

You mentioned having seen an allergist. I'm just wondering if the allergist was also an immunologist? Your problem seems complicated and an immunologist might be helpful in trying to come up with some answers.

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1 reply
leen | @leen | Apr 25, 2022
In reply to @leen "This sounds much like what I go through. I was diagnosed with angioedema. Also get face..." + (show)
@leen

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.

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Since being to Mayo and seeing the allergist, I am now on an antihistamine 2 times per day. It helps but still some days better and some worse.

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novakp52 | @novakp52 | Apr 25, 2022

Shots ended up giving me migraines on high doses. So I had to quit.

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novakp52 | @novakp52 | Apr 25, 2022
In reply to @gingerw "@novakp52 Did your testing lab give you any direction? Or your rheumatologist? I wold ask them,..." + (show)
@gingerw

@novakp52 Did your testing lab give you any direction? Or your rheumatologist? I wold ask them, as you may need to clear the hydralazine out of your system before the test. I read somewhere that it can skew the results up! I get it if you need to reschedule!

Are you being testing for Systemic Lupus, or drug induced lupus?
Ginger

Jump to this post

No, not for lupus. I have an undiagnosed food allergy that started out of the blue and getting worst over the past 5 years. Just trying to work at a puzzle. Just wondering if connected with my thyroid in any way.
I had a great doctor in Elkhart, In. but he retired. His replacement I am questioning and may have to find another one who gets to the base of each problems. My first one, had everyone jumping when he asked for something. Never seen my records or test sent to a doctor when requested. Miss him completely.

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novakp52 | @novakp52 | Apr 26, 2022
In reply to @hopeful33250 "Hello @novakp52 You mentioned having seen an allergist. I'm just wondering if the allergist was also..." + (show)
@hopeful33250

Hello @novakp52

You mentioned having seen an allergist. I'm just wondering if the allergist was also an immunologist? Your problem seems complicated and an immunologist might be helpful in trying to come up with some answers.

Jump to this post

So far we have not gotten to the answers. That was one reason I reached out to Mayo. So that is why I am trying to work with my endocrinologist to help with diagnosis. The allergies started the same time my hypothyroidism started.

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JSV0052 | @sjv1968 | May 5, 2022
In reply to @novakp52 "I am having trouble after being referred to Mayo for a food allergy of unknown origin...." + (show)
@novakp52

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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Hi Novakp52,

It sounds like Mast Cell Activation Syndrome. Did you have Covid at any point? They are seeing an increase of symptoms like these that you describe after eating. I suggest seeing a rheumatologist, gastroenterologist and immunologist. Staying away from high histamine foods may help. Otherswise I would suggest taking diamine oxidase (you can buy it online) and see if it helps? Keep a food diary and maybe incorporate the help of a dietitian? I wish you well!

REPLY
novakp52 | @novakp52 | May 24, 2022
In reply to @becsbuddy "@novakp52 Be sure to let me know about the results of the ANA blood test, if..." + (show)
@becsbuddy

@novakp52 Be sure to let me know about the results of the ANA blood test, if that’s OK

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I got the results of my ANA ANA SERUM IS < 1:80.

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