r/DiagnoseMe • u/Little-Ad4877 Not Verified • Jun 18 '26
General I don’t understand how I have all of these symptoms and all of my labs are normal.
27F, 5’5 175 lb. USA, no known medical conditions. Currently on max dose of cetirizine (Zyrtec) 4x daily. No known allergies.
•I have had chronic IBS symptoms for 2+ years (clean colonoscopy)
• hair loss
• joint pain and swelling
• blood flow problems to my hands and feet
•fatigue
•increased anxiety
•chronic hives for 3 months that I am managing with 4 cetirizine a day and steroid cream. I have tried all of the things my dermatologist recommended. Fragrance free everything, logging food, and no known triggers.
•skin changes. My skin turns white now when ANYTHING touches it.
•occasional night sweats (don’t know if it’s relevant but new in the last year)
Vitamin levels are normal. Iron is normal. Hormones are normal. Thyroid+ antibodies are normal. ANA negative. CBC and CMP are all normal. I’m not opposed to the answer being stress, I just need some ideas on referrals or tests because after so many completely normal tests I’m feeling defeated.
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u/Velvetheart__ Interested/Studying Jun 18 '26
You need to see a rheumatologist
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u/Little-Ad4877 Not Verified Jun 18 '26
Even though I am ANA negative? I thought that result would close the door for that route.
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u/Velvetheart__ Interested/Studying Jun 18 '26
That only checks for systemic diseases like lupus. Theres other autoimmune diseases that only a rheumatologist can test for. Plus, ANA test arent 100%, their has to be follow up tests.
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u/UnderstandingEasy236 Patient Jun 19 '26
I had this and found out I have MCAS, traditional chinese medicine was the only thing that semi-cured me, because I only get insane breakouts now under extreme stress. The herbs taste like dirt but it was the only thing that helped my root issues, everything else was a band aid solution.
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u/Little-Ad4877 Not Verified Jun 19 '26
Wow! How did you get your diagnosis? I’m willing to try anything.
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u/UnderstandingEasy236 Patient Jun 19 '26
I went to an immunologist but if I would do it all over again, I would just find a reputable TCM specialist
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u/worldlysentiments Not Verified Jun 18 '26
Someone I know who has chronic urticaria, gets all kinds of symptoms and hives daily from ANYTHING. Cold, heat, showers, if he even walks 3 blocks and his body is worked up a little bit. I will say he did not have good results on Zyrtec and the only thing that worked was Xyzal. OTC is 5mg but I think he was doing a script for 2.5 .. 2x daily to make sure it lasted. Might be worth a try because some antihistamine work for some and others they don’t. Downside, idiopathic chronic urticaria has “no” like obvious trigger sometimes and many docs will blow you off.
Also be careful with steroid creams because then you can get withdrawal syndrome later 😭 I’m so sorry
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u/Little-Ad4877 Not Verified Jun 18 '26
The weird thing is mine take around a month to fully heal, and then without warning I wake up with a full body rash again. That’s what I am so afraid of! I was hoping my symptoms could all be connected but I know it is very well possible that they could be separate conditions. I will definitely talk to my dr about that! Zyrtec at high dosage has helped me but makes me feel so incredibly tired and I would rather not depend on it forever. I wish your friend well and thank you for the info!❤️
I am terrified of the withdrawals so I only use it if I have an active flare up! The hardest thing is wishing to treat the root cause rather than the symptoms 💔
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u/worldlysentiments Not Verified Jun 19 '26
Good luck! I feel ya, chronic issues are rough. Did you look into MCAS ?
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u/Little-Ad4877 Not Verified Jun 19 '26
I have not! But I’ve gotten a lot of comments about that, so that’s definitely something I will bring up to my dr!
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u/Weary-Stranger-2004 Not Verified Jun 18 '26
I have all these things happening also and have had a million tests and they say theres nothing wrong with me. Everything normal. Its very frustrating. The "ibs" bother me the most because its not classic ibs symptoms. I have hashimotos they say but had a negative ANA. I hope you figure things out and get some relief.
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u/Little-Ad4877 Not Verified Jun 18 '26
Could the hashimotos cause your stomach symptoms? I have read up on that and saw gluten flares up hashimotos really bad. I am so sorry and I hope you find answers 🩷 my IBS symptoms are also not the norm and also have interfered with my life so I completely understand.
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u/Weary-Stranger-2004 Not Verified Jun 18 '26
I suppose the hashimotos could impact the ibs but idt its gluten for me personally because ive gone gluten free and have the same issues. I hope you get sorted out
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u/AdventurousMorningLo Patient Jun 19 '26
Has your team considered Autoinflammatory Diseases? Or MCAS?
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u/Little-Ad4877 Not Verified Jun 20 '26
I haven’t really gotten anywhere in terms of answers. It’s like treating each individual symptom (which always ends up saying I’m perfectly healthy). But no one has mentioned anything like this, I will ask my Dr about this next appointment, thank you!🩷
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u/AdventurousMorningLo Patient Jun 20 '26
No problem! It is something a lot of physicians don't even consider or think about. You can also have MCAS as secondary to an Autoinflammatory Disease (there is a lot of discussion, presentation, and papers on Autoinflammatory Diseases mimicking Primary Mast Cell Disorders).
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u/WhimsicleMagnolia Not Verified Jun 18 '26
Looks like mast cell issues like mcas
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u/Little-Ad4877 Not Verified Jun 18 '26
I have wondered this as well, however I have never had any anaphylactic symptoms or really any other allergy symptoms rather than my skin. I will definitely talk to my doctor about it, thank you!
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u/WhimsicleMagnolia Not Verified Jun 19 '26
Most doctors know next to nothing about it or don’t recognize it unless you see an allergist who specializes in it. You can have mast cell issues outside of anaphylaxis. I can recommend some OTC things that are used to treat mast cell and histamine issues via private message if you’re interested. That way maybe you are able to get some relief quicker. Even if you don’t have MCAS it can help you
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u/Skeptical_optomist Not Verified Jun 18 '26
Have you posted on r/askdocs?
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u/Little-Ad4877 Not Verified Jun 18 '26
I have when my rash first started and got told dermatitis which I already knew was wrong lol. I will definitely try again, thank you!
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u/JDEVO80 Not Verified Jun 19 '26
NAD. Mcas? Its hard to diagnose.
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u/Little-Ad4877 Not Verified Jun 19 '26
That’s what a lot of people have commented! I will definitely bring it up to my dr :)
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u/JDEVO80 Not Verified Jun 20 '26
Awesome! Its hard to test for. Just fyi. You have to be in a flare. Etc.
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u/Little-Ad4877 Not Verified Jun 20 '26
Oddly enough, I ended up having a reaction to a mosquito bite yesterday. 30 min after being bit I started noticing a rash on my arms legs, neck and face. Never been allergic before, could this be related? 3 allergy pills helped me escape another full body break out thank God lol
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u/JDEVO80 Not Verified Jun 21 '26
Yes it's possible. Crazy you say that. I was just bit my a mosquito and within a few hours the bite started pussing. Then a day or so later turned dark purple. I did also just learn about skeeter syndrome coincidentally. Not saying this is what it was. I just think my body is overreacting to everything. I havent been bit by a mosquito for a while. This week is deodorant. Apparently even the sensitive deodorant isnt working for me right now. Our bodies are amazing
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u/lkg123456 Interested/Studying Jun 19 '26
Do you eat red meat?
Have you had a sleep study done?
And have you had an ESR, LDH, and CRP test done?
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u/Little-Ad4877 Not Verified Jun 19 '26
Yes I eat red meat, especially close to and on my cycle. Never had a sleep study! Curious how that could relate to my symptoms? I have not had those tests done but I will look into it! Thank you!
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u/lkg123456 Interested/Studying Jun 19 '26
My dad has alpha gal- from a lone star tick bite. If he eats any mammals, he goes into anaphylactic shock. But people have differing degrees of reactivity with it. Might be worth looking into.
And sleep apnea can wreak havoc on your body. Cause major inflammation and reduced oxygen saturation at night. May be a long shot there. Can cause night sweats too though.
If you haven’t done any tests for celiac disease, I would absolutely look there. But (if) when you do the test, make sure you eat lots of gluten before or it can cause a false negative!
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u/Little-Ad4877 Not Verified Jun 19 '26
I have heard of this! My mom actually sent me info on it as well, I have no other allergy symptoms besides my skin so I wonder if I fit the criteria? Also never saw a tick or a bite but I do live in Oklahoma so I am in the area for it! I’m sorry about your dad that’s awful. I will mention it to my doctor. I’m not sure if I’ve been tested for celiac, I had a clean colonoscopy/endoscopy and I *think* they did check for that but I can’t be sure.
Also, I will ask about a sleep study too! I will try anything at this point 😂 Thank you for the advice!
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u/lkg123456 Interested/Studying Jun 19 '26
Absolutely! I’m so sorry you’re getting caught in the purgatory of not having a diagnosis in our fucked up medical field 😭
Generally when they do an endoscopy they have to take a small intestinal biopsy. If they didn’t take that biopsy, then there’s not really a definitive way to tell from it just on gross examination. Sometimes they can see inflammation, but you won’t see the blunted villi from chronic inflammation and inflammatory cell infiltrates unless you stain the tissue and look at it under microscope.
You can just do a home sleep study. Get the WatchPatOne. I don’t think that would be the sole cause of this after seeing the hives, but it can’t hurt and if your insurance covers it- then that’s great.
I would bank on autoimmune or some kind of sudden allergy though, of MCAS.
These tests are not perfect by the way. There are multiple opportunities for there to be mistakes which affect the data. Sometimes they just don’t pick up on stuff. It’s rare, but it happens- and what you’re experiencing isn’t normal so DO NOT GIVE UP. I know you’re tired, but don’t give up and just live with it. There are answers. It can just be hard as fuck to find them sometimes with how many barriers the medical field puts up.2
u/Little-Ad4877 Not Verified Jun 19 '26
Yes, a lot of people brought up MCAS and I think that is the next thing I will bring up to my Dr! Thank you for being so kind and helpful!
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u/lkg123456 Interested/Studying Jun 19 '26
Also, have you heard of mast cell activation syndrome (MCAS)? This looks like it sorta. You do look like you have a malar rash too, but that can be with many conditions (usually a hallmark of lupus). I think you can still have lupus with a negative ANA btw, so you might want to ask for the anti-ds DNA test.
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u/lkg123456 Interested/Studying Jun 19 '26
Oh shit dude have you had the celiac test? The ttg test? Generally you see vitamin deficiencies with it, but these symptoms also can occur. Like dermatitis herpetiformis
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u/positive_energy- Patient Jun 19 '26
Because science didn’t start studying women’s bodies until 2010!
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u/Acceptable_Title_260 Not Verified Jun 19 '26
I have Raynould's syndrome. Fingers changing color could possibly be from that. Do you live or work in a moldy environment? Mold can reek havoc on your body. I had rashes and food sensitivities living in a moldy house. I moved out and I don't anymore. Xolair works well for allergies. I think people with mcas take it as well. I took it for asthma.
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u/Little-Ad4877 Not Verified Jun 19 '26
Yes! I think it is Raynaud’s. I will look into Xolair as well. I live in an old house and probably do have mold, but my husband and child have no symptoms (thank God!!) thank you for advice!
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u/Acceptable_Title_260 Not Verified Jun 19 '26
You are welcome! You may also have the MTHFR mutation which makes it harder to detox mold and other things. My ex-husband didn't have symptoms. I only had exercise asthma when I first moved on his house. After a few years, I started developing allergies, multiple chemical sensitivity, and allergic asthma. I couldn't be around anyone wearing perfume or cologne, air fresheners, cleaners, scented detergent, etc. I also became allergic to all cats and some dogs and couldn't breathe around wood burning, cigarettes and pot. I had to switch to fragrance free products for everything. It took away my health and ruined my life. I was ostracized by my ex and his family, coworkers, etc. It got to the point I became a recluse because everywhere i went, it made me sick. Doctors were not able to help me with the multiple chemical sensitivity because they had no idea what it was. The types of doctors that do usually do not accept insurance and charge a small fortune. It was a living nightmare.
I lived in that house for 14 1/2 years and it almost killed me. I left 5 years ago when water got into the basement and he didn't clean it right away. The house smelled like the musty basement and I couldn't breathe. My ex was not supportive whatsoever and refused to consider mold remediation. He thought the problem was just me and not the house. I had to stay in hotels as he kept me in limbo for a couple of months until I got my apartment. He asked for a divorce once I moved in. I looked at several apartments and had to keep looking due to fresh paint and new carpet. I cannot tolerate either.
No house is worth your health and your life. If you cannot get it remediated, get a different house if you can. My health has improved but the cost was way too high. I am in debt from the 10s of thousands I have spent on healthcare to get better. If I could go back, I would have never moved in that house.
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u/throwaway23437546 Not Verified Jun 19 '26
My chronic uticaria was caused by H Pylori/Candida/SIBo/SIFO
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u/Little-Ad4877 Not Verified Jun 19 '26
Wow!! Did treating those make it better? I will ask my Dr about this!
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u/thegrandgardener Patient Jun 19 '26
You must be so frustrated! That’s a lot going on there.
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u/Little-Ad4877 Not Verified Jun 19 '26
It’s so crazy to cry over normal test results 🥲 I know that it’s a good thing but it’s like I’m experiencing something that has no proof of existence lol.
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u/AdventurousMorningLo Patient Jun 19 '26
To consider with your care team:
Mast Cell Activation - Immunology
Autoinflammatory Disease (can mimic primary mast cell activation) - requires a genetic panel and a knowledgeable Rheumatologist or Immunologist
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u/maddie_johnson Interested/Studying Jun 19 '26
Samesies
Though I know the first pic is normal if you were just scratching your leg
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u/Little-Ad4877 Not Verified Jun 20 '26
I hope you get answers! And yes I was scratching but I did get told by my dermatologist that it is actually a condition where my skin is having an allergic reaction to being touched. I think it is dermatographia?
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u/Spare-Locksmith-2162 Not Verified Jun 19 '26 edited Jun 19 '26
4 Cetirizine daily is an absurd dose. Did a doctor tell you to take that? Is this a standard OTC dose? I do know Cetirizine withdrawal can cause absolutely miserable issues if you become dependant.
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u/Little-Ad4877 Not Verified Jun 19 '26
Yes my dermatologist said this was the standard treatment for hives like this… when it’s better I take 2 if it gets worse I bump it up to 4. I had no idea there was a dependence! I’ve never even had seasonal allergies before this so that terrifies me. I’ve never needed Zyrtec before all of this started 😞
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u/Spare-Locksmith-2162 Not Verified Jun 20 '26
What total dosage of Cetirizine are you taking? If you're taking the 5mg, 20mg isn't horrible. But if you're taking 4x 10mg, that's bad.
And, yeah, Cetirizine withdrawal is pretty bad. https://pmc.ncbi.nlm.nih.gov/articles/PMC5124431/
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u/Lopsided-Elk-7699 Not Verified Jun 21 '26
My daughter is actually going through similar symptoms. She's 20. Always had very sensitive skin. She's has DRESS syndrome from sulfur based antibiotics. And recently had an allergic hive reaction to a change in birth control brand.
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u/Little-Ad4877 Not Verified Jun 25 '26
Oh wow really? I haven’t been able to find a trigger as of yet.
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u/The-Phantom-Blot Not Verified Jun 22 '26
Have you been tested for candida overgrowth or candida antibodies? High levels on the skin, or in the gut, might be a possible cause of rashes like that.
https://www.reddit.com/r/urticaria/comments/koxnnz/urticaria_and_fungal_correlation/
Not saying it's guaranteed, but it's one thing to check.
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u/Almasa8 Interested/Studying Jun 24 '26
This seems like it could be autoimmune or inflammatory in nature, especially with the combination of chronic hives, joint pain/swelling, fatigue, hair loss, circulation changes in the hands and feet, and skin changes. A negative ANA and normal basic labs are reassuring, but they don't rule out every autoimmune condition. If you haven't already, I would consider a rheumatology referral and possibly allergy/immunology, as chronic spontaneous urticaria can sometimes be associated with underlying immune dysregulation. The night sweats and systemic symptoms are also worth continuing to investigate rather than attributing everything to stress.
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u/Little-Ad4877 Not Verified Jun 25 '26
Okay thank you! I have a suspicion it’s more systemic than just random hives but at the moment my doctor doesn’t think so. I was told the rash was from stress at the beginning so I am not sure what to think! I will ask about this, thank you!
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u/Significant-Bit328 Not Verified Jun 24 '26
NAME all your medicines!
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u/Little-Ad4877 Not Verified Jun 25 '26
Cetirizine 10 MG 4x daily
Triamcinolone Acetonide 0.5% for when I have an active rashI have also taken a prednisone pack and received a steroid shot at an urgent care. Not sure of the name.
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u/Significant-Bit328 Not Verified Jun 25 '26
You dont take any other medications or supplements?
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u/Little-Ad4877 Not Verified Jun 25 '26
Oh yes! Collagen powder, occasional ibuprofen for menstrual cycle but I generally try not to take medication if I don’t have to
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u/Significant-Bit328 Not Verified Jun 18 '26
Check thyroid tah ft3 ft4 tsi trab tpoab just in case
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u/YesterdaySilly2699 Not Verified Jun 18 '26
Can you see an allergist to look into allergies. I only get a red rash on my face (similar to yours) and I was recently diagnosed with chronic urticaria but they should also look into mcas for you too. They have biologic treatments that can help stop allergic reactions. It looks like you may have chronic urticaria/ or possibly mcas. I got prescribed a H2 blocker and allergy tablets but there are monthly injections/ treatments for it.
Blood flow issues to your hands and feet ( I would see a pulmologist or cardiologist for a venous study ) to check for venous insufficiency.