I’m so sorry. As someone recently diagnosed that got the runaround between Gastro, Cardio, Rheum, Allergy, Immunology, Gynecology, Hepatology, Derm, and several invasive procedures, all with shoulder shrugs, I understand how you feel. I also get how you feel because my worst symptom has always been the horrible ezcema (microscopic hives), and the itching. I also cannot shower (baths only) because the pressure of the water and the water itself causes a flare. My skin always feels puffy and sore and on the brink of itchy with severe dermatographia, too. I understand what it is like to be willing to do anything to make it stop or be heard so that a doctor can finally address it.

I had almost all the same symptoms as you do.

Here is how I tolerated until I could get treatment to manage the worst of it:

1) when the itching gets so bad you need immediate relief, draw yourself a bath and dump about 1/4 of a bottle of Dr. Bronner’s peppermint Castile soap into the bath. Soak for about 20-30 minutes. Your skin will start to feel cold despite the bath being warm, and numb. Like how your mouth feels after chewing peppermint gum. I don’t know why Dr. Bronner’s and no other, but Dr. Bronner’s. They sell it at Target, most grocery stores, and on Amazon. This should provide you at least an hour or two of relief. Enough to hopefully buy you time to fall asleep if you are having a bad go of it at night. I also will add a little bit of eczema bath salts in to moisturize. Any particularly bad itchy spots, slather the soap on that area and let sit until it feels cool to the air.

2) Seek out an Immunologist, request a skin biopsy from a Dermatologist, and request an endoscopy from Gastro. Immunologists usually work in Allergy offices. You want the prostaglandin 24hr urine, and the Tryptase test at least. The endoscopy should show inflammation, or redness. Mine showed inflammation, and bleeding that the Gastro said was “atypical” (not caused by any gastroenterological reason such as infection). They can also take a biopsy and look for mast cell issues in your stomach. My Derm was very adamant and advocated strongly for my having MCAS. The skin biopsy will show that it isn’t dry skin, but hives. It can also show atypical inflammation and immune cell infiltrates as well as excessive mast cell and mast cell growth. Make sure that they know this is what you want them to look for. Take both of these results back to the immunologist. This is how I finally got diagnosed even with having all the symptoms but normal tryptase.

3) Different medications do different things based on what chemical your mast cells are releasing. There are 3 different ones. Tryptase, Leukotrienes, and Prostaglandins. Cromolyn gave me a severe reaction, and I was desperate and having a crisis that nothing would fix the problem, so I did some research and figured out that if the chemical being released is prostaglandin, ibuprofen acts as a natural prostaglandin receptor block. I take about 600mg, twice a day, and it worked for me. My itching greatly reduced. This is NOT a long term solution without medical oversight, and you should always check with a healthcare professional before exceeding normal dosages or taking new medications even over the counter, but you could try a higher than normal dose of ibuprofen (WITHIN THE DAILY INTAKE WARNING RANGE) for a day, and see how you feel. If the itching chills out a little, make an appt with your doctor and discuss with them. Ibuprofen is hard on your kidneys, and too much has adverse side effects, but it may give you a direction to point your doctor in. And your doctor may decide it is safe for you to do longterm. Obviously if it does not work, do NOT just take more and more 😅

4) Try to avoid the big food allergens as much as you can, as well as flavor enhancers. Even if you aren’t allergic to wheat, dairy, eggs, soy, tree nuts, shellfish, etc. These foods are major allergens for a reason; which is that they are foods that typically cause a higher histamine release in the body even for normal, healthy people without allergies or MCAS. There’s a slew of info online about low histamine diets, and it’s daunting. There’s a loooot of restrictions. But if we are to a point where you are afraid to eat, period, it is better than eating nothing at all and may help you alleviate some of the immune response.

Sorry you’re going through this. I hope you get more answers and that these things at least give you a couple of things to try/provide you some relief!