Lupus/allergies, lupus or something else
do not know where to start..I am female/54/diabetic/bad control/post meno/anxiety/hypertension/high lipids/stomach issues like reflux and IBS, maybe others..in mid March was very sick with sinusitis..that began the weird lip swelling..first the half of my top lip..moved to half of low lip..(outer lips) and my tongue on either the tip or sides..one side at a time..take benadryl everywhere I go...panicking..no rhyme or reason..kept food list..meds too..on 2 different insulins. glucatrol xl., benicar, metformin, protonix, tranxene, OTc like pepto bismol and mylanta and alka seltzers...aot...now end of May it still happens..so far either ip or tongue...afraid of getting in windpipe..Dr seems unconcerned..I noticed suddenly american cheese then breaded chicken at Jacks but not kfs, then ate an egg and in grocery store 5 hrs later it did it...then when daughter sat by me it happened on my lip right then..sriving me crazt; scared for my life as Benadryl takes a few hrs to work and some tmes I sleep thru night from benadryl and places get smaller but go away the next day...help me..and another thing..it happened once when I had ONE bite of a cheddar cheese cracker..today I foolisly swallowed my pills with a swig of mylanta and pepto and then it happened on tongue..only thing ate earlier was a tiny chicken finger from Jacks...IF I ever got swollen in windpipe would I feel aa lump like my tongue and lips do or would I just start to smother???is it lupus..asking casue a flat patch of white spots on left side of face like part of skin, when I get hot it shows up more...kinda a lacy pattern...5 yrs ago kept the butterfly look, but not now...two cousins have it
My heart goes out to you. But I want you to know there is hope!
I have had lupus for 22 years, and although it is not widely, known, 100% of lupus patients have food allergies. And the most common allergies are gluten (wheat) and dairy. Eggs are on that list as well. From your own description, it sounds like you react to dairy/ cheese and wheat.
I remember reading a story in the book "Food: your miracle medicine" of a woman whose severe, crippling rheumatoid arthritis was caused entirely by her addiction to cheese (she was eating a pound of cheese a day!). That story really opened my eyes about what I put in my mouth.
I'm going to give you a few suggestions
1) see if you can carry an epipen. It will work much faster than taking oral benadryl. If you can't, then get the liquid benadryl, which will get into your system faster than a pill will.
2) check out this post by Dr. Mark Hyman
3) start tracking your symptoms and what you eat. Here's a free tool:
4) Try going for one week without eating any wheat, eggs, or dairy. On the 8th day, add back in one of those (either the wheat dairy or eggs, but not more than one of them) and see if any of those symptoms show up within 24-48 hours. Keep written record. On the 11th day, add back in a 2nd food (wheat, dairy, or eggs) and keep track. and on the 14th day, add in the last food you removed. See what happens. There are all kinds of blood tests you can have taken, and some are quite expensive, but doing this elimination diet is actually the most effective (and cheapest!) way to find out how your body responds to foods.
I eliminated gluten (wheat), all dairy, eggs, artificial sweeteners, and shrimp, and I have gone from a severe lupus flare (heart failure, kidney failure, anemia, stroke) and taking 9 meds and chemo to being on no lupus meds at all. I'm even healthier than a number of my "healthy" friends. Food is powerful! It can harm, and it can heal.
You are on the right track. Your instincts are telling you that what you eat is aggravating your body. And that is definitely in line with what the more progressive doctors are discovering about all autoimmune disorders.
Hugs and best wishes!
If you think of it, as you heal, write in with your progress report, even if you're frustrated. I'm here to help as much as I can-
The Singing Patient