My allergist says that gluten doesn’t cause my hives or swelling
My allergist says that gluten doesn’t cause my hives or swelling (allergy tests are negative). I beg to differ. I’ve been gluten free since Jan.(I’ve been hive free and no swelling since mid April) Last night I ate a piece of slim Jim not thinking. My arms and hands itched all night and I woke up like this. GLUTEN/POTATOES are my triggers. Took 3.5 months of being gluten free to see results. My suggestion to you all try going GLUTEN free!
Discussion
Tabatha Warren I’m allergic to msg, and sodium nitrates (which are In slim jims)
Renae Mondragon How’d you test for those?
Laurie Beall Toth Me too! I’d end up in the er if I ate a Slim Jim or a hot dog. I’m guessing that’s what it was.
Pamela Vance Wollam My understanding is hey are high in histamines- you don’t have to be allergic to have a reaction.
Josephine Palermo Williford Me too msg and sodium nitrates totally set me off I only found out by trial and error on allergy tests I am negative for everything
Patrice Clarke I had the same expert with my allergist, he laughed when she asked about gluten, then I cancelled my next appointment because I was hive free off gluten.
Renae Mondragon He told me it was coincidental. Um early on, I ate a cookie or muffin boom, hives right after. So now i don’t eat it on purpose.
Joy Mason Hi, my daughter can’t tolerate gluten and the tests show no allergy. She has a condition called mast cell activation disorder. It causes Lora of symptoms which could also be attributed to chronic urticaria. It’s typical of mast cell disease to have multi systemic reactions with no ige response to allergens. My daughter only has 9 safe foods. Good luck x
Renae Mondragon Wow 9 foods! Ty. How was she diagnosed? Drs don’t seem to help much, I went to 4 different Drs. Allergist(2), endocrinologist, naturopath
Joy Mason With lots of fighting. We have seen lots of specialists. She got worse and worse until it seems everything was a trigger. Her gastronenterologist referred her to an allergist. In the meantime i was researching and discovered mcas .so emailed another consultant who agreed to take the case if we could get a referral speed forward to this consultant running some tests. She had elevated n methylhistamine in her 24 HR urine sample, a positive response to mast cell stabilisers and multi systemic symptoms with no ige response. These are the diagnostic criteria our consultant went by. The testing is very fickle and needs to be done my somebody who knows about mcas and how to handle the samples (histamine starts to decade within 40 seconds of leaving the body). Which country are you in?
Renae Mondragon I can imagine. You seriously have to be your own advocate!
Joy Mason Certainly do. There are some good mast cell groups on fb if you want to learn more.
Renae Mondragon Yes, can you recommend 1? My allergist said uticaria, I said there’s gotta be a root cause. Or it’s something else. What’s your daughter’s treatment?
Joy Mason She has sodium cromoglicate in Nalcrom and intal as an inhaler. She has high dosage antihistamines and ketotifin.
Sharette Gallo Santos But potatoes do not have gluten so that’s interesting. Maybe an allergy to them
Renae Mondragon Potatoes will put me in the ER. (THIS started again in Dec, been good for 17 years). Yes they are gf. But I do notice it’s a trigger. All my food Allergies tested NEGATIVE! We need to listen to our bodies, do a rotation diet to find triggers. Its a pia, but I’m glad I know what to avoid now.
Renae Mondragon Oh and it’s not hives from potatoes, its facial swelling, face, lips, head. I’ll get lumps on my head and chin. It’s scary.
Rhonda Parish I stopped eating potatoes several years ago. I realised when’s I ate them I ended up with stomach cramps. Developed hives since then though.
Sarah Elizabeth I’m the exact same. Potatoes are brutal. They are a nightshade and nightshades are a big trigger for me
Joy Mason Potato skin is high salicylates salicylates are one of the food chemicals x
Jennifer Chalmers It’s oats for my son. We have been oat free for three weeks and he has had a major decrease in hives.
Renae Mondragon I have to eat certified gluten free oats
Evelyn Brethour Early on, while I was in a major flareup, I seemed to develop hives and blisters after eating, many things, including bread. I “knew” they caused hives, but what I learned after years of having this condition is that when an autoimmune system is actively “malfunctioning” it responds inappropriately to almost anything. Yep, you are likely going to respond badly to histamines, gluten, salicylates, etc. when you are in a bad flareup. And, you will feel better not ingesting things that set you off at that time, but do not make the mistake of believing this is the heart of your problem if you have chronic hives. Your active hives and angioedema are merely signs that your autoimmune is defective and currently highly overactive and inappropriately attacking your body. Most of us with go into some form of remission, and can eventually eating more things. These are the days to treasure. Renae, I hate that you are in a flareup. Lips are so sensitive, it must hurt terribly.
Lisa Salem Craine Gluten free helped me too and when I cheat it all comes back
Anybody have solution that? I am frustrated that it’s been almost a year.
After a flu shot I got hives along with angioedema and the flu and it never away.
