I am newly diagnosed with CD. Wanted to connect with others to see if you have any helpful tips or information for newbies. CD wasn’t previously on my radar - getting tested was part of several tests ordered - so I know very little on how to navigate this.
I could be your oasis in the desert. I’m super busy all the time so you’d have to basically burn me up for help. Ask any questions you need. I’m a veteran in this world. Where you located? Message if you don’t want to dox yourself much as well as private questions… Country is enough for now. I planned to post a ton but I have health issues so staying here is the least of my worries unfortunately.
Thank you!! I’m in Washington state. I’ve found a few GF restaurants and am getting the hang of reading labels. Trader Joe’s has been super helpful. But I’m all ears for any pro tips you may have. 😀
Be very cautious about eating out. I have been sick more times than I can count from GF places, or even asking waiters or chefs if items are GF and their incorrect after assuring me as such. Cross contamination is the biggest factor. Surfaces, dishes, hands and utensils. Papa John’s has a GF pizza but if its drug across the same counter and used in the same oven as glutenous pizzas then your wasting your time and money but most importantly health. Some certified GF products can still cause reactions. Such as Oats due to similar protein structures. Watch meats. Mostly chicken as almost all chicken is injected with broths and juices. Spices are risky due to the high cross contamination factor. Find foods that work with you and stick to them. I don’t know how sensitive you are. I am extremely sensitive. Which means I cook my own foods, don’t eat out, travel with dishes and cook on seperate equipment. Wash rinse produce thoroughly. Avoid long ingredient lists. Keep it simple. When in doubt web search get a consensus from multiple sources. Get your vitamin levels checked atleast once a year if not twice to watch how you body responds get a full CBC with platelets to spot inflammation and how your reacting. I’m bombarding with info its 230am for me. Ask questions. Easier for me to get notifications to know you need help. Message a few times if you need. Get in tune with your body tailor your needs to how you feel. Find an electrolyte drink you like keep a few close by. Stay well hydrated. For flushing out. I carry a 32oz glass or stainless bottle. What is and are your symptoms, gender? Even down to the details matter for each symptom because those are your battle points to know how to move. Every action causes a reaction which then needs an counter. Never stop learning stay inquisitive. Cross reference facts. Health is wealth. Get used to friends, family, or anyone else not knowing or understanding what gluten is. GI Dr.s and specialists included. Get hard copies of all medical paperwork even bloodwork ups. Everything every time. No exceptions. You will often spot things before your Dr if you study and know your body. Helps to see trends over time or to be prepared for future issues appointments etc. There is no cure its life long. Stay positive. If your super bad disposable surfaces are your friend like foil to cook on. Avoid plastics for utensils and dishes as with any porous material. Metal and glass only eaisest to wash. Its 3 am almost. I’m out. I’ll be here if you have questions. I don’t get on here often. DM me with medical, questions, whatever you need.
I am, for better or worse, not often able to tell when I get gluten. Going GF did get rid of my migraines and interestingly my hangovers, but it can be hard for me to make a connection with what I’ve eaten. Do you happen to know if there are any good ways to test food before I try it? My current technique is to rely on people who can tell and follow their recommendations.
No reliable way to test there is a handheld sensor but its 25 dollars per test and is so accurate down to 2ppm that it throws a ton of false positives on GF items. So not worth messing with. I can tell within an hour I’ve ingested contaminated food. Symptoms last days. Its miserable when your body attacks itself. It breaks your body down quickly over time. Pay attention to thirst, digestive upset, fatigue, brain fog, everyone is different as its an autoimmune disease. Get in tune with your body. How old are you? Also try to find out who in your family it came from and speak with them. Get family tested if you don’t know. It’d genetic. Keep a food log is the best way and don’t change items you consume more than one new consumable per day or you won’t know which in your log affected you and trial and error that kills your body isn’t fun to do. If your young you might not know contammed food right away but as your bodies reaction gets worse and breaks down overtime and the gut microbiome changes to your new GF diet your symptoms and notice will likely change. Find a well rounded vitamin supplement keep up on vitamin level checks in your bloodwork as you likely will become deficient over time of whatever your body needs. Hidden sources of gluten are in everything it seems. Toothpaste, soaps, shampoos, detergents, dishsoaps, other things besides food and drinks. Mostly due to poor manufacturing or transport practices. Again 1 new item per day. Don’t change what you consume all the time. Learn, read or watch videos. Just because you don’t feel the affects now doesn’t mean it won’t pound your body over years until your suffering daily just to maintain. Some people fair better than others so my POV is for someone like me. Super sensitive and debilitating lasting effects.