Gluten Paranoia? Please help.

[CharlesBronson]

Hello everyone

I didn't NOT expect the switch to a gluten free diet to be this hellish. I felt better before my diagnosis eating gluten all the time. I'm 3 months into the diet/healing, but I'm getting more and more sensitive to foods, not less... I'm losing a lot of weight and am largely bed bound. I'm trying to get back into the GI doc, but I'm in a small city and the waiting list is massive even though I'm a patient. 

Cross contamination has me anxious 24/7 because getting glutened after 3 months on a gluten-free diet is ten times worse than it was when I was eating gluten every day. I get that I'm healing, but my gut's level of sensitivity is unbearable. 

How careful do I have to be to avoid cross contamination? Can my girlfriend bring gluten in the apartment? She was eating pre-packaged granola bars last week and somehow I got glutened. She's largely gluten free since my celiac diagnosis, but we figured it was ok for her to bring in the occasional snack. What are the odds of getting a crumb from a damn granola bar?! If she eats out with friends, what do I do? Avoid her? What do I do in a relationship where the other person isn't celiac? It feels hopeless. 

We have friends over all the time too. What if they have gluten crumbs on them? Like, how paranoid do I have to be? Do I have to clean the door handles and anything they've touched after they leave?

 

Sorry for the despair but I'm at my wits end with this disease. Thanks for listening. 

 

[CharlesBronson]

Also... what would the safest type of painkiller for my stomach be? I know I can't take NSAIDs. Maybe like a Tylenol liquid so the pill doesn't upset my stomach?

 

Thanks 

[cyclinglady]

I am sorry you are unwell.  It is true that your reaction to gluten can get worse after diagnosis.  Here is a list of OTC pain medication:

https://www.verywellfit.com/gluten-free-pain-relievers-562382

Any medication has risks and benefits.  But acetaminophen seems to be easier on the stomach (not necessarily the liver) when you follow the directions (e.g. no alcohol or dosage).  

A granola bar?  Maybe.  Did she wash her hands after consuming it?  Did she brush her teeth?  That could definitely gluten you!  

I had a shared household for years.  But we found it was just easier to have a gluten-free household.  Harder in that I typically have to cook food for everyone at parties or I set up a separate table (outside) for BBQs and toss or give away all leftovers, even the gluten-free due to possible cross contamination. 

Good practices like washing hands, brushing  teeth, or cleaning with a separate sponge if you handwash dishes can help prevent cross contamination. 

Hey.  You are sick.  Anxiety is common when you are exposed to gluten.  Put in some strict rules to keep you safe until you see results.  Your home is your kingdom!  You deserve to have a safe place at least for a while!   We had a member who was getting glutened by her slobbery adorable toddlers.   Once she had her kids tested, the entire house went gluten free and she healed.  

Final advice....do not eat out until you are well and keep that GI appointment.   Ask for these tests (bring this in to the office):

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

It does get better.  You just need more time.  

Edited March 11, 2019 by cyclinglady

[Ennis-TX]

Yeah, I had to go totally gluten-free house after diagnosis. The sensitivity was insane, and I kept getting other food intolerances and sensitivities when this was happening and it confused the frack out of me. Like all of a sudden, I was in pain and vomiting from soy, peanuts, peas, olives, sesame, etc. Keep a food diary also, this way you can learn if you get any other problem foods.  and stick to whole foods, few ingredients as possible. Simple stews, soups, look up sheet pan meals, egg dishes, etc. Foil, parchment paper, and crockpot liners are life savers. I fell in love with Nordicware microwave cookware, simple, cheap, tossable if you mess up, and the lovely splatter clovers have ended cleaning the microwave constantly.

I started waking up at 3am so I could clean and cook before anyone else, and adjusted all my meal times accordingly but still got sick often. I still have a PTSD like trauma of waking up at 3-4am to eat and eat an hour before normal lol. 
But yeah gluten flour, can be airborne for over 24 hours if used in a kitchen and it settles likes dust on everything....we can inhale it and that tiny bit washes down with our mucus into our stomachs. Gluten residue on sink handles, fridge doors, cabinet knobs. If you touch it while fixing your food then touch your food glutened. Also if your gluten-free eats gluten, she can have active proteins in her mouth for a while so kissing can make you sick. It might be best for her to adopt the diet fully, heck might be fun cooking from scratch together all the time.  Not to be paranoid but these are reasons I said went whole house free of.

Do double check the Newbie 101 section. I also do list quarterly of some gluten-free options. 
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/123298-gluten-free-food-alternative-list-2019-q1/