Newly gluten free and need help!

[mrsburnssassin]

Hello Celiac Community,

I am newly diagnosed and attempting to transition to a gluten free lifestyle (it’s hard!) I have a few upcoming trips that were planned long ago, one includes staying at a friends home for a week. Although she is being very sweet about accommodating me, I know that I can’t realistically eat packaged foods for a week and that I’ll inevitably be exposed to gluten. My concern is that I heard from most people that getting glutened is a lot worse the longer you are gluten-free. Although I want to maintain my gains thus far, I wonder if I should introduce small amounts of gluten prior so I won’t be sick while I’m there? Also, wondering what Celiac parents have done in regards to getting their children tested. Thanks in advance to all. 

[trents]

Welcome to the forum, mrsburnssassi!

Have you been officially diagnosed with celiac disease or NCGS (Non Celiac Gluten Sensitivity) and how long ago? How long have you been working at your gluten free diet? The length of time you have been gluten free or at least approximating it is an important consideration in your question about losing tolerance to gluten ingestion.

[mrsburnssassin]

Hi and thank you! I was diagnosed with Celiac Disease about a month ago and have been mostly gluten free except some trace amounts since then. The trips will be 2 and 3 months gluten free respectively. I also had extremely high antibodies >250 and Marsh 3b intestinal damage, so I believe my illness went undetected for quite some time. 

[trents]

What happens now if you accidentally get some gluten? How do you react? Can you differentiate between when you get a trace as opposed to a larger amount?

[mrsburnssassin]

Hi, usually I get very bloated and lots of neurological issues (neuropathy, ataxia, migraines, dizziness) when I was full on eating gluten. Now, with trace amounts, I see a little bit of bloating and some dizziness and numbness but it’s much more mild and goes away faster. Although those symptoms are bad, they were what I was used to dealing with for multiple years. My concern is that I may develop something more debilitating, such as vomiting or more intense GI issues now that I started cutting gluten out.

 

[trents]

There is no way to predict what will happen now. My suggestion is to communicate with the cooks while you are away to avoid getting glutened as much as possible. In restaurants, tell the waiter you have a medical condition that demands you avoid gluten and then order stuff that is least likely to have gluten. As far as covering yourself for trace exposure, consider ordering some GliadinX. Scott Adams and many others on this forum are convinced that this product gives them coverage for cross contamination events such as you commonly experience in restaurants. In the interest of full disclosure, GliadinX's creator is a sponsor here on celiac.com. https://www.amazon.com/GliadinX-90-Capsules-Scientifically-Proven/dp/B07B9S7PD2/ref=sr_1_1?crid=2FNG8VR0CMBXT&keywords=GliadinX&qid=1696453644&sprefix=gliadinx%2Caps%2C134&sr=8-1

[mrsburnssassin]

All wonderful information, thanks a bunch!