New to this--first gluttened exp. How to feel better?

[DrMommy09]

I woke up this morning feeling terrible after a week of progressively feeling better off gluten (I was diagnosed via endoscopy last Friday). Last night, against my better judgment, I ate out at a restaurant where I specifically mentioned I had celiac and needed to eat gluten free. The staff pointed me to a few menu items and I ordered a salad with grilled chicken (no dressing) and a water. The salad had some shredded cheese but otherwise was seasoned chicken and lettuce.

This morning, all of my symptoms are back in full effect. I don't have major GI symptoms--but all the others are back (stuffy nose and ears, muscular pain, bloat, itchy skin and feeling generally hungover). I am assuming I ate something with gluten. I am mad at the restaurant and myself for not trusting my instincts --and worried it is going to take a while to start to feel better after this setback.

how do you all do this? I am feeling pretty alone right now and pretty distrustful. I never want to eat out again!

Also, any tips on recovering from being gluttened and what I can expect would help.

 

 

 

 

 

[cyclinglady]

I am sorry that you are sick!

Maybe, just maybe, you were not glutened.  It's hard to tell during the first few weeks of starting the diet and healing.  Remember, your antibodies are probably still pretty high, meaning your body is still attacking itself.  It can take weeks to months to feel better.  Some take a year or two (that would be me).  

The best advice I can give you is NOT eat out at restaurants until you start to feel better.   Give it six months.   Then when you do, you need to find celiac-friendly places (and not just those with gluten-free menus).  Look on the internet.  There are sites like "Find Me Gluten Free".  I read the reviews.  If someone mentions that they have celiac disease and did not get sick, we'll choose that restaurant.  Beware of the gluten free junkies who have no idea about cross contamination, etc. on those reviews.  Really nice (expensive restaurants) usually do a great job.  But that takes me getting up and talking to the head chef (or he/she comes to the table).  I listen to how they prepare my meal (clean pan, etc.)  I NEVER rely on the waiter.  They are most likely clueless (no offense to waiters -- I was one during college).  If there's any doubt and if  I'm with a crowd, I just order a drink.  I always have food on hand (packets of Lara Bars, applesauce and peanutbutter packets).  Sometimes, I just pack a lunch and excuse myself after I order my drink and eat my food in the car.  Other times, I bring it in and eat it.  Just depends on staff and what they will allow.  I bought a cute cooler bag that looks like a purse.  In the car, I have a good cooler that I fill with snacks when I am running errands (you can only eat so many Lara Bars!)  

Soon, things will get better.  You'll feel better and you'll have the gluten-free diet down.  That's part of the reason why it can take so long to heal.  You have to learn how to really be gluten-free.  It's a steep learning curve.  

Meanwhile, rest.  Drink plenty of fluids and stick to easy-to-digest foods (like soups and stews) that you prepare yourself.  I keep stew and soup in the freezer just in case one of us gets glutened.  

Being prepared is your best defense!  

Hugs!  

 

[DrMommy09]

Thank you so much for responding. I am in tears today because I was just starting to notice some subtle differences and feeling better. Today, not so much. I guess it will be two steps forward, two steps back but I am committed to getting well. It's hard to explain this to others. Thanks so much for replying. 

[cyclinglady]

It is hard to explain to others.  Even family often does not get it.  Thankfully, we have this forum.  There's a local group in my area that meets monthly but my busy schedule just does not permit a visit.  I've made some firm friends on the forum and have received wise advice that helps me to cope.  

So, come on here to vent, whine and yes, even have a pity party.  Then when you are well, pay it forward and help others.  After a posting here from a member who had to use a food pantry and was offered little in shelf-stable gluten-free foods, I've been dropping off gluten-free foods at our local pantry throughout the year and not just the holiday season.  

I can assure you that things will get better!  

[GFinDC]

I do Pepto Bismol and aspirin after being glutened.  Peppermint tea helps with gas.

It really takes very little gluten to cause us to get sick.  Flour in the air can linger for hours and settle on dishes etc.  But there are some restaurants that seem to work out ok for gluten-free eating.  It there is any doubt, I tend to trust side dishes like veggies more than main courses.

But it's best to wait awhile on eating out.  Cook your own food and learn the in and outs of the diet first hand before you trust someone else's cooking.  Eating the food you cook yourself from whole ingredients is a good way to go.  Simple foods prepared at home with limited ingredients are best IMHO.  The fewer ingredients there are the easier it is to check them.

[AWC-California]

Just adding to what others have said.  It does take some time but it's likely you will start to feel better.  It took me about a year but now I feel great.  A good probiotic might help.  I use one from Synergy that my naturopathic doctor sells at her office.  I have gotten in the habit of emailing restaurants before I try them and have had very good luck.  One owner of a very popular restaurant in my area took the time to reply and said she had Celiac disease (she sent great detailed info about their food).  Many of the people responding will even tell you who to ask for when you come in.  Good luck and hoping you feel better soon.

[Jmg]

Great advice above. It's not certain you were glutened and even if you were don't be hard on yourself. I do that way too much myself and it's not productive. Sometimes it will happen however careful you are. 

Whilst your healing, why not look into making bone broths?  I make both soup and stock from them and they're supposedly very good for healing your gut. I also had a go at sauerkraut, not very successfully!

When I ask for a salad now I ask for it without any dressing, just a bottle of olive oil and, should they have it, cider vinegar. It tastes fine to me and I don't have to worry about what may have made it into the dressing. Your tastes adjust over time. These days I don't want lots of different complex flavours, I stick to whole foods where possible and the fewer variables the better. 

Good luck