CeliacAndCfsCrusader

A good allergist can help. Eliminate other issues, then your body can heal.

If you have CFS or Fibro, (in my case) my experience is that a gluten-free diet helps a lot (but remember that your body didn't get screwed up overnight, it will take time to heal). I had severe fatigue for years, I had to adjust my lifestyle and "listen" to my body. Don't overdue it and your body will cooperate eventually. Good luck, it's not easy, but it can be overcome!

Here's my take. Get yourself to a GOOD allergist and get tested for EVERYTHING. You will most likely find some things that you had no idea were a problem.

Don't cheat. If you are indeed Celiac, you're foolish to intentionally consume what your body considers poison.

My symptoms were prevalent for about 20 years, but it was never an equally symptomatic day. Some days were filled with no reaction and others waking in the middle of the night doubled over. Same daily diet, different reactions each day. (That's one of the reasons why getting diagnosed is a problem, many of us asked the right questions over...and over....and over, and the medical community never had a clue.

As far as yeast, overgrowth, deficiencies, etc, there are many different opinions. IMO, the best thing is to eliminate gluten entirely forever. Then, get allergy tested and avoid those foods and perhaps the families of those foods.

Your body WILL change. Some lose weight, some gain. Some feel better within days, some in years, some have permanent damage.

The only way to ever assure YOUR best results is to eliminate the gluten forever. Good luck.

PS: It's almost 6 years for me and I haven't cheated once. I have been c/c'd, it will happen. I feel tons better, but still have some issues (but at least I know I've done all I can).

For places to stay, I would recommend:

www.venere.it

and www.vrbo.com

Both are good choices for private homes/apartments and hotels.

As a Celiac, I always prefer to have a kitchen. I have rented via vrbo.com perhaps 12 times and have never been disappointed. Look for listings with reviews, lots of photos and "get a feel" for the owner's communication and responsiveness.

Have a blast!

Remember, in Italy, you can often buy gluten-free food/snacks at the local pharmacy.

Yup, I found this out too. As I waited in the drive-thru line, my one and only time there, I saw MY "protein style" burger being scooped by the same spatula as the buns (and maybe the onions?).

I had a brief moment of weakness and said "it'll be ok". I tossed the burger before I left the parking lot. Some things are just not worth it. I haven't been back and didn't feel like educating once again...I was over it that day.

I have limited information, but maybe it'll help.

I was in a car accident a few years before my celiac diagnosis. I began to have "sunburn" feeling and red-shading on my feet at first. Then my legs. Then my abdomen.

Ultimately, after nerve conduction studies, many exams (including docs who either said nothing or I should seek psychiatric help, ha!), my wife diagnosed me using Google.

She (and my acupuncturist) indepedently concluded that I "may" have something called Celiac Sprue. Longer story, short, I finally got properly diagnosed.

My symptoms are still evident, even being 100% gluten-free, but I am on a medicine that helps a good deal (effectively masking my symptoms). I take 50 mg of Lyrica, 3 x per day. It's expensive, I've gained weight, but my life is so much better.

Alternatively, there is a generic of a related drug "Gabapentin", but I started to have blurry vision after a couple of months. The Lyrica vision side effects are minor (I might just be getting old).

Anyway, there MIGHT BE relief through pharmacology, if nothing else. Wishing you luck....

My doc's basically told me that a scope isn't necessary after the initial one, as long as I don't cheat and my blood work comes back negative.

Even thought I didn't mind the actual procedure, their feeling is that ANY surgical procedure should be "necessary".

That being said, I think it's ultimately up to us whether our bodies are telling us something. Good luck.

Remember that the scoops for gelato may be c/c, even if the flavor itself is ok.

Pharmacies have gluten-free food, great for on the go snacks.

Enjoy FRESH vegetables, prepared exquisitely....yum!

Jealous here....

Disney did a great job for me at their new resort in Hawaii. Make reservation ahead of time and you'll be well taken care of.

Have fun!

Agreed, if you go gluten free PRIOR to testing, you will ruin the potential for an accurate result.

NO OATS...often cross-contaminated (at least for me and many others)

Rudi's, Udi's, Outside the Breadbox, Against the Grain = Good breads

Pamela's Cookies

Tinkyada Pasta (brown rice is best, spaghetti)

Kinnikinnick donuts

I usually have French Roast coffee: Target Brand, Folger's and Costco. I have yet to have a problem, but beware of some flavored varieties

Nestle creamers will be clearly marked.

Get to know the ingredients that are issues; this way you can properly read the labels.

Good luck!

I eat the following shredded brands with zero problems (always check the label yourself):

Target Brand

Kraft

Albertson's

Sargento

Precious Mozzarella

Tillamook

FYI, there's also a Costco next to the airport. Very easy to stop on the way to your destination on Maui.

I have been gluten free for 7 1/2 yrs and can honestly say I have never cheated, never even wanted too. I was so sick before going gluten free, that cheating has never been an option for me.

Coming up on 5 years since I've been diagnosed, ZERO cheating.

Gluten = Poison

What's not to understand?

PS: I just had a horrible dinner with DeBoles rice pasta, and if I ever wanted to cheat, it would be this instant DeBoles...you stink!

I too was severely deficient in Vitamin D. Have all of your levels checked.

Keep the faith, it DOES get better.

Add me to the list, but it wasn't Mono, I was diagnosed with Chronic Fatigue Syndrom. I have family in the medical field and no amount of guidance/suggestions would lead me to Celiac until 20 years later (after a car accident which I thought gave me "peripheral neuropathy....low and behold it's Celiac).

I adjusted my lifestyle after being diagnosed with CFS and got mostly better, but never "right". Exertion of any kind would fatigue me.

So, the good news is that being off of gluten has eliminated the physical symptoms of CFS. The bad news is that the car accident replaced them with other symptoms. :-)

Why the smiley? There's hope for car accident recovery and little hope for CFS (....CFS, like any other serious health issue, made be a better,, more understanding person and I'm grateful for that).

Silver linings, we all end up looking for them or creating them if we can't find them. Onward!

As we understand it, bacon, ham, and sausage can attract gluten during the curing process. Fillers may be added to meat (most notably sausage). Turkey may be injected with gluten (to appear plump). Marinades may be used on any prepared meat. We have only come across bacon containing gluten once. It was an inexpensive package in a house brand. I read all labels -- including those in restaurants that do not have an acceptable gluten free protocol in place.

I totally agree, for years Honey Baked Ham had wheat in the glaze.

I've seen it here in the US in sausage.

Why NOT read the label? Peace of mind is worth a lot when trying to enjoy your meal.

speaking of IHOP I wnet last night as we had a 2 free meals coupon from the district manager (we had a BAD experience before I went BF) - we went to a different restaurant tho LOL. Before we sat down. told the manager I was gluten-free. He said he would clean the grill. I got chicken, seasoned potatoes and broccoli. I didn't know it but the seasonings in the potatoes had gluten in them and he didn't use the seasonings!! wtg manager!!

Regarding "seasonings"; a local breakfast place here uses a small amount of Ranch Dressing flavored dry mix on their potatoes...guess what? Gluten!

When really, really stuck...a hot fudge sundae or milk shake at McDonald's will do (I always order without cherry and whipped cream, just in case). Never had a reaction.

I know this won't help, but no matter how difficult, you have to stick to your guns.

I went to the birthday party of a dear friend, "guys night out party" and the steaks were 2 inches thick, grilled potatoes, etc etc and I had to turn it down. It was tough to be left out, but I still enjoyed myself...especially knowing that I ate at Chipotle beforehand and needn't worry about be c/c'd.

Even though "they" don't understand that it's a hassle to actually worry for 24 hours to see if you actually get sick, we sure know the truth.

Feel better and chalk it up to experience.

PS: Here's a hint I use when someone is pressuring me, I say "I have to think of it this way, it's like you eating 1/2 cooked chicken and wondering what the results might be". That usually gets them off my back! :-)

Vegas has a great Whole Foods, about 2 miles south of the airport, load up there. Ask your hotel for a mini-fridge (some even have a microwave). This makes it super easy for many meals.

There are a few Chipotles and Pei Wei's in the metro area (including a Chipotle near the Whole Foods).

PF Chang's is mid-strip too, in the Planet Hollywood.

Search this site for info on Hawaii (and Vegas).

The worry about c/c is exactly why I love Chipotle. There is no reason or opportunity for a flour tortilla to ever touch anything else (except "maybe" the gloves of the worker or the edge of a spoon when dumping onto the tortilla, that being said, I've never had a c/c issue with this...perhaps tortillas simply don't give off gluten to any degree).

Anyway, the tortillas are warmed ONLY in the warmer, not the grill, etc etc. As for the other prep areas, since no other ingredient has gluten, there is no reason for any other c/c.

If you are hyper-sensitive or concerned, you can always ask for new gloves and a new spoon.

IMHO, Chipotle is about as safe as it gets if you're going to eat out.

Best.

Costco: Ham steaks, cashews, supplements, TP and Papertowels, detergent, coffee, pulled pork, cheese, Boulder Sausage (the best!), Rudi's bread (sometimes we have found it), Hebrew National hot dogs, etc

Make sure it says gluten-free, but the varieties I've had are quite good and I had no reaction at all.

I know that they have Apple & Cinnamon (blueberry is slightly better IMO).

For a protein treat, I like a tablespoon of almond butter on them with syrup. Delicious!

I have eaten at Chipotle literally hundreds of times since being diagnosed and have NEVER had a c/c issue.

When first diagnosed, a manager literally let me read the ingredient list on everything, no issues other than the tortilla (I agree I wouldn't use the steam press due to c/c) and there's vinegar in red salsa...but most think vinegar is ok for Celiac patients.

That being said, here in CO, we tend to have cleaner locations than elsewhere (I've been to bunch across the country), so I worry less about c/c here.

I'm very sensitive and have never had a problem. Eat without worry!

I agree that PF Changs and Pei Wei (related to each other) do a great job overall.

That being said, as careful as I am, I did receive a "regular" noodle in a rice dish at Pei Wei a few months ago....and I've eaten there at least 25 times without incident.

I have to admit, I was pretty mad, it was after all my "go to" restaurant. But, I was able to put it all into perspective. I enjoyed 25 meals without incident and the manager was very apologetic. It's still my go-to restaurant.

That being said, if I was consistently c/c'd at one location, I'd be complaining to the district manager without delay.

I appreciate when a chain and/or restaurant advertises that they're gluten-free friendly, but I will hold them accountable if they want my business.