pixiegirl

My daughter was diagnosed at 14 and now at 26 I can tell you she has a full and active social life.  She drinks gluten-free beer, wine, Tito's vodka (I'm making her sound like a big drinker, she isn't!) you can drink being gluten-free. 

I was diagnosed before anyone knew what it was. There was no gluten-free food and very few restaurants would help me. So I can tell you that in this day and age it's not that hard. Every grocery store has gluten-free food. Many restaurants have gluten-free menus and/or understand it enough to modify their food for you (especially restaurants with a chef as opposed to some teenager cooking!). I almost never get glutened at restaurants anymore. I do however at people's homes so I try and steer clear of that.
 

You can have pizza, bread, cookies, and so forth it all comes in gluten-free versions and if you ask around here you'll get some great advice on the products that taste the best.

You'll get sicker if you don't follow the diet. You can do this and have a social life. 

Ha! Maybe it is MA! I don't mean to make light of the issue, I know for someone just diagnosed it all can seem daunting but it took me 11 years to get diagnosed and by that time I was really sick. I thought, at times, that I was dying so when someone told me, "hey you can feel all better by not eating gluten." Well, that just seemed simple to me at that point. 

I agree with the post above, getting the gluten out of your system doesn't take that long but the damage it does can last a long time. 

I get glutened occasionally at restaurants but not often. I have a few I trust and eat at with very few problems. At new places (if I'm traveling) I make a point of not only taking to my server but usually the manager too, I go out of my way to do my best to get a gluten free meal. My biggest problem is actually at other people homes. Many decent restaurants today have systems in place to get people with food issues the meal they need. But friends/family - forget it. Their homes are usually filled with gluten (none in my house) and they don't understand cross contamination.

When I do get glutened I drink a lot of water to try and flush it out and I take a lot of probiotics. For me high end, 5 ingredient vanilla ice cream settles my stomach!  Something about the cold and creamy. I've had people tell me dairy isn't good for me when I've been glutened but I know my body and it works. Fortunately I don't get glutened much anymore. After that, it's just waiting, sometimes weeks for all the glutening symptoms to go away.

I was diagnosed so long ago that I didn't have any of the options that are available today. I curious about if you are trying to be diagnosed as Celiac, if you are just unsure what being on a celiac diet involves or are you gluten free and not feeling better?

My doctor at the time of my diagnosis told me he was sure I didn't have it because it was so rare (remember this was a while ago) and he furthermore went on to tell me that if I did have it I'll be sick a lot because no one can fully stick to the diet. 

I got a new doctor, got diagnosed and have never, knowingly, had gluten since. I did all the research myself and figured it out without any help other than the internet and groups like this one. Just stop eating gluten!

Sadly doctors are not always filled with information. I know around here we have a local celiac group, very helpful, and a few dietitians that specialize in Celiac diets. I attended some of the local Celiac meetings and used this group extensively. 

I hate that people say "it's so hard to stick to a Celiac diet."  Maybe they didn't feel quite as bad as I did, it wasn't hard for me. Of course, I miss some things that I can't really get gluten free (sourdough bread is not the same) but I don't find it difficult to be gluten free I feel so awful, for so long when I get glutened.

This is a great group that will be willing and able to help you on your journey!

I'm a gluten-free vegetarian. That being said I was taking prednisone for 2 months (unrelated to my celiac) and got a diet a friend was doing and tried it to lose the 10 lbs I gained from the steroid.  I ate eggs for breakfast, hard boiled or an omelet. I had a salad with Beyond Meat Chicken (fake) for lunch and soup I made with some veggies and tofu for dinner. 

My brain fog was quite a bit less and I had crazy amounts of energy. Being a vegetarian I just can't eat that way all the time. 

Susan

I just had dinner there myself a couple of weeks ago.  They do a good job.  I feel really lucky that we have all sorts of gluten-free choices ont he Cape.  I was in NYC last week and had some great dinners there but it required a lot of research to come up with the right places.  I guess because the Cape is smaller it's easier but I really do feel we have a lot of restaurant owners and chefs that are embracing what the diner wants.  Many are working with us gluten-free folks and allergy issues too (my daughter is both gluten-free and has a life threatening peanut allergy).

Susan

Our real season is July 4 - Labor Day.  We certainly do have people coming on weekends now but there is no back up at the bridges and the roads are still traffic free.  After Labor Day you don't really need reservations anywhere, we do have a nice fall season but its not crowded (meaning no traffic back ups).

I probably won't go on a weekend during the season, I'll do a Tuesday or Wednesday.  But thanks for the heads up it's always good to know!

They are on my list and I've not been there yet.  I'm going to take my mom over there soon their menu is so nice!

Susan

I know this is an old topic but the Cape Cod season is going to start again soon.  On the first page of this thread my gluten-free Cape Cod list was mentioned and I really appreciate it.  I do charge $3. for it and I was sorry to have to start charging at all but it's time consuming and I do a lot of work to keep it up.  I email restaurants all the time, I eat at them (a fun part of this "job"), I've worked with places to help them start a gluten-free menu and after all that I update the list, usually monthly.   

I try to keep the list as current as possible (I just sent out 20 gluten-free inquires to newer restaurants).  It's 18 pages and counting now!  I'm always happy to discuss various restaurants via email (or here) and I'm more then happy to help with travel plans or ideas of things to do while you are here.

Again, thanks for the mention!

Susan

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Hmmmm very interesting I'll have to keep an eye on this.  It's always something!   

Really?  Gluten symptoms with MSG... interesting.  is MSG contaminated with gluten or what?  I know a lot of people have very serious sensitivities to MSG.  I have always tried to buy food without it  but I've never really noticed a problem before.  I'll have to pay closer attention.  Thanks!

Ugh, I feel for you with the leg of lamb thing.  Stuffed don't do it.   I got better fairly quickly so I am leaning away from food poisoning. I think it has a longer sick time then what I had.  And usually with gluten I get sick for days, unless the dose was super tiny.  I was still funky yesterday and feel a little mentally out of it today but... I still felt better then I usually do with a glutening.  So maybe it was the spice... and I just got a little bit of gluten.  I'm giving it away to a friend so I'm not going to try it again to find out.

My gluten hangover cure starts as soon as I know I've been glutened.  I start by drink a lot of water.  I take a couple of probiotic pills right away.  Then I have very high fat vanilla ice cream.  Don't ask me why but something about the cold and I feel like the high fat content does something to my insides that not only makes me feel better but shortens the amount of time I feel better.  (or maybe it's my excuse to eat ice cream).  More water until I go to sleep, 2 more probiotics (the dosage is 1 per day but I've been told they can't hurt  you). 

Oh and someone said it could be CC.  My house is totally gluten-free including my dog's food.  This is a new house for me, (I've been here 5 months). First I had a cleaning company come in and totally scrub it down, I directed them in the kitchen.  Then the next day I did the kitchen again.  I've not had any problems with any CC since I've been here.  None of my pots, pans, crock pot, utensils have ever been used with gluten.

Next morning I do the same thing, water, probiotics, ice cream and toast.  For me this really does shorten my sick time.  Thanks for the info, I wish I knew for sure.

Susan

I thought about the lettuce too... it looked fresh but who knows.  I'm leaning toward the seasoning.   Thanks for your thoughts!  

I've been on this list for a long time but life has been very crazy (both good and bad) and I've been gluten-free for a long long time now so "mostly" I have it down pat.

Last night I had made a salad for dinner.  It was made with bagged lettuce.  A variety of cut up veggies.  I cooked a plain chicken breast and put some McCormick "new" Southwest Seasonings blend on the chicken.  For a salad dressing I used Hidden Valley Ranch.

The salad dressing says Gluten free right on the label.  I've never had a problem with McCormick spices (but I don't usually use blends either) and the label looks fine on this one.

Immediately after I ate the salad I started getting sick with classic (for me at any rate) symptoms, gassy, pain, slightly dizzy, runs.  6 hours after dinner I was still having the runs (sorry for being graphic).  I woke up this morning ok but slow, physically and mentally.

I guess the question here is has anyone had any problems with any of these products?  Could the bagged salad have been bad, these symptoms are not unlike food poisoning either (but I think that usually comes with barfing and I didn't do that)?

I'm ready to throw out the salad dressing and spice because I'm afraid to eat them again, I hate getting glutened.  So I guess before I do toss them I'm trying to figure out if there was another reason for getting sick.

I'd like to add that my entire house is gluten-free and has been for ages.  None of my cooking things, cutting boards or knives have been used with gluten.  So I don't believe it has anything to do with cross contamination.

Thanks for any insight or ideas.

Susan

My daughter is going away to school in a month, she will be living in the dorms. We have a lot of favorite salad dressings that we use at home but it isn't really practical for her to carry a bottle of salad dressing in her purse every day.

What I'm looking for are any gluten free salad dressings in individual packets. I once bought some Kraft packets in Florida and they even said Gluten free on them. However they don't carry them in the stores here in MA.

I'll buy them online but when I go to various sites that sell them, like minimus.biz or Amazon I can't tell if they are gluten free or not.

Does anyone have a resource of gluten-free dressings that I can order in individual packets?

Thanks so much!

Susan

I'm sorry that you have to forgo this holiday. After my daughter and I were diagnosed we started making the meal at our house. That way I know everything is gluten-free. Maybe you should try that next year.. if you don't have family nearby and are worried about eating by yourself... About a month prior to the holiday I start telling people that my turkey day dinner is open to people that have no place else to go. I ask my close friends, people from work, my daughter's friends... its shocking how many people will say yes!

I do all the cooking that way I know its gluten-free. I do a fairly simple, traditional meal and no one complains or misses bread stuffing (I use a rice stuffing) I make gluten-free corn bread too. People always ask, what can I bring..... I say wine, flowers, coffee beans, ice cream, etc. That way they all feel useful and I restock my wine cellar!

I hope every one has a nice holiday.

Susan

First of all I think I might start looking for a new doctor, regardless of your decision about getting scoped. For a doctor to be so dismissive and such, not good.

I didn't have a biopsy at first. I had a dna test, mild blood test and the diet helped me immediately. However, some years later I was still having very minor GI issues... I was 99% better but not entirely. So I go to see a GI doctor and they recommend scoping both ends, which I did. I'm glad I did.

First off I'm older so this counted as my first colonoscopy and when they went in they took biopsies and found out I had another potentially serious issue, eosinophilic gastroenteritis. I had 8 raw open sores in my stomach and also some in my intestines.

The good news was there were no signs of Celiac so I was managing that well.

Now I'm treating the EG issues and I'm feeling a lot better.

So maybe my advice would be, try the diet for a few months, get another blood test to see how your doing and if you're having any GI issues after being totally gluten-free for a while then I'd consider the scoping.

Just so you know, mine were easy, actually the worst part was that ghastly stuff you drink to clean yourself out, tastes terrible. But I was completely out for the scoping and was fine about an hour after, I went home and did laundry.

Susan

I don't shop at Walmart however I hope someone as notified them about the errors in their list. Its good that they are trying... in these economic times a lot of us can't afford Whole Foods or Trader Joe's but they need to get on the ball!

Susan

I have EGID, all over my GI tract really. I have good times with it and bad. But over all since I went thru a ton of allergy testing and now try and avoid the foods I'm allergic to (there are so many its difficult) I'm doing better. My allergist gave me an Rx for gastrocrom, its a liquid you put in water before you eat and its stops mast cells from happening (so really stops or minimizes the allergic reaction). I've been on it now for about 3 years and I've had far fewer problems since I've been taking it.

Its got very few side effects and risks and my Dr. told me I can take it for the rest of my life without any real worries. You might want to talk to your Dr. about trying it. It doesn't work for everyone and it takes weeks to make a difference, at least a month in my case.

I never took steroids for this, at least not yet. I got close but I wanted to try to avoid them, they are so powerful and have so many side effects. Between watching my diet and the gastrocrom I'm doing fairly well.

Susan

I don't do Amy's any more I get sick every single time I eat them. Bummer.

Susan

You mean if I didn't have Celiac and could eat it with no problems? Of course I'd have it. Its hard for me to believe people that say they wouldn't!!!

I have been gluten-free for almost 10 years and I too look at gluten food and know it makes me sick however if I "knew" it would not do so I'd eat it occasionally. I do agree with the poster above who said being gluten-free has made them learn about all sorts of new foods. That has happened with me too and I love my diet now however I'm sure I'd go out with friends occasionally for pizza or drink so really good German beer. And I'd certainly have some sour dough bread now and then. But without any doubt my focus is on health for the most part and my diet now concentrates on fish, veggies and fruits. It would not play any major part in my diet a second time around.

But yes... I do once in a while take a walk on the wild side, sour dough and beer!

Susan

I have Celiac, eosinophilic gastroenteritis and a ton of food allergies. I was not diagnosed with Celiac until I was in my mid 40's but had GI problems for a good 10 + years prior, so that may have contributed to my other problems.

Susan

I have a totally gluten-free house, even with guests. There are tons of gluten-free options that will satisfy any gluten eating person. Just say I have a disease and I have found the only way I can stay healthy is if I keep my home gluten-free. I resisted that for about 4 years but never felt 100% so made the change and I feel a lot better.

Its your home, make the rules.

Susan

Ok I've been gluten-free for many years and am having very few issues food wise. After having a lot of hair loss and skin rashes I'm finally going gluten-free on all external products.

I've read here that Gariner, sauve and dove hair products label clearly. Any others that you recommend for very dry hair?

Lastly I've used La Mer face lotions for years, I attribute them to why I look 10 years younger then I am. I called Estee Lauder, they own La Mer and they told me La Mer contains no gluten however wheat is clearly listed on the label!

So I am looking for a face moisturizer that is very very rich and moisturizes all day long. I've tried Olay and my face gets flakey after a few hours (and I don't know if they are gluten-free or not). Does anyone have any suggestions for any products for very dry skin?

Thanks for your help.

Susan

Thanks all, I'm going to check out that web site because I know I have the symptoms of a thyroid problem however I have been tested for it every single year and I'm always told (by two different doctors) that its fine and that the levels are well within normal.

I've always had dry skin, even before I had thinning hair, I had it in my 20's!

Susan