pixiegirl

Well lets keep in touch, the gastrocrom is helping me, I'll say I had some "gas" the first day or so from it but it does seem to be helping now, my entire GI system seems calmed down a bit, so I'm really happy about that.

I can't find a single doctor anywhere that has dealt with this disease before, my GI doctor has heard of it and tested for it (my biopsies were positive), but I think I'm her first patient with it.

Let me know how the allergy testing goes, we can share info.

Susan

No its not, it could be inhaled allergies as well, pollen, mold, dog dander. I'm being tested for those right now I came back with a lot of positives with the food allergy tests however all of the doctors at the "allergy" office say the same thing... allergy testing for food is sort of hocus pocus... You get a lot of false results so the allergy testing is only going to give you an idea of where to start. Right now I'm trying to do a rotation diet, where once you eat a food (say chicken) you can't have it again for 4 days. That goes for everything, every sort of food, potatoes, then not again for 4 days. You record how you feel, mentally, physically, etc and try and figure out which foods you react too. I started taking gastrocrom just 2 days ago and it seems to be helping a bit already. From what I understand it is a drug with very low side effects unlike many of the other drugs given for this disease (steroids). so you might want to ask about it. Its actually fairly rare and its hard to get good information and find a doctor that has any experience with it.

Susan

Hi I just wanted to say that your daughter isn't alone... I was first diagnosed with Celiac about a year and 3 months ago. I did improve by not eating gluten but I never got all better. About 6 weeks ago I was positively diagnoses with EC by biopsy. I'm really struggling at this time because after allergy testing there is hardly any food I'm not allergic too.

I just started doing a rotation diet to see if I react to the foods I tested allergic too and its not easy, there is virtually nothing I can eat. I just started on gastrocrom yesterday and have heard it often helps but its way to early for me to tell yet.

There is some speculation that my untreated Celiac (for about 11 years) caused the EC.

I'm here if you need to talk!

Susan

Well in this state (MA) we have the legal right to have all that stuff. I have mine and I always say that I'm just keeping my own records of my medical history together... I've never had a doctor's office act offended in the least. One or two made me sign a release but most just go to the copier and bingo I've got it.

Susan

Hi Jen,

Can you send me some information on IgG testing, I just went through IgE testing and I'm allergic to more foods then you can imagine, the doctor said he has never seen anything like my allergy tests. I'm right now trying a rotation diet to see what I react to but I'd love to try something else and see if I get similar results.

Thanks, Susan

I had a horrible bout of yeast infections and took diflucan a bunch of times, often back to back. I've never had a single side effect (and it did get rid of the yeast). I have a number of friends that have taken it as well and no problems for them either (just like you I asked them prior to taking it).

Susan

Oh wow, I thought I read that it WAS gluten-free! I took a cruise over New Years and I drank it often after dinner and I will say I didn't have any problems.... hmmm. I usually have gluten reactions within an hour and they are obvious... stomach pain, the runs, gas... I didn't have any of that. Oh well, maybe I lucked out but I find it hard to believe its loaded with gluten.

Susan

The reply I got from Avon was similar, sort of.... I asked about gluten and they sent me an e-mail saying... read the ingredients thats whats in our stuff. Hmmm.

Susan

Nancy! I lived very close to Echo Lane! I had a horse and road him down Echo to a kids camp that was there, they had tons of riding trails there. Small world, no?

Susan

Well I just had food allergy testing done and I reacted to so many things there is barely anything I'll be able to eat once I start my elimination diet. On top of Celiac I found out with the biopsy that I have Eosinophilic colitis. Its where white blood cells that are associated with allergy collect in various spots in your body. Thats why we did the allergy testing. Soon I'll start the elimination diet, however the reactions for my other disease the EC can occur weeks after ingestion, so I'll have to eliminate foods for 3 weeks before I add them back in.

So this is what I tested allergic to and will eliminate:

gluten (of course)

apples

banana

green beans

beef

chicken

corn

egg

lettuce

milk

oats

oranges

peanut

pork

potato

rice

soy

squash

tomato

tuna

wheat

yeast

I guess I will live on fish and broccoli but I'm really bummed and depressed about this.

Susan

Our whole foods gets their gluten-free bakery items on tuesday too and they are good, I really like the cookies and corn bread. Pizza crusts are ok.

I'm surprised that there are not more gluten-free groups in south florida and the one group they have has a one page web site and the only restaurant listed is outback and carabbas, sigh. Oh well.

susan

I wrote to the local celiac group and got a weird response, it said, basically, why would we have a list of restaurants, just go in good places and work with them. Very odd! I'll let you know what I find out I've written to a bunch of places that I'm interested in!

Susan

I have lists of gluten free restaurants for all over the country (I travel a lot) but don't have one for the Ft. Lauderdale area.... I can't even find a gluten-free local group in that area (hard to believe).

I know about the various chain places but does anyone know of anything else in Lauderdale?

Thanks for any help!

Susan

I've been raving about Anna's breads for a year! I love them too, sometimes I do them in my bread machine other times I put them in the oven and make rolls, its so good tasting!

Susan

wow, can you find out, I'd come up from the Cape for that!

Susan

I've reported my "method" before for avoiding this and I've had some tell me its overkill, however prior to my "method" I was glutened at Outback, since the "method" I've not been glutened.

In restaurants that advertise they do gluten-free (like outback, pf changs, Legal Seafood, some local places) when I walk in I say to the host/hostess that I need a gluten-free menu and when they seat me I ask if they could send the manager over to my table.

When the manager comes to my table I introduce myself and then butter them up a bit, that I've had great experiences in their establishments and that's why I'm back, but I'm more sensitive then most to gluten so I need to take extra care that the waiter and chef (I never say cook even if it is one) understand gluten-free. That puts a bit of the responsibility in the managers lap for not messing up. In every single case when I've done this the manager goes and speaks to the waiter and/or chef.

When I order I tell the waiter I need him to make sure it gluten-free for me and I ask him if he could make a notation on the order ticket for me that it must be gluten free.

When the food comes I reinerate, "Are you sure its gluten free" and almost every single time right then the manager comes to the table and assures me that my meal is gluten-free.

It all only takes a few minutes and it increases my chances of getting a gluten-free meal, not to mention I now know the managers in quite a few restaurants and because I'm very positive about their restaurants, their individual service, and I tip well, they are more then happy to see me and I get good tables to boot!

When I posted this before I had a few people tell me that it takes too long or that they don't like being the center of attention, I don't make a big deal out of this, its all done quietly but I'm not willing to be sick for a few weeks every time I eat out.

Susan

I eat in Boston all the time, I have great luck at the above mentioned restaurants and have had good luck at the PJ Changs (by the 4 seasons hotel between the common and the theatre district). Stephanie's on Newbury Street does gluten free and so does Grill 23. Actually I've had very good luck at any upscale steakhouse in town and virtually at any upscale restaurant with a chef.

I have eaten at Todd English's Olives in Charlestown and had no trouble getting plain grilled fish and veggies, they added a few sauces to them both that the chef made for me and I was fine, no gluten reactions. Also Flemings and the Capitol Grill does gluten-free.

Here is a list of a few other places;

Open Original Shared Link

Enjoy!

Susan

I've been gluten free for 14 months and I hardly even think about it any more, don't worry every single month it will get easier. My diet is far healthier then it was before so I'm feeling better then ever but I have found some gluten free treats that get my over the times when I want something sweet. At first it can be mind boggling but really its not hard at all.

Susan

celiac3270 listed me in his female list, which of course is correct I am a girl but I think thats a given seeing how my "handle" here is pixiegirl and I sign my posts "Susan". After spending a long day with my boyfriend today I thank god I'm a girl ... (wink)

Susan

Nope I don't miss things that I hardly every ate (or didn't eat), I'm assuming because if I didn't eat them often I didn't really like them. I miss the things I use to eat all the time, pizza is number one and I've tried every gluten-free pizza crust I can get my hands on and they just aren't right. Believe it or not, I'd rather do without, but I sure do miss it.

Susan

My daughter has life threatening allergies to peanuts and tree nuts and is trying gluten-free, so thanks for this info!

Susan

Such a small world, I live on Cape Cod but I think I know the answer to this, its the Itallian place... they have gluten-free pasta too. Also I belive there is a PF Changs in the mall too.

susan

I had mine done a few weeks ago, I didn't have any "spray" and I didn't have a sore throat. I went to sleep and woke up and other then being loopy from the anesthetic I was fine. It was easy.

Susan

My original internist did a single Celiac blood test (I'm not sure what) but I went gluten-free and felt tons better, I changed internists and also paid to get my DNA tested (I have 2 main celiac genes). My current Dr. feels that with the DNA test and how sick I get when I do accidently ingest gluten there is no doubt that I have Celiac. She sees no need for me to eat gluten for months to get a positive blood/endoscopy test.

My GI also mention that the Celiac test my previous doctor did is worthless. I did finally have an endoscopy but for another problem and it was a year after being gluten-free, my GI said there were no signs of Celiac so I'm happy that the diet is working for me. That's all I need.

Susan

I'm pretty obsessive about staying gluten-free, I'd never, for example eat something without knowing whether its gluten-free or not. I've always had a mostly healthy diet , I don't eat many processed foods so its fairly easy for me to be gluten-free. I don't often eat things like cereal and when I do want something like that its usually LifeStream waffles and they clearly say gluten free on them.

I get so sick when I get glutened and I stay sick for a good few weeks that I just won't risk it anymore, I can't deal with being that sick all the time. So being really careful has just sort of evolved over the past 15 months.

However that being said I didn't get all better so I continued seeing my GI and I did find out there is something else wrong with me so don't discount that either, but I'd go totally gluten-free first and see how you feel after 6 weeks or so.

good luck, Susan