Attended Chicago Gfg Mtg.

[westiepaws]

Hi Everybody, I went to my first Gluten Intolerance Group meeting in Chicago this past weekend. It was GREAT. If you haven't been, it's very helpful to a) learn more about celiac and taking care of yourself, and meet other people w/the same challenges you have.

I also attended the physician's update portion since I am studying to be a nutritionist, and it was very eye-opening. Did you know the largest number of celiacs diagnosed in an age group is women 50-64? That's because fatigue and anemia are often early celiac symptoms -- but drs. just write them off in menstruating women to monthly blood loss!!!! Our society is so bizarre -- guys don't have to tolerate sexual dysfunction for five seconds-- they can get a handy pill -- but young women of childbearing age are expected to just live with chronic anemia!!!! This is quite upsetting and we should not stand for it, ladies -- and men who care about their ladies.

Tell any of your women friends who struggle with chronic anemia to find a dr. who will get them tested for celiac!!!

Okay, now I'm off my soapbox. Thanks for listening!

For those of you with multiple food allergies: GIG meetings are still a challenge. I accidentally dairied myself trying a lovely pizza crust. And many of the gluten-free foods have soy in them, as well. (I'm allergic to gluten, casein and soy). The chefs have to know the ingredients of what they make or buy anyway, because they have to avoid gluten. But it is hard to find them once the food is out -- not to mention, if every multi-allergy person asked them what was in the food, they'd be overwhelmed!

I have suggested to the GFG organizers that by each dish at the buffet, they have the chef list the ingredients on a little place card. It's not hard -- Whole Foods does this with their prepared soups and salads and dressings. So many celiacs have multiple sensitivities -- just listing the ingredients would help them avoid other substances. There still would be plenty to eat for us multi-people, I'm sure!!!

Also, one final note -- GFG is organized and run by Cynthia Kupper, a RD; and one part-time employee; and Cynthia's mom, who volunteers 40 hrs. a week for GIG. This small group and the advisory board have done some amazing things for people with gluten issues. We should all write them and thank them for their dedication!

westiepaws

[celiac3270]

I was there, too! Maybe I saw you but of course, didn't know who you were. It was a terrific conference and I agree that GIG is a terrific group--in my opinion, the best national celiac support group. I was skeptical about how much I would learn--I thought that it might be a more basic thing for newbies, etc, but I learned so much!

-celiac3270

[westiepaws]

How cool! I worried about that, too, would it all be too basic, but WOW, it sure wasn't at all. Everyone was so nice, too! I had red hair and black-framed glasses, but in a celiac crowd that doesn't help much, as there are so many redheads in the group!

[celiac3270]

--

[westiepaws]

celiac3270, I am certain I saw you -- I went to at least one of the forums and there was a younger guy there, and I remember being surprised and impressed that he was! Particularly because this person, most likely you, did NOT seem to be there at the behest of a parent. Very cool!

Yes, the scheduling should be such that students can attend! And teachers! I teach some college classes as an adjunct instructor so I better check my calendar.

westiepaws

[UIDancer]

I've been searching high and low for a group like this! Where can I find info on the group you just attended in Chicago??

Thanks!!

[celiac3270]

--

[celiac3270]

I've been searching high and low for a group like this! Where can I find info on the group you just attended in Chicago??

Thanks!!

The one we went to and the group I would most recommend is the Gluten Intolerance Group (GIG). Website: Open Original Shared Link

[mela14]

Westie,

You said that you have a lot of food intolerances. I am in the same boat. I am intolerant to gluten, soy, eggs and dairy. I also have IBS and have a hard time digesting a lot of other foods...especially the starchy ones like rice!

I was working with a nurtionist at Columbia Presbyterian for while but then stopped because of other health problems (also needing dietary restirction).

Lately I have been eating lot of corn but have been having the same familiar allergic like symtpoms. I hope that i am not having a problem with that too!

Any suggestions on where to go or when I can get more information on multiple food intolerances and what to eat?

i've been having a reaction for a few days with abdominal pain, gas, headaches, fatigue, vertigo, muscle pain and muscle cramping.....all the symtpoms of when I eat gluten or soy!

The other night I had some frosting of cake that my dad made...the smallest amount....and have been sick since. I was up all night sweating and feeling like I was poisoned! I didn't think the little bit of dairy would bother me but I guess the gluten form the cake seeped in..yadda...yadda....I konw I shouldn't have....and I've been doing so good! what was I thinking. I'm still feeling sick but not getting better actually worseform Monday night.

I started to think that maybe the corn is getting me sick now too!

I did the york allergy testing and of course all of the above came back high positive and corn was a weak positive.

I just don't knwo anymore.........gotta get this heart to stop beating so fast!

any advise would be welcome!

thanks,

[cdford]

celiac3270, check with your school system to see if it is possible to take your finals a week early in order to attend an educational seminar such as this one. Different systems have different policies, but if they are aware of your medical issues they will often agree. Just provide them with a well articulated argument for its educational value. I am certain you can handle that from reading your posts.

[celiac3270]

celiac3270, check with your school system to see if it is possible to take your finals a week early in order to attend an educational seminar such as this one. Different systems have different policies, but if they are aware of your medical issues they will often agree. Just provide them with a well articulated argument for its educational value. I am certain you can handle that from reading your posts.

But in private schools, too? I think it would be harder to do there than in the public school system.

[westiepaws]

celiac3270, if anything, a private school should be more willing to let you go, *I* think. When you write out whatever you submit making this request, work in something about how as a private school you know they have extremely high standards and want their students to excel and live healthy lives -- not just in the classroom, but outside, as well.

[westiepaws]

Hi Mel! Yes, I am allergic to dairy, soy and gluten. My mom is allergic to those plus corn and sulfates. The person who has helped me (and my mom) most is the nutritionist we see. She is really well-versed on where in food bad things are hidden.

Mom and I have not had any kind of food allergy testing, because our endocrinologist is wary of false positives. We found out we are allergic through testing of stool samples by EnteroLab (www.enterolab.com). You can do the samples at home and mail them to the lab, and they will e-mail you results. Basically, if your body is allergic to something, it makes antibodies to the substances in that food, and those antibodies appear in your stool, if I am stating this correctly. With an antibody, it's there, or it's not -- that is why our endocrinologist likes those tests more that regular food allergy tests. I know for sure they can test for egg and corn allergies, in addition to the ones I have.

This is long but I am going to talk you through things the way our nutritionist does. You basically have to turn into a food detective. Once you get your brain thinking this way, it really helps you protect yourself from allergens.

******

First on the frosting: Was it storebought, or was it homemade? In general, given your list of allegies, you want to **STAY AWAY** from any storebought products like this, candies, etc. Even just a taste (I know, it is sooo hard for me, too!!) The frosting probably not only contained milk products, but some gluten, too, for thickening. Maybe even some soy (in the form of lecithin -- not all lecithin is made of soy, but sometimes it is. Labels are starting to say whether the lecithin in the product is soy; but let's face it, the manufacturers have until 2006 to get their act together on that, soo...)

This week I just hypothetically looked at about 70 percent of the food labels on the prepared candy packages at my Publix. With just my three allergies, I could not eat ANY of it. Frosting is not that different from candy.

In general, we are just so much better off avoiding any sort of prepackaged foods. I hardly buy anything prepackaged anymore.

THE GOOD NEWS: Downstairs in my kitchen I have a chocolate frosting recipe where you can sub. almond milk for regular milk and it is free of all of my other allergens -- I think yours, too. I will post a link if not today, tomorrow.

Okay, now let's talk corn.

Do you know for sure that it is gluten-free? And free of the other allergens you need to avoid? If you are buying ears of corn fresh at the store, I would think contamination probably would not be an issue.

However, if you are eating things like taco shells or baked products, etc., or canned corn, or frozen corn in any kind of sauce -- those actually sometimes contain modified food starch, which can contain gluten. Even corn starch itslef can contain gluten.

Sometimes it is not that the corn product is made with gluten; sometimes it is just matter contaminated by gluten from other products made the processing facility using the same machinery.

You can buy taco shells and corn starch, etc. that are gluten-free at places like Harry's and Whole Foods, and probably also off of the Gluten-Free Mall here at celiac.com.

I hope that helps, at least a little!

westiepaws

[westiepaws]

Mel, P.S. -- try to rotate foods if you can (I know that is SO hard with multi-allergies, believe me!). Somewhere I learned (and I can't remember the source, I apologize) that eating a food day in and day out can lead one's body to develop allergies to it. That's why the dieticians tell us to eat a variety of foods.

And by the way, I am a total BAD example on this because I found out I can eat most of the food at the Chipotle restaurants, and I have eaten there three times this week because work has been so busy ....don't tell my nutritionist!!! More importantly, don't tell my intestines!

Hugs,

westiepaws

[celiac3270]

I got a report...someone tried to post via the report button, and it came to me:

celiac3270,

You have been sent this email from lisard88 via the "Report this post to a moderator" link.

------------------------------------------------

Topic: Attended Chicago Gfg Mtg.

------------------------------------------------

Link to post: Open Original Shared Link

------------------------------------------------

Report:

I'm new to all of this website (today actually) but have been reading it for 2 or so hours in total amazement.  There are so many people with so many different answers to a lot of my questions!  This is so great (for a bad situation). 

I've been sick for probably 15 years and finally a doctor has decided that she thinks I have celiac disease.  I've only been gluten free (or at least I think) for about 10 days with no relief of symptoms.  I was getting discouraged until I started reading everyone else complaining about months of gluten-free with no relief. 

And then to hear everyone talk about multiple allergies (not just gluten) is crazy!  Boy are we unlucky!  My husband can eat everything under the sun but I put anything in my mouth and I feel terrible.  But it is reassuring to know that there are so many others and they actually have answers (as I mentioned drs couldn't ever figure anything out).

Now that I have gone on and on, I have a question.  You guys seem so confident and know all these "secrets" (for lack of better word) about allergies and what to do and not to do...how long did it take you guys to figure this out?  I am just hopeless b/c I feel like I'm going to learn that I'm allergic to ALL foods (which I sort of had accepted and dealt with the sickness for so long).

------------------------------------------------

Regards,

The Celiac.com Forum Home (Celiac Disease and Gluten Free Diet Forum) team.

Open Original Shared Link

Thank you for your response, westiepaws

[dperk]

I also seem to have multi food allergies (soy, gluten, diary, eggs..........). All starches bother me. I have found the SCD diet to be helpful. I was a vegetarian, but have started eating meat because I have nothing left for protein except nuts......... Corn and rice bother me. The SCD diet is the closest I have come to finding the foods that my stomach can tolerate.

[mela14]

What is the SCD diet?

[mela14]

Westie,

Thanks for the detailed response. It was very helpful to me. I don't eat anything with preservatives or any type of store bought frosting. My dad had made that...anyway, after much detective work I found that the BEANO that I had ben taking, at my nutritionist's request was causing me to get sick. I am very allergic to molds! I didn't read the fine print on the bottle aobut how it is made.In addtition to the abdominal pain, muscle pain, nausea and bloated tummy I was waking with and tichy throat, terrible sinus congestion (couldn't breathe...Nostrils wre closed shut!) and headache.

after I read the ingredients (with my glasses on this time) ont he back of the bottle I recognized the word Aspergillus Niger from reading it this board so I did a search. I gathered as much info as I could and am now convinced that is what is making me so sick. I've been taking it all week and have gotten so sick all week. I actually started to feel a little better last night......I DID NOT take the

Beano. I did a lot of on line research and found that it as used to ferment citric acid...something else that makes me really sick and I never knew why. it is also used to make enzymes........lactaid was making me sick and I have never been able to take any enzyme supplement (no matter how much I tried at everyone's suggestion).

With my online research I have found so many other sources of it and am keeping a list. skbird form this board has been very helpful and provided me with a lot of info. Others have also emailed me with suggestions, like you that i have found helpful.

Each day I am learning and have realized that I will ahve to be the one to help myself. I can't keep getting the sick the way that I do. The doctors have not been there for me and have not helped at all.........actually in some cases they have made me worse. LIve and learn.

thanks again, I appreciate you help!

[celiac3270]

What is the SCD diet?

Open Original Shared Link

[westiepaws]

Mel, last night I read about three issues of a magazine called Living Without -- have you heard of it? It had so much helpful info., and there was an article on MOLD allergies! It and it mentioned foods to be careful about if you are allergic to mold. (I've not been tested for mold allergies, but was constantly sick off for six mos. after some major mold exposure several years ago, so my dr. said consider myself allergic.)I will see what issue and post that. Also, you might want to subscribe -- www.livingwithout.com, I *think*. It has lots of helpful recipies and helpful information on all kinds of food intolerances, not just gluten.

westiepaws

[westiepaws]

Hi LisaRD88, don't despair --- you may very well *not* have multiple allergies. You could very well only have gluten intolerance and it's just messed your intestines up so that everything you eat makes you feel ill.

Also know that if you do find out you have more than one sensitivity, you will learn how to handle it; you can do it!!! At first it is overwhelming, because there is a lot to learn, and after 15 years of being sick, you are feeling lousy, which is totally understandable. But you *can* do it. I haven't been here all that long; didn't find out for sure I had the sensitivities until March. I started learning about them in December 04 because my mom was diagnosed.

Also, you will have up days and down days. It's a huge life change, even if your only allergy is gluten. Know that food intolerances can mess with your body and cause depression/mood swings/etc; your body will be adapting, you will accidentally get glutened, you will fall of the wagon eat a burrito or etc. out of total sorrow and self-pity (and BOY will you regret it in the morning, speaking from personal experience !!!!)

But the thing is, as you change your diet, you will feel better and better! Your body will heal! And you will realize there is so much value in following whatever diet you need, and you will learn how to meet your food needs. And it will be worth it. Also, you can come here and sob or ask for advice or celebrate successes and that REALLY helps. Once Katie's USA's response talked me out of eating a chocolate eclair. Instead I went and found a recipe for an allergy-free brownie. Yum!

*******

Here is what has worked for me -- and by the way, I am a total newbie compared to most people here, so I'd recommend starting a totally new post titled "how did you learn what you needed to know?" so that more people can respond, in case they don't check under this topic title.

***find a good dr. to walk you through this -- somewhere on this site there is a list of good drs. and I think there may be a list of NOT recommended drs., too. This means a person who will go the extra mile with you figure out what's going on and never gives up.

***definitely find a good dietician or nutritionist to help you. As you can tell from Mel's post about the Beano experience she had this week, it is EXTREMELY important to find one who specializes in this area and has put in time to learn as much as he/she can. Not all dieticians know all the ins and outs of celiac. For what it's worth, for me and for a friend of mine who is lactose intolerant -- our drs. also have food intolerances, so they totally "get it." At the conference I posted about here, the leading drs. in celiac in the US were speaking -- and many of THEM had celiac, too.

***check out the website for and consider subscribing to "Living Without" magazine. Incredible recipies, plus all kinds of advertisers are listed in there.

***read "Dangerous Grains" and "Against the Grain."

***read as much as you can here, read on the internet, etc. Check sites for Gluten Intolerance Group, Celiac Sprue Assn. -- do Google searches to find groups and see what groups are listed at other parts of this site. I *still* have not explored this entire www.celiac.com website, by the wa!!! It is HUGE. Pace yourself.

***finally, start ordering some gluten-free/etc. foods by mail from places you see advertised here. It is SO encouraging. I have found some Enjoy Life chocolate chips at Gluten-Free mall that also are casien and soy-free, so I can eat them. Man, that makes life worth living!!! "Against the Grain" talks about how you can take the extra cost of gluten-free foods off your tax return if your dr. writes a letter about your disease, too.

Anyway, sorry so long, but this is how I started. You really can get a handle on it; just be patient w/yourself. Hope it helps!!

westiepaws

[mela14]

Westie,

thanks for your continued support. You just make so much sense and are very encouraging! we need more people like you ALL around us! I hope that I can be ther for you when you need it.

Hope everyone has a great 4th of July............