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Nw Chicago Suburbs

Gamecreature

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Gamecreature Rookie
Gamecreature
Posted

I'm looking for anyone interested in starting a support group in McHenry county Illinois. So far, the groups that I've found in the Chicago area are too far away. I'm looking for something closer to Crystal Lake, Algonquin, Woodstock, McHenry, etc.

Anyone else out there?

  • 7 months later...
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emorgan816 Newbie
emorgan816
Posted

I'm in McHenry too. Did you start a group or did you find one yet?

Elizabeth

tom Contributor
tom
Posted

Ohhh man! I'm not there now but I grew up in Mt. Prospect and used to visit/spend the weekend w/ friends just outside the town McHenry.

Good times.

Good luck finding more for your group!!!

I've heard recently there are celiac/gluten-free groups on facebook.

Maybe that's another pool of potential McHenry-ers. (-ites?) :)

  • 1 month later...
brenda07 Newbie
brenda07
Posted
Ohhh man! I'm not there now but I grew up in Mt. Prospect and used to visit/spend the weekend w/ friends just outside the town McHenry.

Good times.

Good luck finding more for your group!!!

I've heard recently there are celiac/gluten-free groups on facebook.

Maybe that's another pool of potential McHenry-ers. (-ites?) :)

I live in the Rockford area and am always looking for someone to talk too about celiac, I was first diagnosed when i was 18, and then rediagnosed at the age of 32, I am now 34 so for 2 years now I have been gluten free, it is very hard to try to explain to people what you can and can't eat, and why. At the age of 18 they didnt' know a whole lot about the disease and basically sent me home telling me not to eat bread, cereal or pasta, but at the age of 18 who wants to hear that, so I ate what I wanted when I wanted and have suffered dearly for it. So now at the age of 34, I am trying to recover from the years of damage I have done to my body. I have been diagnosed with H Pylori, osteopenia, fibromylagia, endometriosis, migraines, depression, celiac sprue, and i'm sure i'm forgetting something, and I am waiting for tests results from Lyme disease test. Having a website like this to read and learn from other people sure helps to make u not feel so alone. Thanks for listening and if anyone is in the area, let me know...

Bren ;)

tom Contributor
tom
Posted
I live in the Rockford area and am always looking for someone to talk too about celiac, I was first diagnosed when i was 18, and then rediagnosed at the age of 32, I am now 34 so for 2 years now I have been gluten free, it is very hard to try to explain to people what you can and can't eat, and why. At the age of 18 they didnt' know a whole lot about the disease and basically sent me home telling me not to eat bread, cereal or pasta, but at the age of 18 who wants to hear that, so I ate what I wanted when I wanted and have suffered dearly for it. So now at the age of 34, I am trying to recover from the years of damage I have done to my body. I have been diagnosed with H Pylori, osteopenia, fibromylagia, endometriosis, migraines, depression, celiac sprue, and i'm sure i'm forgetting something, and I am waiting for tests results from Lyme disease test. Having a website like this to read and learn from other people sure helps to make u not feel so alone. Thanks for listening and if anyone is in the area, let me know...

Bren ;)

Hi Bren!!

Hooboy have WE ever got some similarities in medical history.

I had a stretch where I knew I had celiac, but somehow was under the ridiculous and ultimately incredibly life-changing impression that I could ingest some small amount of wheat/gluten that didn't cause much symptoms that day or the next.

I had it nailed down for how much gluten was 'under the wire'.

I can barely think much about typing out a list of symptoms from the worst times, '03 mainly, as if I think of it too much I begin to truly imagine & remember and it *still* can make me cry. And I'm really *not* a cryer, I swear.

If the Lyme test comes out positive, you MUST (I am NOT kidding) join the thread here w/ a number of ppl dealing w/ Lyme.

Wonderfully welcoming ppl - it's a community.

**Warning!!!** do NOT try to read from the beginning and catch up. The thread is over 1400 pages; over 20,000 posts.

Just jump in @ Open Original Shared Link

If u have Lyme, it is THE thread for you. Even if you don't have Lyme, but have mystery issues that need to be found, it's pretty darn good for that too.

Rockford!!!!! :)

When I was little my family, for some reason, used to occasionally go there to stay at the Wagon Wheel Inn or whatever. Does the name ring a bell?

As far as talking, tho I'm not in Illinois any more, I wouldn't mind some talking! I just finally seem to have found my FINAL food intolerance (soy), and looooooooove to talk now, after far too many yrs of having trouble communicating, often even trouble getting thru the mini-conversation w/ a checkout clerk successfully.

I even had to change my calling plan to one w/ like 10x the minutes!! For years, until 7-8 wks ago, I'd go entire months w/ <20min on ph!

Conversations have become fun & I talk, by any method, constantly now.

Lost too many friends over last 8-10 yrs (very uncommunicative as illness worsened) to fill my new conv quota.

Soooooooo, I'll certainly volunteer to talk to a NW suburb celiac w/ a similar history to mine!! Email, IM (I have aim,msn,yahoo), ph, whatever - just not this forum's PMs. I surf on a sidekick ph and the PMs here are horribly slow pageloads somehow, tho mostly just since a forum software change a few wks ago.

Lemme know! :)

brenda07 Newbie
brenda07
Posted

Thanks for such supportive words, some days I feel like my head are just in the clouds and I just don't want to talk to anyone about anything.

So far the only other allergy I have asked to be tested for is to see if I was lactose intolerant and that can back negative.

My gastro Dr. seems to think I should try accupunture sure...well he's not the one who has to fork over the money for it, don't get me wrong I like the man and everything but sometimes I just wish that there was more he would do for me then besides telling me to do this and try this, which I have tried everything the man has told me to do, and really have seen no change in how I feel.

It totally amazes me how the doctors can sit and tell you that everything is fine and you are healthy when most days you struggle just to get out of bed, but sure I'm just as healthy as a horse!!! NOT!!

I know my body and its telling me every day something is just not right, so tomorrow I go for my labs to get tested for lymes disease, i'm keeping my fingers crossed that it comes back negative but yet in the back of my mind a positive would answer so many unanswered questions.

I will let you know as soon as I know something.

Thanks and have a great weekend.

Bren

  • 1 year later...
jalsirt Newbie
jalsirt
Posted

Did you ever find a group? I am willing/hoping to start a group in the Geneva, St. Charles area. I have a public space to offer but am looking for people to help me get things started.

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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

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    • knitty kitty
      Seeking advice on potential gluten challenge

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    • trents
      Have I got coeliac disease

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      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      Have I got coeliac disease

      By trents · Posted

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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
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