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How Has The Forum Helped You?


CarlaB

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StrongerToday Enthusiast

I'm so glad you started this thread. Will all the recent um... "emotional outbursts" (for lack of a better term) we need to concentrate on why we're really here.

I learned 100 times more here then I did from my own doctor, nutrionist, and wellness coach combined! From cross contaminiation, to reading EVERY label especially lotions and shampoos - which I never ever would have worried about... to the most important is that I AM NOT ALONE!!!


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CarlaB Enthusiast
I'm so glad you started this thread. Will all the recent um... "emotional outbursts" (for lack of a better term) we need to concentrate on why we're really here.

Yea, I had an ulterior motive, I wanted to distract everyone from some of the other threads! Seems like everyone wants to post, so I thought I'd redirect to a more positive thread!! ;)

Canadian Karen Community Regular

Gee, where to start:

1) I learned that a 13 yr old boy could be an amazingly articulate human being with the capacity to singlehandedly reassure me, calm me down, give me clear concise information and show a level-headedness that I didn't think existed in a 13 yr old. celiac3270, of course I am talking about you. Our wonderful celiac3270. We luv ya! Oh, and we're sooooooo proud of you too!

2) I didn't even know cross-contamination existed until I came on here.

3) I have learned that everything that I have read saying "Going gluten free almost immediately shows positive results and that as long as you go on the gluten free diet, you are guaranteed that everything will go away" IS A LOAD OF CROCK! True, it happens to many people, but there are many of us out there who have had so much damage done that we are beyond the point of no return. I have gotten comfort in the knowledge that there are more than just me that have not reached total health again due to this disease.

4) I have made the most wonderful, caring, exceptional friends on here. Friends who have offered to pay for me to get additional testing down in the States, friends who have sent me little "pick-me-ups" in the mail when I am feeling down, friends who have sent other things that have helped me tremendously, friends who I know can be counted on no matter what. This point alone is the single most important reason why I thank God every day (sorry, Steve) for steering me to this site.

5) I know that no matter what comes in the future, I have a whole family here that I can count on to help me through.

Hugs.

Karen

jayhawkmom Enthusiast

I am still very new to this group and the Celiac Lifestyle.

When my daughter's pediatrician first said the words "Celiac Testing" to me, I started doing research. We'd been dealing with months of "D" - months of stomach pains, waking in the middle of the night, not eating, vomitting...etc.

The first blood tests came back "negative" as far as the doctor who ordered them was concernerd. (NOT our wonderful pediatrician) But, thanks to the folks here, I learned that I could not take someone on the phone saying "Negative" as proof positive that she didn't have Celiac Disease. You all helped me find my backbone and to question the results.

I did just that, and learned that her results weren't NEGATIVE at ALL! But, the allergist didn't know how to read them. We took them to a GI who decided that it was important to scope her to see if there was anything else going on. That's when we found the ulcers in her duodenum. And, that's when "treatment" aside from the gluten-free diet began.

She's been gluten free since the day of her endoscopy(in June) and has gained 3 lbs and grown almost 2 inches!!! She's being treated for the ulcers, and she's a MUCH MUCH MUCH happier child. Pain is a thing of her past, unless accidentally glutened. I hate to admit, that's happened a few times due to MY inadequate detective work. But, I'm getting better!!!

I had no idea that a "normal" person would/could question a doctor's diagnosis! You guys pushed me to do just that. And, because of it... my daughter is a much healthier little person!!!!!

ANd, I greatly thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

myserenityprayer Explorer

Just when I thought I was losing my mind, this forum has helped save my sanity. Everyone here has been and continues to be so supportive, whether I cave in and get fries from McDonald's or not! Carla has given me the most useful advice and is always quick to respond to my anxiety ridden questions. I have learned alot from Ursula especially about soy products. It so comforting knowing there are so many others out there feeling the same way I do. I like reading about the success stories and how going gluten free has drastically improved the health of many on this site. If it wasn't for this forum I would still be eating soy soy and more soy. Not to mention cheese!!! I have learned about other intertolerances to keep my eyes out for and have learned of the importance of cleaning out your house for unknown traces of gluten in things like beauty products and toaster ovens. I am working on feeling comfortable offering my own advice when others post. I feel so knew at all of this and wouldn't want to give the wrong advice. But I guess thats what this forum is for. We know that there is not nearly enough info out there on celiac disease and gluten intolerances. Heck, I feel like I know more than my nutrionist or doctors, thanks to this forum and the research I been doing on my own. We all must continue to support each other and learn as much as we can on gluten issues. I have also learned that I am not the only one suffering from serious brain fog and I am still fathomed by the connections to other autoimmune diseases like the ones I have. This forum has seriously changed my life. Thank you so much to everyone!!

ravenwoodglass Mentor

Misdiagnosis and false negatives on celiac testing had left me disabled and very isolated. This forum has helped me to feel like I have a bit more of a life. That maybe my experience and recovery served some sort of purpose, if I could recover as much as I have from so much that I was handed pills for and told 'learn to live with the pain' perhaps others could also. I am most thanksful for the info on CC and on personal products. My hair would have never stopped falling out if I had continued using the stuff I was using. Although it was hard to go through my cabinets and throw out lots of money spent on stuff it was so worth it. But I think the most valuable thing I have gotten here is not feeling so alone, I still get lonely at times and wish I had freinds to talk to or do something with but then I come on here and realize that many are also in my shoes and it helps a great deal.

IrishKelly Contributor

First off, I don't sit a stage of panic anymore because i've now realized other people truly have these same issues...i'm not just crazy!!

Second, i've learned through this board about my dairy problem...which i would still have now if it wasn't for all of you out there!

Lastly, besides tons of support i've gotten alot of great recipes :D


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Turtle Enthusiast

Wow...this is one of those questions we could sit around and talk about for hours b/c the list is so long for how this forum has been so helpful to each of us. I don't even know where to start....but i'll try:

First and foremost I would have to say that there are some WONDERFUL people on this forum. It's such a pleasure to come to this forum and to be able to talk with someone else who TRULY understands celiac and all that one can go through with this disease. It is so great to come to a place where people are "johnny on the spot" to your questions, concerns or if you just need some support. Everyone is so helpful and giving. I have made some great friends thanks to this site and for that alone I will be forever grateful! Thank you to everyone who shares their knowledge, their insight, their courage, gluten-free products you've found, recipes, etc. EVERYTHING is sooooo helpful!!!

The top 10 things I can think of off the top of my head in trying to answer this question:

1. Where else can you go and talk about diarreah, gas, bloating??? :lol:

2. Where else can you go and admit to everyone and their brother that you were a moron for glutening yourself?

3. Where else can you go when you've been in your kitchen for a really long time trying to cook something and you need HELP!!!! And fast!!!???

4. Where else can you go and talk about gaining weight including all the details about fat rolls, having to buy bigger sized underwear, having to buy maternity pants b/c you're so bloated you can't fit into anything else, etc.???

5. Where else can you go and ask for help in trying to find the hidden gluten?? You know it's somewhere.

(Thank you GreenFingeredGaelic for helping me to see the hidden gluten in my wood cutting boards, DUH)

6. Where else can you go to find such awesome unending support????

7. Laughter, Laughter and more laughter!! (I think even GFP has even laughed a time or two) :P

8. Links to gluten-free products

9. Safe food lists

10. Patti for being my personal hygiene product consultant, especially with regards to our unruly hair & sharing ideas on which products are safe that can tackle our manes! Oh...and of course, Nini & the newbie packet she put together!!!

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    • trents
    • cristiana
      Hi Colin I share your frustration. My coeliac disease was diagnosed in 2013 and it took some years for my  TTG levels to settle to normal levels in  blood tests.  I had to make a few significant changes at home to make sure our house was as gluten free as possible (I share a house with gluten eaters) but time and time again I found I was glutened (or nearly glutened whilst eating out  - like regular bread being served with a gluten-free meal ).  Even eating in chains that Coeliac UK were recommending as safe for coeliacs.  So I gave up eating in restaurants for a while.  My blood tests normalised.  But here's the thing:  the lowest my TTG readings ever got to were 4.5 (10  and under being my local lab's normal levels) and now that I am eating out again more regularly, they've gone up to 10 again.  I am quite convinced this gluten is coming from exposure whilst eating out.  Small levels, that don't make me violently sick, but might give me a mild stomach upset.  My next coeliac blood review is in September and I mean to give up eating out a few months before to see if that helps my blood results get back on track. It seems to me that there are few restaurants which really 'get it' - and a lot of restaurants that don't 'get it' at all.  I've found one restaurant in Somerset and a hotel in East Sussex where they really know what they are doing.    The restaurant in Somerset hardly uses flour in any of their dishes; the hotel in East Sussex takes in trainees from the local college, so they are teaching best standards.   But it has taken a lot of searching and trial and effort on my part to find these two places.  There are certainly others in the UK, but it seems to me the only real way to find them is trial and error, or perhaps from the personal recommendation of other strict coeliacs (Incidentally, my coeliac hairdresser tells me that if a Michelin star restaurant has to have a separate food preparation so she has never been glutened in one - I can't say I've ever eaten in one!) For the rest, I think we just have to accept that gluten may be in the air in kitchens, if not on the surfaces, and there will always be some level of risk wherever one dines, unless the restaurant cooks exclusively gluten free dishes. Cristiana  
    • RMJ
      Hopefully @Cristiana will see this question, as she also lives in the UK.
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    • trents
      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
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