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Sorry if this is old news to any of you- but it's new to me, so I decided to share.  This is my new favorite website about Celiac Disease.  Lots of information in a concise and easy to read format from real, live, medical professionals.  Must be nice to be a celiac in chicago with this resource!

 

http://www.cureceliacdisease.org/faqs

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Ohhh I like it!! It has alot of info in there!! Thanks!! Altho I don't live in Chicago. But it is nice to have some nice sites to send people to when they want to know about Celiac disease. I try and explain but sometimes they still do not get it. 

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yes lots  of info.... But  I think this  site  is  very  helpful getting  info  from others  who  walk the  walk!!!!

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Thanks! As someone newly diagnosed, I'm always happy to have more resources.

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yes lots  of info.... But  I think this  site  is  very  helpful getting  info  from others  who  walk the  walk!!!!

Agreed, Mamaw!   People in this forum are great and so very helpful.  This site is also wonderful for many other reasons.  I also don't feel alone here ...or crazy.  I know I can post about my frustrations and people will understand.  I know I can post some bizarre thing that my body is doing and someone out there has already been-there-done-that. Invaluable feedback.

 

However, if you want to know medical facts, I would suggest going to my new fav website (as opposed to my longtime fav website): What's the medical difference between gluten intolerance and celiac, how to conduct a gluten challenge (how much and for how long), what are the genetic odds that immediate family members also have celiac, etc.  The info is provided by experts in the field and is up to date.  Just the facts ma'am.

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anti-soprano because of your post I visited the Chicago site even though I use it often, and just for fun searched "DGP"  They now have this posted:

 

http://www.cureceliacdisease.org/archives/faq/are-raised-dgp-igg-levels-an-early-sign-of-celiac-disease

 

I got a positive DGP-IgG score but nothing else, and although they kind of dance around the question, it relates the test to celiac instead of gluten intolerance.  I plan on sending this link to family members.

 

Thank you!

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anti-soprano because of your post I visited the Chicago site even though I use it often, and just for fun searched "DGP"  They now have this posted:

 

http://www.cureceliacdisease.org/archives/faq/are-raised-dgp-igg-levels-an-early-sign-of-celiac-disease

 

I got a positive DGP-IgG score but nothing else, and although they kind of dance around the question, it relates the test to celiac instead of gluten intolerance.  I plan on sending this link to family members.

 

Thank you!

Woo-Hoo!  Go science!!

So glad I posted this :D  

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Sorry if this is old news to any of you- but it's new to me, so I decided to share.  This is my new favorite website about Celiac Disease.  Lots of information in a concise and easy to read format from real, live, medical professionals.  Must be nice to be a celiac in chicago with this resource!

 

http://www.cureceliacdisease.org/faqs

I agree, and I think the Univ. of Chicago website is most informative site as well. Here is one I find a close second:

http://www.thepatientceliac.com/

It is authored by a women who has Celiac and happens to be an MD ,some of her children were diagnosed as well.

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I like thepatientceliac also .. but it was having a very slow time coming up!! I might look at it again when the web is not guite so busy!! 

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KarenG, "GottaSki" Lisa and I are always posting links to the U of C website. :)

We also agree...it has the most comprehensive information in one spot.

 

I also like Tricia Thompson and Shelley Case's sites for nutritional information

and the book Real Life With Celiac Disease by Melinda Dennis

and Daniel Leffler.

Excellent Resource--covering dozens of topics written by over 50 celiac specialists.

 

And "the patient celiac" is extremely informative. Jess knows her stuff. And she graciously shares

her knowledge on various celiac-related sites as well as her own. 

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Yes they are all great Irish Heart , but yet I hang in here :) This is a very nice site!! I do refer to this site if and when people have questions, either they don't understand and I cannot explain , Or don't have time to explain, I just hand them a sheet of paper with the website on it. I just really like to see it from all sides from different people and such , different perspectives , different stories. But having a  site like this where you can talk and get more and more information from, trials , and tribulations. Is wonderful!! Makes me feel I am not alone in this world! And seems so much stuff comes together for me when I read some of the stuff some have to say. I visit other sites , read them , think wow that was a good site!! Then I come in here :) 

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We do kinda grow on ya, don't we? (like mold)

And we are wicked smart. (ahem, and humble)

:D

seriously, though.....I have always found the advice from real live celiac veterans to be the best resource there is,

next to the celiac specialists.

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Yes they are all great Irish Heart , but yet I hang in here :) This is a very nice site!! I do refer to this site if and when people have questions, either they don't understand and I cannot explain , Or don't have time to explain, I just hand them a sheet of paper with the website on it. I just really like to see it from all sides from different people and such , different perspectives , different stories. But having a  site like this where you can talk and get more and more information from, trials , and tribulations. Is wonderful!! Makes me feel I am not alone in this world! And seems so much stuff comes together for me when I read some of the stuff some have to say. I visit other sites , read them , think wow that was a good site!! Then I come in here :)

Absolutely!! 

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All of the websites that have been mentioned in this thread have been super helpful for me and my family while I am learning about my recent diagnosis. Thanks so much! I have a background in science so it's lovely to read all the scientific statistic based research as well as personal experiences.

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It is a great site.  They need a link to this forum, though!  The people on here are amazing.

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    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
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    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. 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Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. 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    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
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