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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're welcome! Yes, I too, hate waiting for lab results. Ugh!
    • I understand this is not a doctor's office and that I need proper testing done to rule out Celiac disease, however, I am stuck waiting until November to even see a GI doctor. So I need some suggestions soon on which test to go for first and what to do as I wait. Also do note, I am 28 years old.

      Right now, the most suspecting culprits to my symptoms have been Gallbadder, Celiac disease, and IBS. I have also been recently diagnosed with pre-diabetes and I am obese.  My Ultrasound and CT scan have all come up as normal and no signs of gallstones. However, I was in extreme pain as my upper abdomen was examined during the ultra sound. My white blood cell count also seems to be high at 12,000 but all blood work came back normal for liver and everything else.

      Symptoms included are: diarrhea
      yellow-stools (Sometimes foul smelling but always sink)
      light gnawing pain in area a few inches above belly button
      burning in chest
      sometimes pain below upper right rib cage.
      Tenderness all around the upper abdomen, but more so on the right and center.
      burping frequently after meals
      Gassy
      bloating in abdomen The pains used to come and go for the past few years as something very mild, but then the yellow stools happen at least four months ago and at a constant rate. Everyday it is either yellow or orange.  Sometimes the stools are lose and other times they are not. Two months in, I was finally diagnosed with pre-diabetes and have been having a strict low calorie and non fatty diet.

      So far the upper right pain has subsided but the pain above my belly button would continue. The gassy and bloated feeling would come and go as well. I get severe heart burn after almost every meal. But I felt it especially after eating whole wheat sandwiches or whole wheat pasta. I however don't feel it when I eat a Nature Valley granola bar, or pack of peanut butter crackers. I also had a chicken and vegetable stir fry with soy sauce cooked in that also had little effect on me. A bowl of cereal also made the heart burn act up pretty bad. I sometimes feel numb or light headed after various meals. Especially larger ones. In fact, it seems the more I eat, the worse I feel. But the less in the stomach, the more the pain above my belly button starts to act up.

      It is usually in the morning and afternoon I feel the most with gas and bloating. Especially after any large meals from the previous day. Despite the diet and work outs I have had, nothing has changed the stools. However, taking fish oil pills has greatly reduced the pain in my upper abdomen as well as the pain  in the the area above my belly button. My question now is, is there a very likely chance of this being celiac disease? Should I go on a gluten free diet to test since I Have to wait so long? Also, which test should I ask the doctor for first, as it will take a GREAT deal of time to pay off each one. Colonoscopy, HIDA scan, or endoscopy. 

      Again, I understand this isn't a site to get compete medical advice or to know exactly what my illness is, but I am trying to narrow down the possibility or what is most likely. If this has a chance of being celiac disease, I would rather know sooner than later.
    • Thank you very much for all the info Squirmingitch. The doctor told me as we were talking he was going to order some tests with urine so I don't know why he didn't mark that. Maybe he forgot as we were talking? Duly noted about the bladder Cancer to watch out for too. Doctor said it will take about a week to get the lab results back usually from this lab. The wait will seem like forever I'm sure. Yes I will press to have the other tests done too if this one comes back negative.
    • http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
    • Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
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