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Celiac Disease Center In Chicago

MoMof2Boyz

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MoMof2Boyz Enthusiast
MoMof2Boyz
Posted

If someone knows the toll free hotline number can you please post it? I found a number on their website but I don't think that's it. thanks!

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kareng Grand Master
kareng
Posted

Open Original Shared Link

The University of Chicago Celiac Disease Center

5841 S. Maryland Avenue, MC 4069

Chicago, Illinois 60637

Celiac Disease Hotline (Monday-Friday): 773-702-7593

Fax: 773-702-0666

Email: info@celiacdisease.net

MoMof2Boyz Enthusiast
MoMof2Boyz
Posted
  • Author

Open Original Shared Link

The University of Chicago Celiac Disease Center

5841 S. Maryland Avenue, MC 4069

Chicago, Illinois 60637

Celiac Disease Hotline (Monday-Friday): 773-702-7593

Fax: 773-702-0666

Email:

kareng Grand Master
kareng
Posted

I used the email. I emailed the actual copies of my kids labs ( they want the actual copies in case you re- type them wrong). I got a response within a day or two. However, the doctor that reads them was visiting his family in Italy so it was a few weeks until he got back. But they told me that.

MoMof2Boyz Enthusiast
MoMof2Boyz
Posted
  • Author

I used the email. I emailed the actual copies of my kids labs ( they want the actual copies in case you re- type them wrong). I got a response within a day or two. However, the doctor that reads them was visiting his family in Italy so it was a few weeks until he got back. But they told me that.

ok, thanks, email will be the best way for me to communicate since my kids will be home from school tomorrow and it's hard to talk on the phone when they are home~ so one last question....do the docs read and go over the test results for free or is there a charge? and are they very helpful?

kareng Grand Master
kareng
Posted

ok, thanks, email will be the best way for me to communicate since my kids will be home from school tomorrow and it's hard to talk on the phone when they are home~ so one last question....do the docs read and go over the test results for free or is there a charge? and are they very helpful?

Give them a brief list of symptoms & your experience with your docs. The key word is brief! I got a very brief response, sort of a yes or no answer. But my answer was no Celiac so maybe they would give more if its a yes. There is no charge but they did ask me for a donation, which I did. Its not neccsary, however. With my diagnosis of Celiac, we have changed where we donate our money so we switched to them for some of our charity money.

Edit: that sounds like we are some kind of rich people. We just give a little to different places that mean something to us.

The Horticulturalist Apprentice
The Horticulturalist
Posted

If someone knows the toll free hotline number can you please post it? I found a number on their website but I don't think that's it. thanks!

I called them, they returned my call in about 2 - 3 days. Most of the time it's an answering machine, but they do call back. I then emailed with the lady I talked to, she was very nice. The Dr did review the labs for me at the time.

I found them very helpful, can't say enough good things about them. :)

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    • heart390
      Why now?

      By heart390 · Posted

      THANKS again!!!
    • trents
      Why now?

      By trents · Posted

      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
    • heart390
      Why now?

      By heart390 · Posted

      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago.  The gluten will be my 4th autoimmune disease.  Thanks so much for all your input!!!
    • trents
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      @ainsleydale1700, the additional test information you provided is very significant! Here is the important part: "This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG." It looks to me that you may be a "seronegative" celiac. The frontline diagnostic tests for celiac disease are IGA tests, especially the tTG-IGA. However, another IGA test ("total IGA") was done to check you for IGA deficiency and you were found to be deficient. That means that the usual IGA tests done to diagnose celiac disease, such as the tTG-IGA, would not be reliable. That is why the IGG testing was done "reflexively" (which means in response to the results of a previous test, i.e., the total IGA test.). The IGG tests are not quite as reliable as the IGA tests for diagnosing celiac disease, meaning, there are more "other" possible causes for elevated IGG test scores. The IGG test did give a borderline positive result, however, so the physician ordered the endoscopy with biopsy to check for damage to the small bowel lining that would be caused by untreated (continuing to consume gluten) celiac disease. The biopsy showed no damage so the doc concluded you do not have celiac disease. However, the monkey wrench in the gears of the doc's conclusion is that he gave you permission to proceed with the gluten free diet which would have allowed for healing of the small bowel lining to commence. How long were you gluten free before the biopsy was taken? And how much damage to the small bowel lining was there to begin with? If the damage was minimal, it might have been fully healed by the time the biopsy was done. And the symptoms you describe involving vitamin and mineral deficiencies, tooth enamel loss, cessation of menses, neuropathy, constipation alternating with diarrhea . . . IMO all scream of celiac disease as opposed to NCGS.
    • trents
      Why now?

      By trents · Posted

      Yes, other health challenges and even severe prolonged emotional distress are thought to be potential triggers for the latent celiac genes. Let me encourage you to get tested for celiac disease as soon as possible so that you can get on with eliminating gluten from your diet, which itself will involve a considerable learning curve in order to become consistent at it. Even pills and meds can contain gluten because wheat starch can be used as a filler. It's important to know if you have celiac disease for two reasons. First, it damages the lining of the small bowel and, over time, wears down those billions of little fingers that make up the lining and produce a huge surface area for absorbing nutrients from the food we eat. The small bowel is essentially the place where all of our nutrition is absorbed. Long term undiagnosed/ignored celiac disease therefore results in nutritional deficiencies even when we are eating well. You don't need that with the other health issues you are dealing with.  Second, many or most people find it difficult to be consistent with the gluten free diet if they don't have a formal diagnosis of celiac disease. It is just too inconvenient and limiting and they begin to rationalize that, "Well, maybe my problems are due to something else." Human nature has a remarkable capacity to rationalize. It can be argued that you can cheat a little bit on the gluten free diet with NCGS because it only creates a little discomfort and distress but not damage. That doesn't work with celiac disease. So, I feel it is important to know which you are dealing with, especially in the case where you have not yet begun the gluten free diet and you are a good candidate for beginning testing. Many people make the mistake of experimenting with the gluten free diet before they get tested for celiac disease and then they have to go back on gluten for weeks or months, the so-called "gluten challenge", in order to achieve valid test results. By the way, autoimmune diseases tend to cluster. When you get one, it is very common to develop others in time. 
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