Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here And Axious

jfem4

Recommended Posts

rez Apprentice
rez
Posted
Rez,

Thank you for your amazing post... I have been so blessed here with an amazing amount of info and support.

The MD's didn't do the endoscopy b/c they were looking for Celiac...they thought it was reflux, but when the path came back-it pointed toward the blunting of the villi and the deepening crypts in the duodenum. They are puzzled at why no lymphocytes were present.

He said if he had all 3 , the pathologist would have diagnosed him w/Celiac..so now we are getting the blood test.

What is a full panel of blood tests? THe MD is calling me back today because I want to have them add a CBC to chekc if he is anemic, and just to check to make sure everything else is ok.

What is ttg? So having what he says are 2 out of 3 "markers" doesn't automatically make my son have Celiac? But he does have a gluten-sensitivity or intolerance, right?

What is a positive EMA? Blood test? How do I make sure I am getting that one done?

WHo si your MD in Chicago? We know a great MD there,too, not a GI though.

When will you have the biopsy results?

What is EE?

I'm sorry for all the questions, but I'm just learning all the terms... : )

MD # 6??? WOw that is a nightmare, but it seems as though you have found a great one, finally!!!

I completely understand about the Chron's...

Please keep us informed about the results,

Good Luck and many,many Thanks!!!

Jane

The doctor's office is supposed to be calling this afternoon. There's a big knot in my stomach as I type. :) I'll try to answer your questions as best I can. The big bummer thing about Celiac is it seems there is such a gray area.

The total blood panel is:

AGA Igg

AGA IgA

Total IgA serum

tTG

EMA

The two most specific to Celiac are the tTG and the EMA. You need the total IgA to make sure you are not IgA deficient. The two AGA tests are not used by many physicians anymore due to their lack of specificity. The EMA and tTG show anti-self antibodies (auto-immune indicators) and the other two are anti-gluten antibody indicators.

The way they diagnose Celiac is based on blood and biopsy results. Some cases seems very clear cut, but I think when it is caught early or the damage is patchy, it's harder to diagnose. I really recommend DR. Green's book. I think it will answer a lot of your questions.

Our doctor is Dr. Guandalini at the University of Chicago. He's wonderful. He came from Italy in the 90's and noticed that Celiac in the US was grossly underdiagnosed. He started The University of Chicago Celiac Research Center. I would highly recommend going to the top of the food chain if you have any questions. Don't mess around. We have been doctoring with my son for 13 months!! I can't believe the year has been eaten away by this. It's obsessed me and been my entire focus. Celiac is his specialty and he wrote the guidelines for diagnosing Celiac to be used by the GI's all around the world. It will take a month or two to get in, so I would call ASAP if you're interested.

I will let you know what, and if, we hear any news.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jfem4 Newbie
jfem4
Posted
  • Author

Thanks for all the info...

Any news yet??

The waiting must be so hard....

here's hoping you get good news and good news quicky!!!

J

The doctor's office is supposed to be calling this afternoon. There's a big knot in my stomach as I type. :) I'll try to answer your questions as best I can. The big bummer thing about Celiac is it seems there is such a gray area.

The total blood panel is:

AGA Igg

AGA IgA

Total IgA serum

tTG

EMA

The two most specific to Celiac are the tTG and the EMA. You need the total IgA to make sure you are not IgA deficient. The two AGA tests are not used by many physicians anymore due to their lack of specificity. The EMA and tTG show anti-self antibodies (auto-immune indicators) and the other two are anti-gluten antibody indicators.

The way they diagnose Celiac is based on blood and biopsy results. Some cases seems very clear cut, but I think when it is caught early or the damage is patchy, it's harder to diagnose. I really recommend DR. Green's book. I think it will answer a lot of your questions.

Our doctor is Dr. Guandalini at the University of Chicago. He's wonderful. He came from Italy in the 90's and noticed that Celiac in the US was grossly underdiagnosed. He started The University of Chicago Celiac Research Center. I would highly recommend going to the top of the food chain if you have any questions. Don't mess around. We have been doctoring with my son for 13 months!! I can't believe the year has been eaten away by this. It's obsessed me and been my entire focus. Celiac is his specialty and he wrote the guidelines for diagnosing Celiac to be used by the GI's all around the world. It will take a month or two to get in, so I would call ASAP if you're interested.

I will let you know what, and if, we hear any news.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,539
    • Most Online (within 30 mins)
      7,748
    Josiemc
    Newest Member
    Josiemc
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Unusual bright yellow but odourless discharge

      By trents · Posted

      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
    • ElisaAllergiesgluten
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By ElisaAllergiesgluten · Posted

      Hello good afternoon, I was wondering if anyone has ever brought their anti-allergy pills? I have been wanting to use their Cetirizine HCI 10mg. They are called HealthA2Z and distributed by Allegiant Health.I’m also Asthmatic and these allergies are terrible for me but I also want to be sure they don’t have any sort of gluten compound.    I have tried calling them but to no avail. Has anyone ever used them? If so, did you had any problems or no problems at all?    thank you
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.