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New Here And Axious

jfem4

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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.

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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.

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      By cristiana · Posted

      When I have had what I think are episodes of this (I've never had a formal diagnosis for PF) it seems to be triggered by bloating caused by something I've eaten - a friend had an episode of this after eating too many apples, for me corn and rice cakes seemed to give me IBS and trigger this.  I am not a medical person but it seemed like the extra pressure down there perhaps added pressure to already sensitised pelvic and rectal muscles. Coeliacs can suffer from bloating when they are first diagnosed due to the inability to digest food properly.  Lactose for me caused a lot of bloating and when I came off it temporarily after diagnosis it helped reduce bloating.  Iron supplements and the timing of taking them also caused discomfort and I had to experiment a bit with type and timing before my gut felt comfortable.   Maybe something to think about?   Some coeliacs suffer from constipation - again, just a thought, but perhaps if you had issues with that it might be a contributor.
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      Guinness, can you drink it?

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