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My Dr Asking What Tests To Order To Screen For celiac disease! Need Info!


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#1 shayre

 
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Posted 16 March 2014 - 03:59 PM

HI.  My infertility specialist that we used a while back...is asking for the proper tests to order for screening his patients for celiac disease!  He listened!  I am not knowledgeable on what specific tests he needs to order.  Does anyone knowledgeable know what I can tell him?  After hearing my story since my 2 IVF procedures with him...and now my body is closer to normal...he wants to learn more.  NEED INFORMATION AND ADVICE TO GIVE HIM!!!  Especially if it's related to infertility, hormones and PCOS.  I need an arsenal of articles from reputable sources for him to learn all that he can.  My email is s.rivotto@comcast.net if anyone needs to email me articles.  I am not sure that screening will take care of everyone, but it's bound to hit on a few people here and there.  I wish that there was more that I could tell him about all of us that are symptomatic with NO positive results!  Thanks a million.  Is anyone else shocked that a doctor listened and wants to add it to his practice...WOW! 


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#2 cmc811

 
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Posted 16 March 2014 - 04:27 PM

I'm still too new at this to have a ton of input but just wanted to congratulate you on getting through to him and benefiting his future patients. That's awesome!


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Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. TSH 2.91 at 22 months and now at 5.75 yrs is 4.7 but still being called normal.

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).


#3 GottaSki

 
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Posted 16 March 2014 - 04:43 PM

Total Serum IgA

Tissue Transglutaminase IgA -- (commonly called tTG-IgA)

Tissue Transglutaminase IgG (tTG-IgG)

Endomysial IgA (EMA-IgA)

Demiadated Gliadin Peptide - IgA (DGP-IgA)

Demiadated Gliadin Peptide - IgG (DGP-IgG)

 

older Gliadin Tests:

Anti-Gliadin Antibody IgA (AGA-IgA)

Anti-Gliadin Antibody IgG (AGA-IgG)

 

Nutrient testing is also important as Celiac Disease prevents proper absorption of many nutrients.  My Celiac Doctor runs the following during the diagnostic process and at annual checks:

 

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper Zinc

Complete Metabolic Panel - shows various other nutrients

 

Complete Blood Count - can reveal other associated issues like elevated liver enzymes and more.

 

Most doctors do not run all of the above -- but should.

 

If I had my way...everyone with fertility, gastro, autoimmune issues along with anything labeled mental/behavioral would get a full screening....we can dream...one doctor at a time ;)

 

Good work getting one to listen and learn - it is not easy - but the best doctors are open to expanding their knowledge...even when the information comes from their patients!  Each of my doctors is used to receiving updated research in their inbox and at my appointments.  

 

Spread the word -- unfortunately it is up to us to advocate when opportunities are presented.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 shayre

 
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Posted 16 March 2014 - 07:22 PM

That's awesome, thank you!  I have started to collect data for many of my doctors, but the infertility specialist is the first that I have approached.  He is a very good doctor:)  My new neurologist is more informed about gluten, because he has the same issues.  He says that we are beyond medical borders at the moment.  I am going to forward info to my old neurologist and family physician.  I could still use ANY and ALL articles that any of you can find!!!  You know that doctors like to see studies and hard facts from credible sources!  Keeping them informed of research is a great idea!  I just need to know how I stay informed of the latest research?


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#5 GottaSki

 
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Posted 16 March 2014 - 07:28 PM

You can look in the publication section of this forum for some good links or search pubmed for particular items of interest to you.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 shayre

 
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Posted 17 March 2014 - 06:52 AM

Lisa...do you know anything about which labs are best to run tests?  I read an article about the MD who owns Enterolab, and he has celiac disease.  Other than that...I think that which labs do a better job...makes a difference.  Right?


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#7 GottaSki

 
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Posted 17 March 2014 - 07:45 AM

I have never researched particular labs.  Please let me know if your research finds documented issues.  Thanks :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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