Next steps?

[Felicitouschick]

This jazz is so befuddling! So, my doctor did several tests. She says I have both genes for Celiac. But my IgA is <1.2. My Ferritin is low (an 8). My other numbers are okay...though I am on good supplements for Vit D and B12, b/c of prior low tests for them. She says my options at this point are to go to a GI, or go gluten free. I have many gastro problems, and immune challenges. I'm not really sure how to proceed...thoughts?

[Ennis-TX]

Get properly tested, did you get the full celiac panel? Next up is the GI and scope. Read up more here. Open Original Shared Link

[cyclinglady]

1 hour ago, Felicitouschick said:

This jazz is so befuddling! So, my doctor did several tests. She says I have both genes for Celiac. But my IgA is <1.2. My Ferritin is low (an 8). My other numbers are okay...though I am on good supplements for Vit D and B12, b/c of prior low tests for them. She says my options at this point are to go to a GI, or go gluten free. I have many gastro problems, and immune challenges. I'm not really sure how to proceed...thoughts?

Is that an IgA TTG, IgA DGP or Immunoglobulin A (IgA)?  The gene test just tells you that you could develop celiac disease but keep in mind that almost 40% of the population carries the genes.  

Consider going to a GI who is probably more knowledgeable about celiac disease that your PCP.  Keep eating gluten until all testing is done.  

[Felicitouschick]

See next comment.

[Felicitouschick]

It was the TTG IgA. And she sent out to Mayo Clinic for a Celiac Cascade, so, I'm not sure what all that tests. I saw the TTG IgA on my chart online, but she emailed me about the genes. She is a good PCP, but it may be good to find a GI more knowledgeable. I live rurally, and healthcare is kind of a crapshoot. The only specialist on the celiac.org finder with in 100 miles is a pediatric GI. Any suggestions on picking a good one? Or are most GIs pretty competent at this?

 

31 minutes ago, Ennis_TX said:

Get properly tested, did you get the full celiac panel? Next up is the GI and scope. Read up more here. Open Original Shared Link

 

16 minutes ago, cyclinglady said:

Is that an IgA TTG, IgA DGP or Immunoglobulin A (IgA)?  The gene test just tells you that you could develop celiac disease but keep in mind that almost 40% of the population carries the genes.  

Consider going to a GI who is probably more knowledgeable about celiac disease that your PCP.  Keep eating gluten until all testing is done.  

 

[GFinDC]

2 hours ago, Felicitouschick said:

It was the TTG IgA. And she sent out to Mayo Clinic for a Celiac Cascade, so, I'm not sure what all that tests. I saw the TTG IgA on my chart online, but she emailed me about the genes. She is a good PCP, but it may be good to find a GI more knowledgeable. I live rurally, and healthcare is kind of a crapshoot. The only specialist on the celiac.org finder with in 100 miles is a pediatric GI. Any suggestions on picking a good one? Or are most GIs pretty competent at this?

 

 

 

The doctor I went to for my initial celiac testing was in the pediatric section of the hospital.  His name is Alessio Fasano.  I think that it was common in the past to put celiac doctors in the pediatric section.

Finding a good celiac savvy GI can be tricky. Try a google search for celiac support groups in your area.  If you find a support group they may be able to recommend a GI.  Maybe search Facebook for celiac in your area too.

[cyclinglady]

I think the cascade starts with the TTG.  If positive or barely positive, the lab will run the additional celiac tests.  The problem is that some people, like me, never test positive on the the TTG IgA.  If my GI had not run a complete celiac panel, my diagnosis would have been missed.  If you strongly suspect celiac disease, consider asking for the additional tests.  Note, too that some celiacs are seronegative.  

My ferritin was low (2).  For years, it was blamed on “heavy periods”.  I also have a genetic anemia that masked my iron-deficiency anemia.  Iron supplements would help, but off them my ferrtin would drop.  I saw a GI because I was over 50 and needed a colonoscopy.  One look at my chart and my GI ordered the celiac panel.  I was scoped from both ends and they found moderate to severe damage and my blood test was positive on only the DGP IgA.  Even in follow-up testing, I have never had a positive on a TTG or EMA test.  

Can you go gluten free?  You bet.  My hubby did just that 17 years ago per the advice of his GP/PCP.  It worked.  However, he would be the first to tell you that I have had way more support from family, friends and yes, medical.   

This all sounds confusing, I know.  Take the time to research and that will help you decide what is best for you.  

[cyclinglady]

1 hour ago, GFinDC said:

The doctor I went to for my initial celiac testing was in the pediatric section of the hospital.  His name is Alessio Fasano.  I think that it was common in the past to put celiac doctors in the pediatric section.

Finding a good celiac savvy GI can be tricky. Try a google search for celiac support groups in your area.  If you find a support group they may be able to recommend a GI.  Maybe search Facebook for celiac in your area too.

I never knew that!  Dr. Fasano?  He is one the the best!  

[Felicitouschick]

9 hours ago, GFinDC said:

The doctor I went to for my initial celiac testing was in the pediatric section of the hospital.  His name is Alessio Fasano.  I think that it was common in the past to put celiac doctors in the pediatric section.

Finding a good celiac savvy GI can be tricky. Try a google search for celiac support groups in your area.  If you find a support group they may be able to recommend a GI.  Maybe search Facebook for celiac in your area too.

Wow, such good and practical advice. Thank you! I'll call the ped GI, and look for local support groups. An action plan is so helpful!