Trying to navigate between Celiac, Gluten Intolerance and Food Allergy

[exshuffleskater]

Hi, this is my first post.  I became suspicious of Celiac or something related when I gave up gluten about two months ago and my health dramatically improved.   The trick seems to be to get it diagnosed.  I had a test for tTG (1 at <4), and IgA (124, normal, low side of normal).  Nothing else was tested so far.  The nurse called me and said "good news, you don't have Celiac."  Since I've been reading up and since she's a royal PITA busybody I ignored her.   I'm seeing the doc later next week.

I'm trying to figure out how to successfully navigate a clear answer of whether I have Celiac, or GI, or Allergy to gluten.  I suspect I'll need to see specialists.  Will I need to see an Allergist for the allergy side?  This illness seems so hard to diagnose, but the gluten-free diet has made such a huge difference in my life.  The results can't be for no reason.  In fact, I had some badly made pasta today and I know I've been glutened.  I already can tell the exact feeling I get.  And the sweat gives it away every time. 

I read the wonderful FAQ about the tests here (thanks so much for that!).  I need to know what specialists to ask for and seek out.  I live in Raleigh/Durahm NC area and it's really hit or miss with MDs around here.  I'm thinking to go up to Pennsylvania for the Holtorf alternative health place.  More expensive, but I want my life back.  Do I need to get that extreme?  Seems like if it's an illness I should be able to get a diag and get on the program and done.  Or am I dreaming?

I have stories of terrible, even deadly gut issues in my family, but no actual family history that includes diagnoses.  More like "sally had such problems she stopped eating and died."  That's not really the sort of thing that helps.  If my mom were celiac and took me as a child, then yeah it would've been easy.  This way, it's tough.

[cyclinglady]

2 hours ago, exshuffleskater said:

Hi, this is my first post.  I became suspicious of Celiac or something related when I gave up gluten about two months ago and my health dramatically improved.   The trick seems to be to get it diagnosed.  I had a test for tTG (1 at <4), and IgA (124, normal, low side of normal).  Nothing else was tested so far.  The nurse called me and said "good news, you don't have Celiac."  Since I've been reading up and since she's a royal PITA busybody I ignored her.   I'm seeing the doc later next week.

I'm trying to figure out how to successfully navigate a clear answer of whether I have Celiac, or GI, or Allergy to gluten.  I suspect I'll need to see specialists.  Will I need to see an Allergist for the allergy side?  This illness seems so hard to diagnose, but the gluten-free diet has made such a huge difference in my life.  The results can't be for no reason.  In fact, I had some badly made pasta today and I know I've been glutened.  I already can tell the exact feeling I get.  And the sweat gives it away every time. 

I read the wonderful FAQ about the tests here (thanks so much for that!).  I need to know what specialists to ask for and seek out.  I live in Raleigh/Durahm NC area and it's really hit or miss with MDs around here.  I'm thinking to go up to Pennsylvania for the Holtorf alternative health place.  More expensive, but I want my life back.  Do I need to get that extreme?  Seems like if it's an illness I should be able to get a diag and get on the program and done.  Or am I dreaming?

I have stories of terrible, even deadly gut issues in my family, but no actual family history that includes diagnoses.  More like "sally had such problems she stopped eating and died."  That's not really the sort of thing that helps.  If my mom were celiac and took me as a child, then yeah it would've been easy.  This way, it's tough.

Welcome! 

Unfortunately, you have to be on a gluten diet in order for any of the celiac tests to work.  You would have to do a challenge of consuming gluten for 8 to 12 weeks prior to a blood draw or 2 to 4 weeks prior to an endoscopy.  If celiac disease is ruled out, then you might have GI (gluten sensitivity is the new terminology).    You did not say why you think you might have a wheat allergy (breathing issues, swelling, hives, etc.) which is different type of hypersensitivity and is not autoimmune like Celiac Disease.  

Only you can decide if a diagnosis is worth pursuing.  

[Ennis-TX]

Even if you test negative for Celiac, and followed through got tested properly as mentioned above, NCGS (Non Celiac Gluten Sensitivity) is a real thing. We have many members who have it with obvious reactions sometimes even worse then a normal celiac ranging from neurological, inflammatory and gut issues. I am sure one of our regulars with this issue will come and give you a debriefing of it in a bit to give you a better perspective.

[exshuffleskater]

Thank you both!  After the first test I did even more reading and found many stories of people who didn't get it diagnosed for years, with roughly one test per year, and different types of tests. 

I did the gluten-free diet trial after 23andme told me I had one of the two genes.  They were vague though, and I don't know which one it is.  Even self decode hasn't helped me find out which is the one.  Lately I've found another gene that indicates if you are likely to get liver issues.  I have liver issues, high enzyme values which have dropped now. I'm really bad at converting from some r-number to an H-coded gene.  I'm not a biochemist and my brain numbs when I try to read the explanations. I'll blame that on brain fog, heh, yeah, that's it! 

I think I've been celiac since I was weaned.  I was a very sick child and nearly died a few times growing up.  I was also starvation level malnourished as a child.  It could've been partly because of the celiac.  Gut issues since I was born basically. So this year I find out my thyroid is wonky, my liver is freaking out...  what else can go wrong, right?  I'm scared to go back on gluten for two weeks but if I must I must.  I wasn't eating gluten when I took that test I mentioned previously. I was hoping to strike it lucky to find an IgG that hung around long enough, but the doc gave the wrong test (it seems so easy to pick the wrong tests even, so I don't blame him). 

What I need to know is, which specialist do I go to?  Gastroenterologist?  Allergist?  Do I have a better hope of proper, faster, diagnosis with a naturopath or functional MD?  And if some of you are near me, I'd love a local recommendation.  Thanks so much for the replies and encouragement!

 

 

[cyclinglady]

7 minutes ago, exshuffleskater said:

Thank you both!  After the first test I did even more reading and found many stories of people who didn't get it diagnosed for years, with roughly one test per year, and different types of tests. 

I did the gluten-free diet trial after 23andme told me I had one of the two genes.  They were vague though, and I don't know which one it is.  Even self decode hasn't helped me find out which is the one.  Lately I've found another gene that indicates if you are likely to get liver issues.  I have liver issues, high enzyme values which have dropped now. I'm really bad at converting from some r-number to an H-coded gene.  I'm not a biochemist and my brain numbs when I try to read the explanations. I'll blame that on brain fog, heh, yeah, that's it! 

I think I've been celiac since I was weaned.  I was a very sick child and nearly died a few times growing up.  I was also starvation level malnourished as a child.  It could've been partly because of the celiac.  Gut issues since I was born basically. So this year I find out my thyroid is wonky, my liver is freaking out...  what else can go wrong, right?  I'm scared to go back on gluten for two weeks but if I must I must.  I wasn't eating gluten when I took that test I mentioned previously. I was hoping to strike it lucky to find an IgG that hung around long enough, but the doc gave the wrong test (it seems so easy to pick the wrong tests even, so I don't blame him). 

What I need to know is, which specialist do I go to?  Gastroenterologist?  Allergist?  Do I have a better hope of proper, faster, diagnosis with a naturopath or functional MD?  And if some of you are near me, I'd love a local recommendation.  Thanks so much for the replies and encouragement!

 

 

Here are the tests:

Open Original Shared Link

There are not that many blood tests (three) to order and obviously your doctor seems to be clueless.  There is no excuse as Dr. Google is available to him.  You should see a gastroenterologist (GI) and your best shot is going back on gluten for two weeks and hope that the GI orders an endoscopy.  But you will never know until you see a GI.  

It can be dangerous to self-diagnose when you do not do the proper research.  The gene test just tells you that you and some 35% of the population have  the genes that could turn into celiac disease.  Only a tiny few actually do have celiac disease out of that gene pool.  You could have Crohn’s, SIBO or A FODMAPs issue (even that would make you feel better if you eliminated wheat from your diet), or any other GI issue.  

Get to the library and start reading.  Go through the University of Chicago’s celiac website (well written) and the celiac non-profit organizations to learn about celiac disease.  I think you will be better equipped to make informed decisions.  See a GI.  

Take care.  

[exshuffleskater]

16 minutes ago, cyclinglady said:

Here are the tests:

Open Original Shared Link

There are not that many blood tests (three) to order and obviously your doctor seems to be clueless.  There is no excuse as Dr. Google is available to him.  You should see a gastroenterologist (GI) and your best shot is going back on gluten for two weeks and hope that the GI orders an endoscopy.  But you will never know until you see a GI.  

It can be dangerous to self-diagnose when you do not do the proper research.  The gene test just tells you that you and some 35% of the population have  the genes that could turn into celiac disease.  Only a tiny few actually do have celiac disease out of that gene pool.  You could have Crohn’s, SIBO or A FODMAPs issue (even that would make you feel better if you eliminated wheat from your diet), or any other GI issue.  

Get to the library and start reading.  Go through the University of Chicago’s celiac website (well written) and the celiac non-profit organizations to learn about celiac disease.  I think you will be better equipped to make informed decisions.  See a GI.  

Take care.  

UChicago is a wonderful site, thanks so much!!  I didn't even know it was there, I mean that they focused on it. 

I think it's very possible I have SIBO, but I'm doubtful about Crohn's, and FODMAPS improved a lot after a 2 and a half year Keto diet.  (I don't do that anymore, but it was helpful for a while.)  Actually my tolerance for FODMAPS has been so good I'm tempted to try apples again.  I really miss having apples in my salad. Sigh, I've been riding this pony for so long. 

Thanks again for the help