beachbirdie

Hi Sarah, and welcome to the forum!

You have come to the right place for information and friendly support!  Hopefully your doctor will move quickly to get you tested.

This forum is full of people who have struggled for YEARS with misdiagnoses before finally figuring out celiac was the cause of their problems.  Your short gluten-free trial has already told you a lot, you feel better when you do not eat it!

But please, as EmiPark said, keep eating gluten while you are in the midst of testing.  You won't produce antibodies if you are not eating gluten, and the antibody level can drop quickly when you stop.

Keep us posted how things go with your doc, and keep asking questions!  Be sure she tests for these things:

Total Serum IgA

Deamidated Gliadin Peptides - (2 tests... DGP IgA and DGP IgG)

Endomysial Antibodies (anti-EMA)

Tissue Transglutaminase antibodies (IgA is usual version, I'd ask for IgG too)

shadowicewolf gave you good advice.  The IgG will be accurate and would be the only way to tell you if you do have celiac, in the possibility of a negative biopsy.  You may be non-celiac gluten intolerant, that is a valid condition that would need you to be gluten free. 

You have it right about "IBS".  This forum is FULL of people who were told they had IBS, only to find later they actually had celiac (or NCGI).

The best way to get the answer; a gluten-free diet!  It does not require a prescription! 

Hi all.  New here.  I've been reading for almost a year and been on the path to getting a diagnosis.  Like everyone else my story is pretty long, and have been dealing with digestive issues since I was a child (over 30 years).  I was hospitalized for a couple of weeks when I was 10 because of it.  Anyway, over the years I've pretty much been considered a terrible hypocondriac.  But what else can you do but think you've got "everything" when you don't feel well and you can't get answers anywhere?

 

I stumbled onto this "celiac thing" in April last year.  The pieces just fit too well that it was freaky.  It sure would explain a heck of a lot of stuff in my family.  When I sent the info and several links to my sister she answered "Oh my God!, that's us!".

 

So, although it took me forever to get a GI to see me (not a simple process here), he actually listened to me and tested me for Celiac, although he really didn't think that's what it was.  I'm glad he at least humoured me.  I don't know what specific test he did, but it came back negative. BUT that was useless because he also tested my overall IGA and told me that I had very low results and that I am IGA deficient.  Therefore, the test was useless.  I also came back very low ferritin (although he said I wasn't anemic).  As a result, he has decided to go ahead and do a colonoscopy and gastroscopy (is this the same as endoscopy?) and he will biopsy my small intestine at the same time.  He still thinks I'm not celiac, but he says he might as well do the biopsy since he's there. This is in a couple of weeks. 

 

Here's my questions/problems:  I am so upset about being IGA deficient!  I feel this is going to make it so much harder to be properly diagnosed.  If the biopsy is negative, I'm going to be so upset because what other means is there for someone like me to get the diagnosis otherwise?  Does IGA deficiency negate the possibility of accurate testing across the board?  I see so many tests mentioned and I have no idea which ones require IGA.  But it does seem that the most accurate ones require IGA.  Can someone clear this up for me? Are there other tests I can request? Also, I've had a weird rash on my shins that comes and goes.  The derm told me it was psoriasis, but my hubby (and his whole family) suffer from psoriasis, it looks nothing like that.  Can you have DH if you are IGA deficient?  The rash usually appears on both legs simutaneously as well as my wrists and base of my back.  This time it's only on my left leg and isn't as severe, so I'm doubting again.

 

Anyway, thanks in advance for any help and info.

Welcome to the forum, nosy parker.

Your doc should do some more blood testing...you need to get the TtG IgG, Deamidated Gliadin Peptides (IgG and IgA are both usually done even if you are IgA deficient) and you can even get an anti-EMA IgG version but that is uncommon and the doc would have to make a point to order it specially.

Your low IgA doesn't negate the possibility of accurate testing, the doctor just needs to order the appropriate tests.

A colonoscopy won't tell him anything about celiac, though it will rule out cancer and inflammatory bowel diseases like Crohn's.  You DO need to make sure he does a good number of samples from an endoscopy that is done through the stomach (from the "top" rather than the "bottom").  If he doesn't take enough samples, it is a wasted effort.

As for your rash, that can be biopsied to detect dermatitis herpetiformis.  The biopsy needs to be done on HEALTHY skin right next to the rash, not on the rash itself.  If you test positive for DH, you don't need anymore testing.

Yes, it is normal to have other intolerances (though not everyone has them).  Some of them might go away after you have healed.  That is why the experienced folks here
recommend doing a "whole food" diet for a while, before trying to replace your favorite gluten-y foods with gluten free versions.

Soy, corn, dairy are all common contributors to distress.  Some people are intolerant of xanthan gum, which is used in a LOT of
products as a thickener/stabilizer; it is found in ice creams, salad dressings, baked goods, and more.

Best to stick with the simple; fresh meats/fish, fresh fruits and vegetables, basic flavorings...olive oil and butter go a long way, as do fresh herbs.

You might find a digestive enzyme helpful.

I've seen some of your threads and several have recommended an informational thread for you...if you haven't gone to read it yet, IrishHeart's Newbie 101 thread

is the greatest information source all in one place on this site.  She has amassed a wealth of information, she has a LOT of experience with autoimmune diseases.  She also happens to be one of the really great people around here!

You are a great blessing to your precious mother!  I am very happy for you, you have done a wonderful thing for her!  Thank you for coming back and sharing this update.