Ok...so How Would You Proceed?

[mommy2krj]

Well....the other blood tests came back. Little man is negative on the EMA IgG (I think that's the test....I know it started with the E) and is negative for the genes for it as well. So they are telling me that means that he doesn't have Celiac and he couldn't possibly have it.

 

So why oh WHY did he have a positive tTg?

Right now I am continuing on the gluten free trial and we are keeping the appointment we have in October. I need to see if this will help clear up his symptoms and I know it's helping me...I feel better not eating this stuff. I know it can still be NCGS which is why we're staying on the gluten-free trial.

They did also mention going to the allergist.....maybe we will after the gluten-free trial if nothing comes of that.

So....I just don't know any more. One minute it is....the next it isn't. Frustrating. So right now....I think I'm just going to treat it like it is and see what happens. Not changing information for anyone right now. Not until October.

[nvsmom]

(((Hugs)))

The doctor, in my opinion is completely wrong. The EMA IgA (endomysial antibodies immunoglobulin A) is usually only positive in fairly advanced cases of celiac. It is similar to the tTG IgA test but the tTG helps cause that initial damage in response to gluten - celiac eats gluten and intestines get damaged.

The EMA on the other hand creates MORE vill damage in response to the damage already done. It is like the EMAs saw damage was happening and decided to scrape off the top layer of damage with hopes that that will remove whatever caused the initial damage... Doesn't work of course. LOL For that reason, EMA only shows up as positive when people have had untreated celiac disease for some time (ei. years) and that will exclude most young kids.

Take my tests for instance, I suspect I have had celiac since babyhood so when I finally got tested my tTG IgA was >200 (reference range 0-20) and my EMA titre was 1:40. After one year gluten-free, my tTG IgA was down to 34, but my EMA was negative - no ongoing severe damage was triggering it anymore.

I believe your son has celiac disease, but it hasn't had time to become severe...a good thing.

Best wishes dealing with the doctors... It can be trying and confusing.

[mommy2krj]

(((Hugs)))

The doctor, in my opinion is completely wrong. The EMA IgA (endomysial antibodies immunoglobulin A) is usually only positive in fairly advanced cases of celiac. It is similar to the tTG IgA test but the tTG helps cause that initial damage in response to gluten - celiac eats gluten and intestines get damaged.

The EMA on the other hand creates MORE vill damage in response to the damage already done. It is like the EMAs saw damage was happening and decided to scrape off the top layer of damage with hopes that that will remove whatever caused the initial damage... Doesn't work of course. LOL For that reason, EMA only shows up as positive when people have had untreated celiac disease for some time (ei. years) and that will exclude most young kids.

Take my tests for instance, I suspect I have had celiac since babyhood so when I finally got tested my tTG IgA was >200 (reference range 0-20) and my EMA titre was 1:40. After one year gluten-free, my tTG IgA was down to 34, but my EMA was negative - no ongoing severe damage was triggering it anymore.

I believe your son has celiac disease, but it hasn't had time to become severe...a good thing.

Best wishes dealing with the doctors... It can be trying and confusing.

Thank you for explaining that to me. It makes sense. I thought the D test (yeah, I'll get these names down at some point!) was more sensitive for children....but she said they only use that test on really young children....so I'm thinking their cut off age for that test is well before 6 years old (which by the way, I think is ridiculous!)

I don't think I will ever get past the fact that his tTG came back as positive...genes or no genes. I'm just not comfortable saying we're just going to ignore the fact that one test came back positive. That bothers me. There's just that feeling in my gut and I learned a long time ago to listen to that feeling.

I plan on doing this 3.5 month gluten free trial and then doing a gluten challenge to see if anything changes. Right now I'm thinking he's going through a bit of withdrawl and just having to be in circumstances where everyone else gets to eat things that he doesn't get. I totally spaced on birthday cake today! I fed him supper before we went to the party but totally spaced on the cake! I felt so bad but thankfully we were with friends and they saved the day with a couple popsicles. I know he'll have to deal with it but I don't think he's associated the stomach issues (as they haven't cleared up yet) with eating certain types of food....and well...he's six.

I am not telling anyone any different right now, either. Not even my husband because it's been too much work trying to convince everyone about the Celiac's to begin with. *sigh*

[nvsmom]

You are right that the DGP tests (deaminated gliadin peptides) are really good tests for all kids... it is also a very good test for adults!  There are a few board members who were diagnosed with a positive DGP test but had negative tTG tests. they run a few types of tests so they are more likely to catch all cases. Your doctor is a bit misinformed about the testing.

 

This celiac guideline was put together by the World Gastroenterology Organisation. It goes into more detail on the tests on pages 10-12. It's an interesting read, and really good to have on hand to quote from to misinformed doctors to disbelieving family members.

 

I suggest keeping a journal of his foods, recipes he likes, symptoms, as well as height and weight while he goes gluten-free. It really helps to have that to compare back to as symptoms change very slowly sometimes so it's not really noticeable unless you look back a few months. Plus if you keep track of how his health changes, you won't have a need to put gluten back into his diet in 3.5 months to see how it makes him react.  Why make him feel ill if it's not needed, right? 

 

If you do decide to try gluten again, you might want to try going gluten-free for 6 months instead of 3.  Many of us were still struggling at 3 months gluten-free, and some of us even had setbacks as our bodies adjusted. It can take months to years to feel better and can't be rushed, although kids often do heal faster that us "old" people. That's another reason I advise skipping a gluten challenge unless it's for testing; it could potentially set hi health back for weeks or months. 

 

I feel for the little guy at the party. My kids have had that too (they are now 5, 8, and 10) so I now bring brownies or cupcakes for everyone, and bring gluten-free food options for them if it is a sit down meal (like hotdogs or a small gluten-free pizza). At Halloween, I have gluten-free goodies that they trade the "glutenous" treats for, which I then give out the the neighbourhood.  LOL

 

You'll get into the swing of things soon. One tip many moms use in mixed gluten-free and non-gluten-free homes is to only have gluten-free treats in the house, that way he won't feel left out. We do that too. Two of my boys have a problem with gluten but the third appears fine, but he is gluten-free too in  order to simplify things, and because wheat foods are not that good for him anyways. 

 

hang in there.

[Celiac Mindwarp]

It is all confusing isn't it?

I have NCGI and negative genes, and I can tell you that my life has been transformed going gluten-free. The symptoms can be just as severe, and as recognition of the condition is so new, there isn't as much research as for celiac yet.

I kept a record of symptoms before and after gluten-free, which helped my doctor diagnose me, and a food diary which helped me work oil other intolerances.

My son has severe nut allergy, so for parties I take some safe cakes, nicely decorated, and a few sweet treats for if there are any little prizes etc.

He has a 'swap box' at school so if there are treats he can't have he can choose something else.

He is also 6, and has adapted well, always asking if any food offered is nut free. I think he doesn't want to feel that I'll again.

Good luck

Mw