How to handle eight year old daughter pre-diagnosis

[aliciahere]

Hello Everybody!

I was diagnosed just over a year ago through bloodwork. I had an endoscopy last summer that confirmed the diagnosis. After I was diagnosed with bloodwork, I had my two children tested and neither of them showed up with any markers for celiac. Fast forward to this winter. DD8 has been very tired, run down, moody, feels like she is getting sick, but ends up not getting sick, sore tummy, etc... several times since Christmas. One evening she had an anxiety attack. Booked an appointment with the Dr. and had her tested again (ug, even with my history, he wasn't going to test her, I had to specifically request it, grrr). Sure enough, her Anti-transglutaminase IgA came back as 7.4 (with 7-10 considered as a weak positive). Dr. is referring her to a Pediatric Gastro, but our appointment isn't till July 6th, so lots of time to do more damage, and instructions to keep eating gluten. However, the July 6th appointment is just the referral, who knows how long it will take to actually diagnose her.

 

Of course, we are not changing her diet - she is still eating gluten. We need the definitive diagnosis in order to get diet compliance from everybody. But man, oh man, what a long time to wait with crappy symptoms, and flares that are getting worse, and closer together. She is missing so much school. It's such a long time to wait for her referral (though longer than the original one year wait that my Dr first told me ). Is there anything I can do to ease her symptoms? Could I just "reduce" her gluten, so that she is only consuming around one piece of bread a day? Do u think that will help? Any advise or recommendations would be greatly appreciated.

 

My hubby is worried that there are other food sensitivities that are also affecting her, and wants her to go to a natural path Dr. in the meantime. I'm of the inclination to wait and get rid of the gluten after diagnosis and then see how she is (as I strongly believe that any other sensitivities are simply aggravated by her celiac). Any opinions on that?

[cyclinglady]

Welcome!  My heart goes out to you!  My own kid (15) has tested negative, but with each tummy ache, I worry a little.  ? 

i think that the equivalent of 1 slice of bread should be enough until that Ped GI consult, but can your GP order an entire celiac panel?  That might give you a clearer picture sooner as kids often test better on the DGP.  I would recommend  taking her off all milk for a while to see if that improves symptoms.  I just had anemia, but I was told that I had milk allergies when I was young so I was not consuming milk so that might have been the reason for my lack of tummy issues.  I also had others intolerances and allergies that contributed to gut pain that I knew about before my Dx.  So, keep a food diary to help identify foods that trigger symptoms.  For instance, nuts could be a issue if there is villi damage.  They are hard to digest!  

Most of my intolerances have resolved since I went gluten free.  I still have allergies to a few foods that will probably never go away and run in my family.  

 

 

 

 

[Gemini]

You mean you have to wait until July in order to just get a referral?????????  Are you in the US?  That is inexcusable because your daughter is going to be just miserable by then.  Is there an alternative way for you to go so that testing can be speeded up? 

As for a Naturopath doctor, sometimes they can do more harm than good.  I agree with you that your daughter needs to be seen by a medical doctor because of her age and the fact she will need notes for school if she is diagnosed with Celiac.  You'll have to go through all the processes that ensure they will keep her from getting sick.  You may also be correct about other food issues she may have.  Sort out the Celiac diagnosis first and don't worry about any potential others until you have that nailed down.  Sometimes people take out too much from their diet when they don't have to.

I think the recommended amount for testing is at least a slice of bread per day until testing. You do want to make sure she is eating enough to make the test valid. I wish you luck........I hope your daughter isn't too miserable from the wait and the gluten!

 

[cyclinglady]

If you already have the actual referral and appointment with the GI, can you call the office ask if there are any cancellations?  This has worked for many waiting in diagnostic limbo land!  

[aliciahere]

Thanx for the replies everybody. I called but there are no cancellations. I would never give up Canadian health care, but sometimes the waiting lists leave something to be desired :/ She is doing much better on "reduced" gluten, making sure to eat at least some gluten every day. I do believe that I've figured out what her worst issue is. She would come home from school coughing and feeling bad and saying her stomach hurt and that her throat hurt. I kept thinking when she said her throat hurt that it was a "getting a cold throat hurt", but now I think it is actually bad reflux, so one piece of the puzzle figured out. Still waiting for the appointment patiently. 

[Jmg]

This must be awful for you both. 

One suggestion, keep a food diary for her and document how she's feeling. It could be helpful in diagnosis, but also perhaps in later years if she's tempted by gluten or anything else she doesnt tolerate well. Hopefully her memories of being poorly will fade, so having the record may be useful?

Best of luck to you both!

[aliciahere]

So I'm going to post an update, just in case somebody comes upon this and wonders. My daughter did go for her endoscopy - clean. Some very minor inflammation on one sample but it was not significant enough, and they don't believe that celiac would be the cause. Ended up doing bloodwork for genetic testing. I don't have a copy of exactly what genes were tested, as i just received results over the phone. She is positive for a celiac gene. Her other vitamins and bloodwork came back fine, other than Vit D which was a bit low (normal for winter at this high of a latitude).

AT IgA was low this time, 1.5 (when >7 - <10 is a low positive and >10 is a positive). Has anybody else seen a result go down like that? With the way she was feeling and my history, it seems unlikely that it was a false positive. She has been eating gluten, though it is much lower than what a child on a standard diet would eat. Maybe 1-2 servings a day. Very curious. 

Anyhoo, her Paeds Gastro is sending us bloodwork forms to check in one year and recommending to test her once a year or if symptoms come up.