How To "maximize" Testing My Kids

[tri-gal]

My situation is this: I am convinced I have celiac but undiagnosed as I went off gluten to help my nursing baby. I am concerned about my kids, but as I have no diagnosis, I have little "leverage" for testing.

My 1 year old is still off gluten, as am I, due to his gluten and other protein enteropathy symptoms (plus FPIES to several foods, for those interested in / familiar with FPIES).

(Unfortunately, I was not tested ahead of my gluten free status.)

My 5 year old is displaying potential symptoms, and I'd like to get her assessed but don't want to mess up what might be one chance ot do so.

Her symptoms follow this list of q's:

1) Do you think her symptoms warrant testing or would it be more severe if she had celiac disease?

2) when is the appropriate time and what is the appropriate path so we don't loose a precious opportunity for an accurate diagnosis?

3) if we blood test too early, the door may be shut on us permanently thereafter, so advice on whether and when to pursue:

blood panel now?

or pay for enterolab stool tests to see if we would likely have anything show up first, combined with gene test

 

Here are her symptoms:

vague but on and off bloating and tummy issues, seems to be gluten related but hard to measure

alternating days of fatty, pale stools, floating and bitty after a higher fat meal

stools that pack a punch

some days of constipation or feeling she needs to go, but does not

dental - enamel grooves and a couple of misshapen baby teeth

mood swings and frustration fits seem more related to gluten days, but hard to prove

she seemed never to grow vertically but always in the "normal" range on the charts... until the past year when our family reduced her gluten (because I was 100% gluten free)

 

Many thanks.

[cmc811]

I'm in a similar situation except I did get tested and my results are being called inconclusive. Low positive ttg and Marsh I biospy isn't convincing enough apparently......grrr!

 

Anyway, my 5 year old is also having symptoms which is what really prompted me to get tested because I was getting resistance from the pediatrician when it came to testing him. Based on my positive blood test she ordered a total iga and ttg-iga for him. Both normal and so she has decided that she has ruled it out. Obviously, I don't think the 1 test is effective enough for a rule-out. So what I ended up doing is going around her. I have him scheduled with a pediatric GI in a week and I'm anxiously awaiting hearing his theory on my results and how that may change what testing needs to be on my son.

 

Moral of the story: find an experienced pedi GI and take her there. Explain everything and ask for a full panel. Make sure you let them know that you want to test while she's consuming gluten and since the house is gluten free you don't want to lose the window of opportunity. If they don't take you seriously call a different doctor. You have a valid point so continue to persue it!

[tri-gal]

Thanks so much for your feedback. Good for you for finding a GI specialist too. I'm motivated and inspired, so thanks!

When I was sorting through the maze of allergies and gluten issues last year, I decided to get a panel, by which point I had been gluten free for a couple of months. My doc initially said it would not matter....

Anyway, the results were deemed negative: I had a deamidated gliadin  IgG of 7.2 but lab says 10 and over is positive. Does this 7.2 result  suggest anything at all would people say? Meanwhile, my deamidated gliading IgA was 1.4 and translutaminase of 1.3 for IgA AB. My total IgA was 1.33, so I have no idea if this means I am on the low side of IgA generally speaking or how the other numbers relate to the total. I was left with no where to go for myself but "play around" with gluten, which I can't do whatsoever. I seem to have developed v active gluten reactions post partum with only  a few months of my gut deteriorating rapidly, so my theory is my gut started to heal relatively rapidly and no proof was left in my blood.

This entire chapter has been eating away at me, so to speak, with mounting anxiety of my children's health and no "diagnosis" to validate my concerns. Yet, I don't want my daughter to go entirely gluten free until I've figured it out.

[GottaSki]

While your DGP-IgG was not positive, I would run the Complete Celiac Antibody panel again to compare results -- while it will not be proof for official diagnosis -- if it has come down substantially it is yet another piece of the puzzle.  If it has gone up it will be an indication that gluten is sneaking in your diet and you need to review your diet, meds and supplements.

 

Since you remain in diagnostic limbo - yet your history, symptoms and reaction to gluten indicate NCGS (non-celiac gluten sensitivity) or celiac disease I would have the complete panel run annually -- I strongly believe more data is better

 

It's that or another challenge -- which you may have trouble physically completing.

[cmc811]

This entire chapter has been eating away at me, so to speak, with mounting anxiety of my children's health and no "diagnosis" to validate my concerns. Yet, I don't want my daughter to go entirely gluten free until I've figured it out.

I am in this exact situation. I have no problem going gluten free for myself because I think my test results provide enough of a case for it. It's my kids, mainly my symptomatic 5 year old, that severely stresses me out! The pediatrician hasn't thought it was Celiac from the beginning when I brought it up so the testing process has been difficult to get initiated for him. Now with a negative ttg, she has completely written off the possibility of Celiac. I specifically asked for DGP and basically was denied. She wouldn't order it, so I'm no help with that test.

 

Do you have the ranges for your results? All labs are a little different, so generally when you post a result you should also post the range the lab uses.

 

I'm sorry you're going through this, but trust me, you're not alone! I think many of us are in, or have gone through, diagnosis hell.

[tri-gal]

Thank you so much for your helpful response and suggestions. Very much appreciated and sound advice!

Best to you.