Results: My 6-year-old Just Tested Positive On Four Blood Markers For Celiac

[April in KC]

Hi there, I posted a few weeks ago...my first quesetion was about a mom & baby with Celiac symptoms. That's myself and my infant son. This post is about my oldest son (out of three).

I asked his pediatrician to test him for Celiac. He ordered the Gluten Sensitivity Panel from Quest / LabOne. It included AGA-IgA, AGA-IgG, Endomysial Antibodies, and Reticulin Antibodies. It did not include Tissue Transglutaminase or Total IGA (but based on results there's no deficiency of IGA).

Here are the results:

AGA-IgG = 22 (positive), with reference range <11 negative, 11-17 equivocal, and >17 positive.

AGA-IgA = 64 (positive), with reference range <11 negative, 11-17 equivocal, and >17 positive.

Endomysial Ab Titer = 1:40 (positive), with negative being <1:5

Reticulin IgA = 1:20 (positive), with negative being <1:5

My questions are: With this combination of tests, can I be certain that my son does have Celiac? Has anyone ever tested positive for all of these tests and had a negative biopsy? Is there any reason I need to subject him to the endoscopy and biopsy?

If we decided to skip it, what do I need to ask for in a kindergarten-aged child? A bone scan? Vitamin workup? (What do you ask for, as my experience with docs so far suggests that I need to ask for everything very specifically.) I would describe his health as fair. Chronic D. Pale. He's a brilliant and humorous little guy with some gross motor delays and small muscles. Aspie-ish but "not quite." Moody & constant behavior issues in and out of school. His height is average, but we're a tall family. He also has a severe peanut allergy, FWIW.

I'm feeling overwhelmed. I'm feeling crazy for thinking that we ALL may have it. My tests came back positive, too. The baby and our three-year-old will be tested next.

Thanks!

April

[HawkFire]

He will be fine. You can skip the biopsy unless you really want to give some doctor a practice run on his biopsying skills. Really, there is no need at this point. He could have a negative biopsy if the damage is still "spotty" and they miss the damaged section. Why go through all this? Your child clearly has celiac. It's ok.

So, your child has celiac and you may have an entire family of celiacs? I have two celiacs in this family. The rest are not celiac. We tried a "mixed kitchen" for awhile, but it didn't last long. Who needs the stress of stray crumbs?? Who needs two mayo jars? Who needs two peanut butter jars? I tell you, I do not. I do not like to scold my children for touching a gluten free sandwich with crumbs of gluten on their fingers. It's all so tiresome.

I am an old hand at this. I can tell you it all gets easier from here on in.

Your child will improve neurologically... almost for sure. Have you read about peptides in the brain? Get rid of the gluten, all of it- no cheating, and your child will show you a brighter side of his personality as he awakens from the peptide poisoning he has been suffering from.

I wouldn't bother with all other tests. Just make the dietary changes and he will begin to absorb the nutrition he needs. Get rid of the dairy for a few months. Dairy can slow down the healing if the vili tips are not fully grown. The inflamation is the problem. If you must have dairy, do so after a few months. Until then, rice milk is good. There is vanilla flavored. A tall glass of rice milk is not the way I would go as it does have a different taste, but add gluten-free chocolate to it as a treat since he must make so many adjustments. Pour chocolate rice milk on his new gluten free cereal. Show him that having celiac disease isn't so bad after all.

You should relax. One child at time. Young ones do not always test positive, but may later. Since you see the delays that undiagnosed celiac disease causes, you would be wise to treat the younger children as celiacs in order to prevent more delays in growth, motor skills, speech... Why risk it? gluten-free is easier than dealing with developmental delays, correct? I think so.

Be peaceful, be happy that you have this diagnosis so early. Your child will live with this disease the rest of his life. The way you react to it, your stress level, your acceptance of this disease will be deeply ingrained in his spirit. He will thrive psychologically and physically with this diagnosis or he will be burdened psychologically and physically for the rest of his life with this diagnosis. You set the tone.

[Guest WashingtonLady]

You are SO BLESSED to find this out early on!

When I read your post, I almost cried. I reminded me so much of years long gone--the way you described your son. Whether he's actually autistic spectrum or not, I wouldn't hesitate to make the changes to a gluten-free lifestyle for him asap. Even if he's only bordering the spectrum or has traits, you will see a tremendous difference in every aspect of his life. Well, actually, hopefully you WON'T see it, 'cause all the problems associated with Celiacs will be a non-issue for you by the time he's a little older. The younger your children are, the better, to start a gluten-free diet. There are so many yummy gluten-free snacks available and supports in place (from what I'm learning), that it's completely "doable."

My Aspie son is 19 now and I never even heard about gluten sensitivity, leaky gut, "pale but quirky," or ANY of it until he was into his teens--WAY too late to make life changes of that magnatude without his cooperation. You have such a privelege (and challenge) to make a monumental difference in your child's life! I wish I'd known 20 years ago what you know now. I'm already educating all my kids about what they may have to embrace---my gluten sensitivity didn't present itself very severely until only the last several years--although I've always had severe eczema (as do my kids) and asthma. Ha! Now that I think of it, my parents had me on a special diet when I was first born because of 'colic'. Poor baby...I wonder what a gluten free diet for my mom would've done for me at the time! (My mother is currently in denial about her own gluten sensitivity and refuses to stop eating glutens/breads--despite serious reflux, intenstinal, nerve, and sleep disorders.)

Ah well, I will remember you in my prayers...a Mom on the brink of a wonderful adventure! Congratulations for being so proactively involved and willing to do the hard things! And, by the way, I completely agree that a biopsy seems a waste of time, money, energy, and stress. Why put the boy through that when there's enough evidence to point you in the right direction? Worst case scenario: he's not actually a celiac, but suddenly he's eating REALLY healthy. If he's at all austistic spectrum, the lack of gluten in his diet will make a couple startling changes: the paleness will reduce then disappear, so will the dark circles under his eyes, and his ability to handle changes and social stresses will greatly enhance. It's amazing. There is a fantastic book written by a 12 year old Asperger boy in England about his whole family going gluten and casein free....I have to say, "Google it!" though, as I cannot recall the name.

My single caution: be prepared. Your boy WILL go through withdrawls. It's ugly, but necessary, and TOTALLY worth it.

I hope I haven't been too preachy about this! I apologize if I have. I'm just very excited about what's going to happen for you and your family! It makes me feel so very good knowing what information is out there for people now.

Anyway, that's all. Thanks for the ear. God Bless.

[jayhawkmom]

Hi April.

We are in a similar situation. Our oldest son had positive IgA & IgG antigliadin antibodies, and a slightly positive tTg. We decided that since the rest of our family is gluten free, we'd "try" the diet with him before consenting to the endoscopy. He's doing great, so we aren't going to go any further. (He'd also been tested with negative results at 2 & 4)

My son has been dx with Asperger's - and we are trying to decide whether to go the one step further and remove casein from his diet. We'll discuss it further with his doctor on Friday.

I do agree about the withdrawl. My son had an AWFUL time for the first 7-10 days. In fact, I was tempted to cave and let him eat gluten. But, then I saw some positive issues - he was no longer complaining of tummy aches, and his head wasn't hurting as much. We held our ground - and he's now been gluten free for almost 2 months. It's a good thing! =)

[April in KC]

Thank you all for the replies and heartfelt encouragement about recovery. I do feel like it's a blessing (and a direct answer to prayer) to have very clear-cut indicators like the test results we received for N. He is just the coolest kid, and it seems like he has had so much on his plate. N. has had a really tough time on the behavior front, and finding a medical cause offers us some hope that things might be (a bit) easier for him in the future as he recovers from gluten. As long as his physicians do not come up with compelling reasons to do a biopsy, I think we will just go gluten-free.

Tomorrow is the day I take the two younger kiddos for testing. I swear that, although i know it's not statistically likely, I think all three of my boys are gluten-intolerant and/or Celiac. We have watched as our three-year-old J.'s personality has changed in front of our eyes. He is still a sweet kid at times, but his irrationality and tantrums are out of control these days, and yes, he has the big "d." Plus, he acts like he's addicted to dairy, wheat products and soy milk. If you ask him to eat something else, he has little to no interest. Of course, we force him to eat other things, but it's getting to be a three-times-daily battle. Recently, we cut back on his gluten (not completely out as the test is tomorrow), and boy has he been irritable about it.

And D., the baby, has bigger issues, but I believe gluten is one of them. He seems to have multiple food allergies. The first time he threw up, though, it was to oatmeal cereal. When I took gluten out of my diet, some of his terrible eczema cleared up.

Jayhawkmom, are you in JoCo or the KC area? I'm in Missouri, NE of KC. I work in KC, though. Do either you or your DH have gluten intolerance or Celiac?

[tarnalberry]

Some doctors want to have the biopsy done, as it is 'classically' part of the 'gold standard' for diagnosis. Not all want, or need it, to give a diagnosis, but it varies by doctor; there is no truely standard rule. I would not expect anything else to give those test results, and if a dietary change produces positive results, I think you'd have all the confirmation you need.

Talk to your doctor about the pros and cons, given the knowledge you both now have, of the biopsy. Let him/her know where your preferences are, and if it's for not having the biopsy, make sure the doctor has some *very* compelling reasons, because it is *your* decision. (And "it's a lifelong change" is *not* a sufficiently compelling reason.)