Update On Timothy

[VydorScope]

First a refresher...

My son spent from his birth (8/13/2003) though early May 2005 extremely ill. Distended tummy, spitting up blood, 7+ bouts of highly acidic diahrea a day, spent his nights writhing in inconsolable pain and after a while I even had to set his car seat SMALLER as he lost ground. Mental development was in regression. I could go on, but no one should ever have to live through all that... No medication could help him. No doctor had any answers until May 2005 when he was tested for Celiac. The Endoscope was not conclusive (showed damage, but not in the right place), but the blood work told a bit different story. Of the four different blood tests for Celiac, one was a very solid positive at more then double the "normal" max. (Gladian IGG ABS) At the time of his blood test he was down to a diet of Cheerios and oatmeal predominantly as we were told they were the safest foods. His IGA was 12.

We put him on an extreme strict gluten free diet. We did not leave ANYTHING to doubt. Threw out Tupperware, pots, pans, anything that was at all suspicious. No one was allowed to bring any gluten into our house, ever. We avoided B-Day parties, and eating out at all.

The turn around in his health was DRAMATIC. To the point none of the doctors cared what label was put on it any more they all just said "KEEP HIM OFF GLUTEN!" Which we did. ALL of his symptoms, EVERY ONE OF THEM, were reduced right away, and with in what seemed like no time at all completely gone. The healing powers of a small child are insane, and he proved it again. Shot back up to the up 90's on the growth charts, bowl movements normalized, and so on. He even started SLEEPING through the night.

Classic Celiac case is what EVERYONE said.

Esply when he got sick after eating animal crackers at day care one night... just one little cookie.

A few months ago, I finally gave in to a growing feeling in me that he needed to be retested. Honestly there is no logical reason to do it, can come up with silly circumstantial things, but in the end it was just a growing feeling. So one night I gave him a bowl of WHEAT pestles that also had barely in them. He loved them, NO reaction at all. Since then he has been eating normal cearel, wheat bread, gold fish crackers, and so on. A completely "normal" gluten filled diet. Not a single sign of reaction. 100% normal bowl movements, no less of mental devoplement, still sleeping through the night and so on. Nothing. No reaction at all. Unless you count his new addiction to Gold Fish Crackers!

Last Monday we took him back to Vanderbilt Children's Hospital for retesting. I called yesterday am cause I had not heard. The nurse that called me back with the results was obviously not the right person for the job as it took a lot of explaining to her to get her to read the report right to get the hard numbers. (I did request they mail us a copy)But she could read the summary part to me with out coaching, and since my sons records show we put him on the gluten-free diet and he got better, she wrongly assumed the reason for the test and said "He tests all came back normal which is consistent with a gluten free diet"

Did you catch that? Let me restate it for you how she should have read it..

"Hallelujah! YOUR SON IS COMPLETELY NEGATIVE FOR CELIAC ON ALL TESTS!!!"

That pesky Gliadian IGG ABS score that was high last time? ZERO this time. IGA? 0.2 this time! All this while on a GLUTEN PACKED DIET for a few months.

Up till this point in the post, everything I said has been a fact. Going forward we will have to make some guess and interpretations. Today we go see his new primary care doc and I plan to see if they can get the blood work fax'd to them so that I can see it sooner. This new doc knows nothing of the trials we been through, all he will have is paper notes. But I am planing to ask him to refer us to someone one to re test food allergies. Nothing of importance was discovered the last time we tried that, just egg. But his reaction to egg is very minor and completely clears up within minutes after a dose of benydryl.

Some of you reading this have traveled this road with us, and know all the parts I skimmed past for brevity. But at this point all that is left to do... is buy a box of Cheerios. That is the one thing we have not put back in his diet... Oats. Oats. The "safe food". Oats. Oats the food that if you try to search for a non-celiac intolerance to, you will find... just about NOTHING. Everyone recommends Cheerios as toddler food, and oatmeal is the magic cure for your breast milk supply issues, and so on.

So we are faced with two possibilities left here...

1) He has an extremely rare, almost unheard of non-celiac reaction to oats - and the blood test was just wrong

2) The blood test was right, he had Celiac and he was cured of an incurable genetic disorder.

Once we eliminate #1, there is only #2 left... so it all may come down to a box of Cheerios to determine if this is a miracle or a stroke of luck that the gluten-free diet just happens to remove oats too. I know most will put the odds on #1... and most will hope for #2. I will report once the oats is either confirmed or eliminated, and then you can decided what you wish to believe about it.....

For those of you that dropped to the bottom of the post to see the conclusion only , here is a summary :

* Sick child - critical condition - put on "safe" diet based on oats, and few other things -no help.

* Blood test - based on report followed all "normal" procedures, was not at lab to confirm this - positive celiac disease.

* Endoscope shows damage "consistent with reaction to food"

* Barium Series shows nothing physically wrong, with in the limit of the test

* Put sick child on gluten-free diet - (remove wheat, barely, rye, and oats from diet)

* Child gets better 100% fairly quickly.

* Child has accidental uncontrolled exposure to small amounts of gluten early on - Child gets sick again

* Child much later put on a full and controlled gluten challenge - no reaction (minus oats - untested)

* Child retested via blood test - Negative for celiac disease.

That is the "testable" set of facts, anything beyond that is a guess. And in the end, most of medicine is just "best guess testing" Before getting to the celiac disease test, all kinds of other things were tried, tested, and brought us no help at all. I abbreviated most of that here for sake of keeping post short.

So that is the promised update.... more to come after the oats testing which will likely wait till after his birthday party.

[jerseyangel]

Hi Vincent--

I'm glad you posted here, it'll be interesting to hear others' thoughts on this.

[blueeyedmanda]

This is very interesting. Please keep us updated.

[nikki-uk]

Gosh yes, - wonder how the 'Oats test' will go??

[Mango04]

So we are faced with two possibilities left here...

1) He has an extremely rare, almost unheard of non-celiac reaction to oats - and the blood test was just wrong

2) The blood test was right, he had Celiac and he was cured of an incurable genetic disorder.

Thanks for sharing your story.

I wonder if your son had an entirely different condition as a baby and the symptoms of that condition were exacerbated by gluten? I think many conditions besides celiac disease can cause a person to react negatively to gluten. Just speculating... I guess reitroducing oats would give you somewhat of an answer though. Hope you figure it out! Glad he's doing well though!

[Lisa]

Vincent,

So glad that that red-headed cuties is doing so well.

I just wanted to add somethings that I have read on these posts.

Several adults have posted that they were diagnosed with Celiac as a child and then it went "silent", only to reoccur in adulthood.

I have not come across any studies regarding this, though. I do hope that this is not the case for Timmy and that the Cherios may be your answer.

Keep us posted.

Lisa

[AndreaB]

Good point Lisa.

There is another poster on the board who "grew out" of celiac. His poster name is Tom if you want to ask him about his story.

I'll be waiting for the results of the oats challenge when you do it.

[VydorScope]

Vincent,

Several adults have posted that they were diagnosed with Celiac as a child and then it went "silent", only to reoccur in adulthood.

I have not come across any studies regarding this, though. I do hope that this is not the case for Timmy and that the Cherios may be your answer.

I have heard the same but it was always, at least what I heard, as children crossed in to adolecence. Tim is a bit young for that.

[VydorScope]

Got the blood test results! (got them faxed to my work)

These numbers are WAY better then I expected.. LOOK!

(hard to read some of the labeling, so guessing a bit...)

Gladdin IGG ABS 0 (<20 normal)

Gladdin IGA ABS 0 (<20 normal)

Endomysial TGA 0.2 (<7 normal)

Tissue Transgulaminase Antibody 0 (<7 normal)

And then 2 more that I can not read, that are both 0 with less then 20 as normal

There is not even a HINT of celiac disease in there.

[blueeyedmanda]

Wow!!!! Great News!!

[VydorScope]

Missed one more that says 50 with normal being 25-154. All I can read on that one is "quantitative blo"

[Cheri A]

Congrats on Timothy doing so well right now!!

I'll be interested to see what the next test shows for oats too.

Carleigh has many food allergies. Celiac testing was inconclusive for her, but the wheat allergy was positive.

[covsooze]

Wow!! I truly hope Tim stays well.

Susie x

[Nic]

Hi, I am so happy for your son that he is doing better. I can't help to now feel worried about what if the doctors are wrong, are we doing this for nothing. My son didn't see huge improvement until he was off of milk and his first biopsy came back negative (although it was then sent to Columbia University and was then given a positive).

Nicole

[kevieb]

vincent-----this is wonderful news to hear.

what about you------how are you doing? didn't your doc diagnose you with celiac?

[VydorScope]

what about you------how are you doing? didn't your doc diagnose you with celiac?

No. After 57.9 million tests, 5 trillion gallons of blood drawn, and things stuck in places that should not have things stuck in them it turns out I am just a very brittle hypoglycemic. Treating that with a high healthy fat (60% of calories), hight protein (20-30%) , moderate carb (10-20%) diet has finally got me well. And before you ask it was the reading of 40 on the glucose meter that gave it way (and it explains my addiction to raisins! LOL )

[VydorScope]

Hi, I am so happy for your son that he is doing better. I can't help to now feel worried about what if the doctors are wrong, are we doing this for nothing. My son didn't see huge improvement until he was off of milk and his first biopsy came back negative (although it was then sent to Columbia University and was then given a positive).

Nicole

To be honest I almost did not post because of this. I am throughly convinced celiac disease is real, and those that have it need to stay gluten-free for life. Please do not see my sons case as typical.

[VydorScope]

Saw the new pedi-doc. Well sometimes things just work out for the best (heh, I say that like I believe in coincidence... LOL funny stuff). This is our second meeting with this doc, and I was not impressed the first time. Wanted to try him again, just to be fair but it became fairly apparent he did not know much about celiac disease, or food allergies (the two most major concerns for us!) . In fact through the conversation I started to wonder what he DID know about. Nice guy, and all that, but this is my son's health. So I was wondering what would be the best way to see a different doc next time we came, and then he told us that he was leaving the practice on Aug 30th! So that solves that issue very nicely.

I did call Tim's pedi-gi in Nashville to arrange a phone consult to discuss the results, and the nurse said he would call tomorrow.