My Son's Bisopy Results Are In.

[VydorScope]

Well the GI doc called to day with my sons results, and the biospy "showed evidence of a food allergy". When I told him about how we swtiched my son to the gluten-free diet and the results we are getting he asked if we could rush my son in first thing tommorow for a celiac disease blood test. He siad that while being gluten-free free for almost a week would effect the test, the sooner we tested the less impact it would have. He also said no matter what the blood test shows keep him on the gluten-free diet for now, and if the blood test shows negaitve to do a test exposure to gluton in a year or so. If the blood test shows postive then to keep him of gluton, for life.

That sound typical to y'all?

As for me... I gave my blood this AM, and wiating to hear back, prbly be a week they siad. Since I have had a endoscopy and now given blood, I think I am going try going gluten-free too, theres no more tests they can run so I will not be hindering anything. Frankly Im sick of being in pain and tired.

[VydorScope]

My broswer being screwy I see this twice here, but only posted it once. Sorry if I messed somthing up.

[KaitiUSA]

With a positive biopsy that means there is damage so he does have celiac and should now be gluten free for life. He should not be on gluten a year from now or ever.Hope this helps

[VydorScope]

What if the blood test disagrees?

[Guest nini]

you can get a false negative or inconclusive result from a blood test... I think that positive dietary response is a much more accurate test than a blood test (JMHO)

[VydorScope]

Ug somthing we wrong yesterday and I can not figure out what. But around 1030pm both me and my son feeling pretty bad. Thing is everything we ate was either labled gluton free or, it did not apply (ie rasins).

[kaylee]

Did the doctor specifically say there was damage to the villi on your son's biopsy? "Evidence of a food allergy" isn't quite as clear ...

You have been seeing such good results on the gluten-free diet that that is already a strong indication that being gluten free is a good plan. There are tables available that show the probability of having celiac disease with various results on the various tests. Also, if the blood tests are positive now, you can have then redone after a period of being gluten free to see if the values have fallen back to normal range. That would be an additional indication.

As for apparent gluten reactions to an apparently gluten-free diet ... I'm still wondering about a similar incident a number of weeks back when my son and I also both reacted with our respective set of symptoms with no obvious change in diet. No idea what happened. I checked absolutely everything, as far as I can see (e.g., called back companies I'd already called to confirm continued gluten-free status of a product, etc). One of the vagaries of life I could do without, but at least not very frequent!

Best,

kaylee

[VydorScope]

  Did the doctor specifically say there was damage to the villi on your son's biopsy? "Evidence of a food allergy" isn't quite as clear ...

From what I could tell there as no real damage, or at least not a signifigant amount. He siad the following things...

1) We sent him my son's growth charts , and he did not like the trend on them. I suspected as much thats why I fax'd him the charts. He did not specify what he did not like, but the fact that my son has not grown since 16monts, and has lost some wieght is probably a big part of it. (he is 21 months old now)

2) While the bisopy was not "typical" of a celiac disease bisopy, it could possibly indicate celiac disease in the "early stages". The damage he saw was mainly in the stomache, not the small intestin. I got the imperssion that had he seen the same exact thing in the small intestine he would have called it celiac disease.

3) He felt the succesfull diet change was a big indication that we were on to something. He was just hesitant to call it celiac disease based on his data. He stressed that if it was celiac disease that my son would have to be on a restricted diet for life, and that we should not jump to that lightly. Sounded to me like he was hoping it was not celiac disease, more then convinced that it was not.

If we did not have the successful diet change, the bisopy would have been ruled inconcslusive and he would have sent my son to an allergist for further testing. The diet change, plus the recently discovered family history of celiac disease makes the bisopy look like it fits better. I will be taking my son at 9am for them to take blood. This will bother my wife alot more then my son, but it needs be done, IMO.

[Boojca]

Vincent,

My son is 3 years old, he was diagnosed last June at 2 1/2. Just because there wasn't a lot of damage doesn't mean much...the fact that your son is only 21 months old means there wasn't a lot of time to cause a lot of damage! Being off gluten even for a week for a child that young will make a difference in the biopsy. The lining heals quickly (relatively) and with small children even more so, so the fact that they saw any is good enough in my mind!

Keep us posted, but it sounds like celiac disease to me! Especially if the diet change has helped. My son had no "symptoms" either...just stopped growing, and then suddenly dropped a "ton" of weight....he weighed 27 1/2 lbs in January 2004, and my mid-May 2004 weighed 23 1/2 lbs. He had no energy, obviously bc he wasn't getting any nutrients.... We did the tests and walla. celiac disease. We put him on a gluten-free diet immediately following his biopsy (I'm surprised they did it backwards for you...we had the blood tests done first, it took a week for those to come back bc they MUST be sent out, and then the following Tuesday after the results were back we had the biopsy...and the doctor told us NOT to go gluten-free during that week bc it would change what he saw. And I trust him, he was on the national committee of GI's who developed the standards for diagnosing celiac disease in children last year....)

The good news is that after merely a week on the diet he was like a new kid, and almost a year later now we've gone from 18/24 month clothes to 4T AND I've had to buy 3 pairs of shoes in the last year!!! So, it's definitely working. Killing my wallett, but who cares!?

Bridget

[VydorScope]

Boojca,

I guess I confused you. He had the bisopy FIRST, then we put him on gluten-free, then the doc called and wanted to take blood. The fact that the gluten-free diet had an effect was the reason the doc orderd the blood test. They took the blood this am, I looked over the paper work, the doc ordered "all" four tests in that section of the lab form. So I guess that means its a "complete panel" .

Reguradless of the blood results both him and I are going gluten-free (and my wife siad she will too just to keep it simpler) for a while and see how it goes.

[Guest nini]

re: raisins, my daughter had a reaction after eating raisins one day and then I read that some brands of raisins uses flour to coat the belts that the raisins ride along on before they get boxed up.

[VydorScope]

re: raisins, my daughter had a reaction after eating raisins one day and then I read that some brands of raisins uses flour to coat the belts that the raisins ride along on before they get boxed up.

I emailed sunmaid, and they sent back a lenthey email, but this paragragh is key I think...

There are no additives or preservatives in our Sun-Maid Natural

Sun-Dried Raisins or our

Zante Currants.  When the raisins are ready to be processed, we clean

the raisins using

large aspirators (vaccums), graders, and shakers to remove stems, dirt,

and other foreign

objects.

We then do a very thorough washing in fresh water which not only

rehydrates the raisins,

but also serves to move the raisins along the conveyor systems during

processing.  There

are no additives used to coat the raisins.

So I do not think it was them.

[cdford]

Especially for the first few months, your system can react to seemingly nothing. Sometimes our systems are just more sensitive than at other times. Mine does that periodically for no apparent reason. If it is a significant incident, I can usually point it back to a specific new food or a changed formulation.

Also, if you have non-gluten-free folks in the home, someone may not have been thinking clearly and not have been careful enough to avoid some small cross contamination.

[Guest nini]

yeah well, you didn't say it was Sun Maid Brand!!! Then I wouldn't have said anything because I KNOW they are safe... LOL!

my husband isn't gluten-free and sometimes he will double dip in the mayonnaise or peanut butter and get crumbs in it, and I don't realize it until it's too late. I've had to throw out entire bottles of condiments because he does this... It doesn't work to just write "CONTAMINATED" on the jar because then HE avoids using that jar too and does it YET AGAIN TO MY NEW JAR!!! So my daughter and I have been accidentally glutened this way. The only way I've found to get around it is to buy a brand he doesn't like (like natural and organic products ) and then he won't touch them!

[plantime]

Nini, my husband double-dips all the time in our condiments, so I use aquirt bottles for the ketchup and mustard, and put MY peanut butter in a child's sippy cup (left over from having a home daycare) with the lid on it. He uses the jar, I use the sippy cup. It is too "babyish" for him to even consider using! I just use a bit of plastic wrap under the lid, and it seals very nicely!

Vincent, having the bloodwork done won't be a bad thing. It does sound like a weak positive on the biopsy. Considering his age, though, even a weak positive would be strong. It is good to catch it this early in his life, think of all the damage and illness that he will not experience!

[VydorScope]

Vincent, having the bloodwork done won't be a bad thing. It does sound like a weak positive on the biopsy. Considering his age, though, even a weak positive would be strong. It is good to catch it this early in his life, think of all the damage and illness that he will not experience!

You mean like me? hehe

Well giving blood for the test went extremly well. He did not even fuss when the nurse stuck him. I was shocked about how well he sat still. Once it was over and he was in his stroler he cried, but at least not when the needle was in hi s arm. A few rice crackers and a sippy cup got him over it. Now we wait..... just like we are wiating on my blood test.

He is sleeping so mcuh better, and eating so much better now, AND his dieheara is gone, AND he is off all his medications... how could it NOT be gulten at fualt reguardless of what any stilly test says.

[VydorScope]

re: raisins, my daughter had a reaction after eating raisins one day and then I read that some brands of raisins uses flour to coat the belts that the raisins ride along on before they get boxed up.

Just got another email from Sunmaid... y'all prbly know this, but just incase...

May 19, 2005

Dear Vincent,

We do not dust the lines with flour.  All of our dried fruit products

are gluten free.

Sincerely,

Sun-Maid Growers of California

Consumer Affairs