Went To Gi Today. . He Said It Isn't Celiac

[ptkds]

I took my 16 m old dd to the GI today. She had some blood work done by our ped to check for celiac, and she said it looked positive for celiac. So the ped sent the blood work results to the GI dr for our apt. today.

The GI dr said he doesnt' think it is Celiac disease. He thinks it is "Toddler diarrhea" and told us to keep her off all fruit for about a week and see if it helps (she eats lots of fruit).

Well, I saw her blood work. Here are the 2 numbers I saw: IgG 35, IgA 5. I just saw another post and that is about what her dd's results were, and her GI said it WAS celiac. So, now I am really confused. Any one have any help/suggestions? I will keep her off of fruit as he directed, but I am concerned that he is mistaken.

Thanks,

ptkds

[Guest jhmom]

Hi, I don't know your entire situation or all of your daughters symptoms and sorry to say I am not familiar with the celiac blood tests as all of mine came back negative too. I will tell you that there are a lot of doctors out there that think this disease is very rare and do not take our concerns serious, as an adult or for our children. I took my daughter to the doctor many many times with stomach aches, etc only to be told to increase her fruits and veggies! Turns out she has celiac!!! The other unfortunate thing is the blood test and biopsies are not 100% accurate that is why my daughter and I were tested thru Enterolab. If you did not want to go thru them for the testing then you could always start your daughter on the gluten free diet and she how she responds after at least a couple of weeks. If she is gluten sensitive then you will see a HUGE difference in her. A lot of people like to have it in writing from a doctor but this is a reliable test and is VERY accurate.

I hope your daughter finds some relief soon! Take care and keep us updated.

[mommida]

If the blood tests were elavated, they came back positive. I don't know how old your child is, but under 24 months is notorious for false negatives in Celiac testing.

Get a new ped. gastro. I think it was very irresponsible for the Dr. to say probably not Celiac - especially without an endoscopy w/ biopsy and elevated blood levels. Get in touch with the local Celiac support group for the name of a doctor with Celiac experience.

Do not start the gluten free diet until you are done with the testing!!

L.

[Fiddle-Faddle]

Here is another approach (not necessarily any better than the one above, just different): try the gluten-free diet and see if the diarrhea goes away. If it does, you can try reintroducing gluten in a month or so. If the diarrhea comes back, that certainly points to a problem with gluten.

Mommida is right in that the "gold standard" of diagnosis is the biopsy. But biopsies are NOT risk-free. Neither is constant diarrhea in a toddler. If there is a leaky gut thing going on, then that opens the door for all kinds of serious problems, especially if you are following the recommended vaccine schedule The flu shot and the chicken pox vaccine, for example, both contain mercury, which is a potentially disastrous combination with leaky gut. If your child has had any adverse reactions to vaccines (fevers, 3-hour-long screaming fits, or sleeping for 24 hours), you need to be extremely careful.

Do a lot of research before you make any decisions. We decided to spread the vaccines out. We are not anti-vaccine, but we discovered that there is no research supporting the safety of 26 vacccines by the age of 18 months. The pediaticans have (in general) not done ANY research on this; they are merely quoting the info they are given by the vaccine manufacturers.

If the diarrhea does not stop after an elimination diet, you can always add whatever you want back in.

The most important thing I have learned from this board is that you do not need a doctor's permission to take gluten out of your child's diet.

Good luck, and please keep us posted, okay?

[Guest nini]

my daughter's ped. gi also said it couldn't be celiac, that she had classic toddler's diarrhea and IBS... pffffffffffffffft. Despite the fact that I had been positively dx'ed with Celiac a few months earlier and that all of her symptoms were exactly the same as mine as an infant. (This according to my mom who went with us to the ped. gi.) however, I wasn't convinced that he was right because I had read about the genetic component, so I talked to her pediatrician about just trying the gluten-free diet. She agreed that we would give it a try, after just 3 weeks I had a totally different child and her pediatrician said that she is def. gluten intolerant and that we know it's celiac, we just can't prove it by conventional means. So, my daughter was dx'ed based on positive dietary response along with genetic predisposition. (me). The tests the ped. gi ran came back negative, but he also did not do the complete celiac panel. The testing is highly unreliable especially in children, it's just not sensitive enough. Therefore, if you do get a positive (even a low positive) you def. have it, where if you get a negative, it just means they couldn't detect it YET. I'd rely on positive dietary response long before I'd rely on just testing alone. In my case my bloodwork was highly positive, but it was my overwhelmingly positive dietary response that convinced me.

[eKatherine]

A lot of people who put their baby or toddler on a gluten-free diet find that their stools become normal within a few days. You won't have to wait for months to find out if the gluten-free diet works on a child that age.

[mythreesuns]

Well, I saw her blood work. Here are the 2 numbers I saw: IgG 35, IgA 5.

I believe that an IgG of 10 or above is positive.

I agree with everyone else; try the gluten-free diet and look for improvement. There is no harm in a gluten-free diet!

Keep in mind, however, that if your child is eating gluten-free, future tests will most likely show up negative because of the lack of gluten in the diet....which is a good thing!

[shayesmom]

A lot of people who put their baby or toddler on a gluten-free diet find that their stools become normal within a few days. You won't have to wait for months to find out if the gluten-free diet works on a child that age.

AMEN to that!!!

My dd completely changed overnight (seriously...24 hours later the changes were nothing short of miraculous). The diarrhea was gone in 3 days. Now the distended abdomen took a couple of months to go down....but overall, there was absolutely no question that dd had a severe gluten intolerance going on.

I have a real hard time comprehending why GIs are so slow to try the diet for a week or two. Especially in light of the fact that it takes an average of 9-11 YEARS to diagnose Celiac in the U.S., biopsies are extremely inaccurate and even notoriously high in false "negatives" and it takes longer to go through all the testing with NO answers than it does to do an elimination trial for a period of a couple of weeks....and have definite answers with positive response. If a child is having problems and they have no answers....what's the harm in giving the diet a shot? Most parents would be thrilled if they could provide their child with a happier and healthier life. As a parent of a gluten sensitive child, I don't care how much of a "pain" this diet is. The fact is, it works. I don't care as much about the diagnosis of the problem so much as the fact that dd is thriving and is obviously doing 100% better on diet. Our GI and pedi laid into me when I started the diet as they felt "restricting" foods from a child with FTT was assinine. I got some resounding apologies not long after that as I had them monitor dd's progress via weight checks every 2 weeks for 2 months straight. The pedi GI's response, "I've never seen a case of FTT turn around so quickly".

No joke? Perhaps it's because there comes a point in time when answers are needed instead of more questions.

It is okay if you try this out on your own. And if it makes the GI happier....tell her your intentions and tell her that you will keep a food diary for the duration of the diet so that she can objectively review what happens for her own records. There is no harm in trying the diet out. You have nothing to lose and everything to gain. Otherwise, it could take years to find answers and you may end up regretting not having taken action earlier in the game. I think that was my biggest fear in all of this. No positive Dx, but the "what ifs" were of monumental concern in regards to dd's health later on in life. The more I read up on it, the scarier staying on gluten became.

[wonkabar]

At the risk of sounding like a boob, is there really such a Dx of toddler diarrhea? That is the most assinine thing I've heard. A toddler shouldn't have diarrhea like that without some type of *real* problem.

I don't know a lot about the bloodwork, however I do understand it to be a postive result if the IgA is elevated regardless of the number. I use the pregnancy anaolgy a lot. None of us have been a little pregnant or told by our OB "let's just wait and see, shall we??!!".

Anyway, my son's labs came back negative however he had an amazing dietary response. He tested positive for one main Celiac gene and one gluten sensitivity gene. Surely I was out of my mind for thinking that gluten was a problem for him!! Who do I think I am, his mother??!! The blistering diaper rash and constant yucky poops cleared up in days and his behavior did a 180 in no time flat. The pediatric GI I took my son to told me he was "just fine" after I listed the litany of symptoms and issues he had. He also told me that the relationship between gluten and a change in his obnoxious behavior was "purely coincidental". I further asked him if it were possible that the changes that we saw behaviorally and physically were the result of his stomach starting to heal in the event it were related to food. He emphatically told me it was "highly unlikely"....all of this from a "highly respected" pediatric GI. Go figure. Not all MD's are idiots, but it does make you wonder where they get off sometimes, doesn't it? I'd NEVER put my son back on gluten for any reason what-so-ever. It's evil and does *bad* things to him!!

[chrissy]

the IgG and IgA of what? depending on what was tested and what the reference range of the lab is can make a big difference as to a diagnosis.