"offical" Results On My Son...

[VydorScope]

(some refresher+newstuff) I have a 21 month old toddler who showed remarkable improvement on the gluten-free diet. Before the diet he had an endoscopy that showed "damage consistent with a reaction to food in the stomach" but nothing in the intestins. After the endoscopy he spent a week on a gluten-free diet, and then got blood tested. Blood test was an after thought, only done because he did so well on the gluten-free diet. They did the full panel of blood tests, and only 1 of the set came back postive. The doctor siad it was the least "specific" one. He siad he is not comforotable calliing it celiac disease because more of the blood test did not come back postive. He wants us to stick with the gluten-free diet for 6-9 months the re-do the blood tests and see if his "levels" go down. To me the doctor seemed realy skittish about calling it celiac disease, though he could not give me any other reason for the success fo the gluten-free diet.

Based on that, am I silly for just saying thats a postive result for celiac disease and getting on with the rest of his life ? I hate these never ending tests!

[MySuicidalTurtle]

Bloodtests can be tricky and show false negitives.

If your son is doing well on the glutenfree diet then I would stick with it!

I was diagnosed with Celiacs and then my brother but my mother could never get a positive result. She clearly has the diesease. So, she went on the diet and it made her better.

You know what is working for your son and that is being glutenfree.

[ryebaby0]

I'm no doctor, but anybody here can tell you that if your son's bloodwork was negative to begin with, after 6-9 months on a gluten-free diet it will still be negative. Even very sensitive celiacs will eventually read negative on a gluten-free diet; it's important NOT to be gluten-free if you want an accurate test. Often negative results are just labelled as "negative" or "outside range" and there is no level to read, as opposed to a positive result, which will typically have a numerical value. If his (for example) tTg was 150 to start with, and after 6 months it was 20, that would tell you something, but I don't see what your doctor expects to happen if the results are already negative.

It's hard to imagine a whole panel of false negative results in a celiac. If the full panel is negative, as much as you might want an answer and a name, maybe he doesn't have celiac disease. Or is gluten-sensitive, but not celiac. Blood tests in children under 2 can be unreliable.

If it were me -- and it's not ---- I'd be inclined to keep him gluten-free 12 -18 months and then do a gluten challenge, and if he reacts to THAT, I'd go off the gluten-free diet long enough to get a good, glutenated set of blood tests when he's older. Some people want a medical result to rely on. Some people don't. There's no "right" answer

Joanna

[VydorScope]

  Quote

If his (for example) tTg was 150 to start with, and after 6 months it was 20, that would tell you something, but I don't see what your doctor expects to happen if the results are already negative.

Three things,

First, not all the results were neagtive, one fo the tests was postive.

Second, what you describe is exactly what the doc wants to do.

Thrid... whats a gluten challange?

[celiac3270]

A gluten challenge is when you go back on gluten (after being gluten-free for awhile) to see if it causes symptoms again... it's not as common anymore, and I don't recommend it.

[Carriefaith]

I would say that your son is definately showing signs of wheat or gluten intolerance. It is also possible he is showing early signs of celiac disease and the damage hasn't occured yet in the intestines. However, I'm not a doctor.

[Guest nini]

I DID NOT and WILL NOT put my daughter through any more testing. Her blood work was inconclusive, but her response to the gluten-free diet has been miraculous to say the least. All I need to know is that my daughter can not ever have gluten. She reacts violently if she does get exposed, both externally and internally. She was 3 went we went through the testing, and even at that age the tests are inaccurate for children. There currently is not a blood test offered (IMHO) that is accurate when children and celiac disease are involved. Her Dr. agreed with me that the best test result was how she responded to the diet.

You have seen miraculous improvements in your son, IMHO that is good enough to keep him off gluten forever. No more testing. Why put him and you through that misery??? Just my opinion.

[gf4life]

All three of my kids tested positive on the IgG test also, and negative on the others. Unlike a lot of labs our results actually DID show a number on the negative tests. So we could monitor if those negative levels drop to at or near zero...if we want to. For me it doesn't matter if they do anymore tests or not. I know they are gluten intolerant and need to stay gluten-free, period. Both the doctor and I felt it best to opt out of the biopsy for them, since their Enterolab tests showed that they had no malabsorbtion, so likely the intestinal damage was minimal. So the doctor won't say they are Celiac, but he is supportive of their being on the gluten-free diet and is monitoring their progress. He is very happy with the results of the diet over the past 15 months, but not as happy as I am! I like having healthy kids, even if it means I have to spend the rest of my life in the kitchen, reading labels and explaining our food issues to everyone involved in serving us food outside of our home! It is so worth it.

God bless,

Mariann

[Guest nini]

I have to add that with my daughter, the incompetent GI doc ordered THE WRONG TESTS... her ped told me that they only did a simple screening, not the full panel like she requested. The blood draw itself was so horrific for my daughter that we opted for no more blood tests since she was doing so well on the diet.

[gf4life]

My horror story is that they did the first tests through Quest (who isn't very reliable with the Celiac panel) and when we got to the pedi. GI he wanted them retested with Prometheus. It was hard getting the blood the first time out of my 4 & 9 year olds. My 7 year old was easy (other health issues have required lots of blood draws and he's a pro!), but with him they suspected he also might have an IBD and took 5 tubes total to run extra tests. After putting the kids through the second blood draw (it was like torture) it ended up that the insurance refused to pay for Prometheus, so the clinic at the children's hopsital sent it to Quest again (without telling the doctor!) and we ended up with the same inconclusive results and no IBD screening! My 7 year old was not happy that they had taken 5 tubes of blood for no reason... The doctor was not happy, and I was furious. That is why I opted for Enterolab. No more blood draws and cheaper than paying for Prometheus out of pocket...

We also opted out of the biopsy, since even the doctor doesn't like to put the kids through it unless absolutely necessary. Only my oldest has had an endoscopic exam and that was a few weeks ago because of another health issue that has popped up since going gluten-free. The doctor went ahead and got samples in the intestines while he was in there to check and make sure everything was okay, since he has been gluten-free for over a year. It won't diagnose him as Celiac, but it should be clean and healthy after a year, and show compliance with the diet.

God bless,

Mariann

[Guest nini]

Quest, yeah, that's the lab that did my daughter's test. Hmmmmm

[VydorScope]

Thanks all, sounds like for the most part everyone here agrees, go gluten-free with him and stick with it. I do not see a blood test as a big deal though, so prbly let the GI Doc do that again in 6-9months, but definly not doing another Endscopy unless somthing dramticaly changes.

I do not lke the idea of a gluten challenge.

[gf4life]

  Quote

I do not like the idea of a gluten challenge.

I did one on myself, when my GI *finally* consented to the biopsy. It was horrible and my sysmptoms were worse than they had ever been. I would not put a child through that. I was an adult and knew the consequences, a child doesn't have a choice. They eat what the parents feed them. I just can't imagine putting any of my children back on gluten for more testing. I can't believe it used to be standard for the diagnosis!

God bless,

Mariann

[ryebaby0]

Oh my! Just to clarify (because re-reading, I sound like a monster!) I also would never subject any possible celiac to a "classic" gluten challenge --- the 6-8 weeks of eating wheat and then bloodtesting. Medieval.I was thinking thatif you wanted to avoid a doctor insisting on bloodwork and a scope, but wanted to "convince" the doctor that the celiac dx is correct, you could stay gluten-free for a year or so, and then eat (for example) a piece of bread or something. In my husband, that was all it took to convince him that his iffy bloodwork was the tip of the iceberg. We do lots of ongoing allergy testing in my sons, and our "challenges" have been very controlled re-introductions.

In the end, it always comes down to "do you feel better this way"? I don't need a doctor to tell me I can't have milk, etc.....but I was just being sensitive to the people out there who truly do have reasons for needing a doctor to be completely on board with the diagnosis.

I think I'm raving now....sighhh...

joanna

[connole1056]

When you talk about Quest, are you referring to Quest Diagnostics?

It really amazes me that people cannot decide for themselves what lab they want to go to, especially if the lab that is allowed by insurance seems to make alot of mistakes. I guess I'm lucky in that respect because I can go to any doctor, lab, etc. But that is not celiac disease related so it is not appropriate here.

[VydorScope]

  ryebaby0 said:

Oh my! Just to clarify (because re-reading, I sound like a monster!) I also would never subject any possible celiac to a "classic" gluten challenge --- the 6-8 weeks of eating wheat and then bloodtesting. Medieval.I was thinking thatif you wanted to avoid a doctor insisting on bloodwork and a scope, but wanted to "convince" the doctor that the celiac dx is correct, you could stay gluten-free for a year or so, and then eat (for example) a piece of bread or something. In my husband, that was all it took to convince him that his iffy bloodwork was the tip of the iceberg. We do lots of ongoing allergy testing in my sons, and our "challenges" have been very controlled re-introductions.

In the end, it always comes down to "do you feel better this way"? I don't need a doctor to tell me I can't have milk, etc.....but I was just being sensitive to the people out there who truly do have reasons for needing a doctor to be completely on board with the diagnosis.

I think I'm raving now....sighhh...

joanna

Still, if we were talking about ME I migth try that, but we are talking about a toddler (21 month old child) who in 6-9 months will still only be a 2 year old. Get his blood re-tested at that point I might do, but he will get no gluten unless I have darn good reason to suspect the celiac disease dx is wrong.

For my self I have a sliughtly different plan. I plan to go gluten-free for 6 months, and stop my iron pills along the way. If my anemia clears up I am going to call that diagonistic enough. Anemai is an obejctive test, so my "feel betternes" wont impact that.

[mommida]

I wish I had refused trying to keep my daughter on gluten for the tests. She didn't make it long enough through the gluten eating before she was hospitalized for dehydration. Don't risk the health of your child any more for tests that aren't that accurate (age of your child).

As for a gluten challenge, I'm sure that some type of accidental gluten ingestion will happen at some point.

Laura

[gf4life]

  Quote

When you talk about Quest, are you referring to Quest Diagnostics?

Yes, I was talking about Quest Diagnositics. My insurance (Blue Shield HMO) would not cover any tests done at another lab, that they could get done cheaper at Quest, regardless of whether Quest does a bad job on certains tests and the other lab is more reliable. We can't even go to the lab at the children's hospital. We have to take our lab orders to Quest for everything.

God bless,

Mariann

[connole1056]

I know this is not the forum, but that totally sounded like an HMO! So basically, its okay to use the hospital, but not all its facilities? As for Quest Diagnostics, it could be work overload or a simple mistake but whatever it is, it is wrong! The insurance company does not reimburse even a percentage if you go out of network? No wonder so many people have written about not wanting to go for so many tests! I have passed the lovely trait of very small veins onto my two girls yet we havethe tech use butterfly needles he is having a hard time getting the vein. And sometimes it seems like torture, like when my 6 month old screamed for an hour when the lab didn't have the butterflies, but once it's over it's over. So I now understand what the rest of the story is. I really had a hard time understanding why blood tests were such a problem for some people. Thank you.

[connole1056]

Oh, ryebaby0 you did not sound like a monster!!!!!