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Lindsay GFMom

Virtually Asymptomatic Child

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I'm very interested to know whether we're wasting our time and unnecessarily traumatizing our son with a blood test. Here's our story. I'd love to have feedback...

Our 4.5yo son was just dxed with both gluten & dairy intolerance per Enterolab. Also with both Celiac and gluten intolerant genes. But he currently has no symptoms other than dropping off in growth %. He has no gut issues that we're aware of other than very occasional mention of tummy ache. Stool is normal. No swollen tummy. He does, however, have anxiety issues (although these could be explained by several moves when he was young due to adoption.)

I don't know if it's related, but he went back on gluten 48 hrs. ago and has had one loose stool (not normal for him) and has had several bouts of crying/screaming. He also said his tummy hurt after dinner last night. I hate that we have to put him on gluten again just to get ready for the blood test.

We met with both our pediatrician and our naturopath. To no surprise, we got very different responses.

Ped said:

The fact that he was steadily at 75-90% on the growth chart til age 12 months (when, coincidentally, he would have started gluten) and then dropped to 15% doesn't necessarily indicate a problem. Kids "find their number" over time. He acknowledged that it "could" indicate something, but he didn't think so. He'd never heard of Enterolab and couldn't interpret the results. He suggested a blood test for Celiac and other allergies. I showed him the 5 part Celiac test from Prometheus Lab, which he'd not heard of (he'd heard of 3 or 4 of the parts, but not 5...he was very interested.) He agreed to ship a blood test to Prometheus where we'll have the 5 part screening for Celiac done along with other major allergens. When I reminded him how traumatic this could potentially be (to draw blood--we're not doing this twice!), he agreed that for best possible results we should put him back on gluten for 2 weeks since we've been gluten-free for 2.5 weeks. (I emailed & called Prometheus about this and got 2 different answers. One guy said we should currently be on gluten; the other said that 2.5 weeks off wouldn't hurt. I'm going with the conservative answer.)

Ped said that if this test comes back negative (which I anticipate it will as he doesn't have active symptoms of Celiac disease), he would put him back on gluten and disregard anything to do with his growth chart. That's not going to happen.

As a side note, I believe that he's grown in the last 3 weeks. We keep marks on his door; the marks have changed in a month. Of course this is hard to prove since it's been a short time and obviously he can't have grown tons, but it does look different. At the doc's office, his height was up to 25%....earlier it was 15%.

Naturopath said:

No problem with doing the blood test. More info is good. He agreed with me that irregardless of the blood test results that we need to try to keep him off gluten for a year and see if his growth rate changes. We'll keep him off dairy, too, but in a year we can test again and he may be able to tolerate it if his gut heals adequately.

IF his Celiac blood test is negative, in a year we'll discuss the possibility of using enzymes to allow him to occasionally (think "birthday party once a year" type thing) have a gluten indulgence. But we agreed that because he is currently gluten intolerant (showing gut damage) and because he has the Celiac gene, he really needs to be gluten free for life.

It was eye opening to me to see the Enterolab results of an adult on this site that almost matched our son's results exactly. (If anything, our son's results were slightly worse.) If my son continues to get gluten, eventually he could end up with very similar results. I guess I'm not willing to take that chance.

Enterolab responded to my question about whether their results indicate Celiac or not:

"The results do not indicate active Celiac Disease due to the fact that his fecal fat score was within normal range. If that score had been positive, your practitioner would have all the diagnostic evidence necessary to give a Celiac Diagnosis. Basically, his gluten sensitivity has not progressed to the point of full blown Celiac, but if you chose not to take him off gluten, this could happen. Digestive enzymes are helpful for some individuals, but sometimes they only help in the first 3 months or so of taking them. There are two different companies researching an enzyme specifically for gluten now, so perhaps we will see this helpful supplement in the near future. Dr. Fine does not recommend ever going back to a diet containing a food to which you have tested immunologically sensitive. This is because the level of severity can change and the symptoms can change the longer you are off of that food. You can even become asymptomatically sensitive, but you can still incur damage to the intestine even if you are not outwardly exhibiting symptoms."

*******

What this tell me is that the blood test for Celiac Disease is almost sure to come back negative. The pediatrician will declare all is well. The naturopath will agree with Dr. Fine at Enterolab. I do too, but it's harder to convince dh once he's heard the pediatrician! <_< We do agree (dh & I--not the ped!) that we must keep him off gluten for a year to see what happens with growth. After that I believe he must continue to remain off gluten. I cannot knowingly feed him something that could be long-term harmful.

I would be fascinated to know if anyone else has ever had a child dxed as gluten intolerant by Enterolab who didn't show any obvious gut symptoms. I don't know why anyone would chose to be tested if they didn't have symptoms, but there must be other people out there who are in the same boat as we are.

I hate the fact that we're putting him through a blood test that will likely turn out negative, but I'm consoling myself with the fact that it's probably a good idea to go ahead and do other allergy testing at the same time. And, if we don't blood test now, we probably won't ever be able to since it would mean going back on gluten for a long period of time.

Thoughts on what we're doing?

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I think I've already posted in one of your other posts, but just in case I'm mistaken: yup. I was asymptomatic (reasonably well adjusted socially, physically active, and a growth chart straight out of a medical textbook). And VERY positive on the blood tests. Enterolab wasn't around yet, so I don't know what my results would have been.

I know how hard it is to put your little one through all of those tests but maybe look at it this way - more information is always good, and celiac disease really isn't as scary as it looks right now (he could, for instance, have diabetes and need an injection every day. . .). And if you are seriously concerned about the blood test being a traumatic event, talk to your pediatrician about having a pediatric serologist draw the blood (your local children's hospital or pediatric ward probably has at least one on staff). . .this can make a huge difference to the trauma of the event. I've seen two year olds have blood drawn in this way without so much as a whimper.

And remember that you are his mom - you see him every day, all day. If you think something is wrong, it's probably worth checking out. . .and if you don't do it and he turns out to be celiac, you may regret it. Better a simple blood test now than discomfort and a biopsy later.

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"I don't know if it's related, but he went back on gluten 48 hrs. ago and has had one loose stool (not normal for him) and has had several bouts of crying/screaming. He also said his tummy hurt after dinner last night. I hate that we have to put him on gluten again just to get ready for the blood test."

What you did was essentially a gluten challenge, he reacted, he has a positive on the enterolab test. Personally I would not continue to give this child gluten. It was like my DD GI said after her endo, "she is showing celiac changes, she is not celiac yet. You could continue to let her eat gluten until she is clearly positive or you can take her off it now and insure it doesn't progress farther." We choose to take her off it. All emotional problems ceased along with fatigue and her bouts with GERD.

I was diagnosed by an elimination diet and gluten challenge because I never showed positive on blood tests. A second challenge required by my GI for the purpose of biopsy almost killed me. My GI then confirmed the diagnosis of the allergist, and apologized for misdiagnosing me for so many years, how nice of him.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Out of my 2 older dd's, I suspected that dd#1 would be positive, but dd#2 would be negative. DD#1 has alot of the symptoms, and dd#2 didn't. So when their blood tests came back and dd#1 was negative and dd#2 was positive, I was shocked. So yes, an asymptomatic child can definetly be positive. My dd#2 has looked and felt better since being gluten-free. And we can now definetly tell the difference when she accidentally gets glutened. She now gets diarrhea and a bad tummy ache. She rarely had that before.

IMO, you should keep your ds on the diet after the tests. Getting bloodwork done is VERY traumatic, but kids heal and forget pretty quickly. Just hold him tight and take him somewhere special after you are done!

ptkds


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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I just recently had my 4 year old son tested because his 6 year old brother has Celiac and was diagnosed at 4. It was very traumatic for him, he acted like we were trying to kill him, BUT, once we were in the car and he was dividing up all the stickers they gave him (one for him and his brother, and then he needed one for each of his cousins :rolleyes: ), he was fine. He never talked about it again and was happy to show off his band aid. My point being, the trauma is short lived, thank goodness.

Nicole

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Hi,

I appologise if I missed any vital info but as I


Diagnosed as an infant failing to thrive 40 years ago. Followed diet for 17 years more or less then quit. 20 odd years later after constant illnesses and reading this forum gone back to gluten-free with my tail between my legs.

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Our son's only symptom was failure to thrive -- no diarrhea, bloating, gas, pain, constipation, behavior issues, etc. He had been about 70% for height until he was about 3 1/2 or so. By the time he was 4 1/2 he was in the 25% for height. Our pedi was astute enough to order a celiac panel without any family history of celiac; she also checked growth hormone and other blood levels. All came back normal except the celiac panel. A subsequent biopsy confirmed celiac. He grew 2" in his first 6 months gluten free.

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I have an 11 year old daughter who tested positive from Enterolab and didn't have any GI symptoms. She was about 75% on the height chart, lower on the weight chart. She started off 99%+. I always wondered about her going down on the growth chart but she had terrible eating habits so I thought that was it. Of course, the doctors saw no reason for concern and I didn't think too much about it.

She is strictly gluten and casein free now and her personality has changed dramatically. She used to be an angry, irritable child. Now she is pleasant and easy-going, unless she has been glutened. She's also back up to at least 90% on the growth chart now for height. It's not a huge increase but I can't help but think it is related to her diet now.

She does have mild stomach issues sometimes now when she has gluten.

I think if he stays on the diet for a year, it will be clear that he needs to stay on it. My kids have been on it for about 9 months and even my husband thinks that they need to do it. He started out not wanting to believe Enterolab, too. It caused a lot of friction between us. Now, he's even tested himself and is trying the diet!

I didn't do the blood test for her because I thought it would give my husband an argument for not trying the diet. I think it would be a good idea to do it because, who knows, it might be positive and then you have a definite dx. Whatever the results, I think he should stay with the gluten-free diet.


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

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My DS had very vague symptoms, nothing that would have tipped docs off if I had not pretty much demanded that he be tested. He was occasionally constipated and had some behavior issues and was being evaluated for ADHD. He was in the 75th -95th percentile for his age, do dr didn't see anything wrong. Well, the dr was wrong. DS's bloodwork was VERY high and even the dr said he was shocked. Endoscopy w/biopsy confirmed Celiac.

So, he was pretty asymptomactic as far as the "classic" symptoms of Celiac go.

FWIW, I think that you have enough with Enterolab and his response to being gluten-free to keep him that way, even after the tests.


Kim

"Life isn't about how to survive the storm

but how to dance in the rain."

Positive bloodwork 1/9/06

gluten-free since 1/12/06

Very positive dietary response

DS (12 years old)

Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006

gluten-free since 7/15/2006

DD (almost 6)

HLA-DQ2 positive

Celiac Bloodwork negative 2 different times

Still eating gluten for now.

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My son was asymptomatic. We discovered the Celiac due to very, very low iron levels and the fact the liquid iron he was taking was not absorbing properly.

He tested positive by blood test and upper endoscopy. The rest of us in the family all had blood tests that came back negative.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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I'm probably going to have a very unpopular opinion on this board, but my advice to you is get the child blood tested. If they are negative you can always do whatever you like with his diet. As far as my children are concerned, I want to try every avenue to obtain a celiac diagnosis if possible because this is a very serious life-long disease and I feel as though they deserve to know if they have it or not. I realize that not everyone agrees with me and that's fine. I know where you're coming from. I too hated to blood test my children. My baby had blood tests at a year old and my 4 year old has had several starting at 2 years of age. She will continue to have more since she now has hypothyroid...

They recover after the blood test. It is traumatic in the moment and then they're fine. For me the advantages of knowing outweighed the disadvantage of them hating it. You'll have to decide that your yourself and your child. I just want you to know that once you keep him gluten free you can't go back and get those tests without a long gluten challenge. 2 weeks gluten free should not affect his test results. I really wish that we would have had further testing and a biopsy done on my now 4-year-old because we just went with the Enterolab results and now I regret that. We don't even know for sure if she has a problem wtih gluten or if it was just her thyroid all along... I don't completely trust in Enterolab because he has let yet another year go by without publishing when he has repeatedly stated that he will. Also, my son had negative tests through there yet reacts terribly to gluten. Also, I know of a child who had a negative fecal fat score through enterolab and HAS CELIAC DISEASE. His blood tests were positive. They were even positive after 4 months off gluten.

Sorry this has turned into a novel. I wish you luck in making your decision. I wouldn't put too much stock into Enterolab (and this is coming from someone who spent about $800 in testing for 2 kids through them).

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I would have to 100% agree with the previous poster. As for the Enterolab's fecal fat score. My son's was negative and his tTG was negative. In the blood test, he tested positive for Celiac. I wouldn't rely 100% on Enterolab for accurate testing. I would get a second opinion. Also, my husbands brother died at age 33 of Non-Hodgkins t-cell lymphoma. We are now linking all this together. This is the most well-known associated form of cancer that goes along with Celiac. My husband's brother had NO symptoms. They thought he had ulcers, a few weeks later he was diagnosed with cancer, and six weeks later he left his wife, 2 year old son, and eight year old daughter behind. He died. We only found the Celiac link through my son. This disease is life long and the complications can be very serious. I truly believe you need to TRY to get all the answers you can and you are your child's advocate. You have to remember that some day your child will be an adult and not in your control. I would 100% go for the accurate diagnosis. If my husband's brother would have known, his life could have possibly been spared. Do a google search on Non-Hodgkin's lymphoma and Celiac if you would like to have more information. As a parent, I wondered every day if it really was Celiac and having the blood test was the absolute BEST thing I did. It's a minute of pain for a lifetime worth of answers. Now my son will be biopsied in two weeks and we will know if it is confirmed Celiac. Good luck.

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i derfinitely agree with rez and e&j0304, i would go for proper medical testing, you can do whatever you want with your child's diet after that------the fact that enterolab says that a positive fecal fat score would indicate a positive diagnosis of celiac should set off bells indicating their inaccuracy------fat malabsorption is NOT diagnostic for celiac disease and it is VERY important to know the cause of malabsorption since different causes require different treatments------a fact that enterolab either doesn't realize, or is failing to mention.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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Thank you SO MUCH to everyone who responded to my questions. It's very helpful to know that others have also had asymptomatic kids who turned out to test blood +.

Next week he goes in for the blood test. The interesting thing is that it's been very obvious that we have a gluten problem based on his behavior when we went back to a gluten diet in prep for the test. I'll be very happy to get him back off of it next week.

We have decided to test as this is our opportunity. If we ever want to know, now it the time. I don't anticipate putting him on gluten again and certainly don't want to have to do 6 months of it for an accurate test. I'm just hoping that this test will tell us what we need to know so that our ped will take us seriously. If nothing else, I'm prepared to just do it and ignore the ped.

Again, thanks so much for your stories. They were VERY helpful.

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I'm so glad that you are getting the blood test. My goal is to help others to not have to go through what we did. Sadly, my husband's father passed away this past week and we had several family members staying with us. We found out my husband's first cousin's two sons have Celiac. The mystery is being solved.

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I just had my 11 month old son tested via blood test - and I was so worried about it that I was sick all night before. We went to a branch of our Children's Hospital and they were excellent! He didn't even cry. He was fascinated with the nurse and just sat and watched her. She says most young ones react that way - they don't have a lot of fear yet. His results came back negative (he is small, but asymptomatic - we were testing him b/c I found out I have Celiac). We will test him again if he shows any symptoms or in 2 years - whichever comes first...

But hopefully your son will have no trouble - try and find someone who is used to dealing with kids for this type of situation - it makes all of the difference!


Tritty (my childhood nickname....)

Age 31, Mommy of 3

Blood test positive for celiac 1/16/07

gluten-free since 1/16/07

Endoscopy 2/13/07 - small hiatal hernia, scalloped mucosa in 1st and 2nd part of duodenum, some erosion of the esophogus.

Two oldest kids - fine so far :)

My 17 mo old has eosinophilic esophogitis. Only showing milk allergy? So completely off dairy for time being to see if that is trigger...

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I'm probably going to have a very unpopular opinion on this board, but my advice to you is get the child blood tested.

Than I guess that makes two of us.... lucky for me I'm already intensely disliked by some so what the heck...

If they are negative you can always do whatever you like with his diet. As far as my children are concerned, I want to try every avenue to obtain a celiac diagnosis if possible because this is a very serious life-long disease and I feel as though they deserve to know if they have it or not. I realize that not everyone agrees with me and that's fine. I know where you're coming from. I too hated to blood test my children. My baby had blood tests at a year old and my 4 year old has had several starting at 2 years of age. She will continue to have more since she now has hypothyroid...
Well I'd still say they need restesting as they get older if negative but by then it shouldn't be such an issue....

They recover after the blood test. It is traumatic in the moment and then they're fine. For me the advantages of knowing outweighed the disadvantage of them hating it.

Whilst being unpopular I'll be perfectly frank.... An 11 month old has no idea what needles are blood tests are...

Blood tests do not hurt, they are very slightly uncomfortable .... an instant ... and dare I say its a pinprick.

The largest needle I ever had was a tetanus in my bum... It looked like a darning needle but on a scale of pain from zero to migrane it barely registered 1-2. The problem is we are scared of needles because we are told to be scared of needles.

Compared to what is literally a pin prick of discomfort even I days gut ache or D is much worse...

You'll have to decide that your yourself and your child. I just want you to know that once you keep him gluten free you can't go back and get those tests without a long gluten challenge.

Very true so take the opportunity.... I cannot see any circumstance where a pin-prick should be any reason not to be tested...


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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He does, however, have anxiety issues (although these could be explained by several moves when he was young due to adoption.)

I'm not trying to be nosy, but do I understand you to say that he is adopted? From the US or internationally? I only ask because my youngest son is adopted from Russia and I've run across several families with Celiac children who have been adopted from Russia. My son had a celiac panel done and it was negative, but I still wonder about him.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Good for you!! I'm so happy to hear that you're taking him in for tests. You are doing the right thing and I don't think you'll regret it. No matter the outcome, you will have done it and a year from now you won't have to look back and wonder what the results would have been.

gfp: I'm glad to hear there are a few of us who think along the same lines. :-)

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I'm not trying to be nosy, but do I understand you to say that he is adopted? From the US or internationally? I only ask because my youngest son is adopted from Russia and I've run across several families with Celiac children who have been adopted from Russia. My son had a celiac panel done and it was negative, but I still wonder about him.

Ironically, my son was born in South Korea. I've heard that it's unusual for people of Asian descent to have the Celiac gene. Don't know if that's true. I wish I knew more. I guess it seems like statistics on Asians and Celiac gene may be iffy...if you rarely eat gluten, your chance of developing full-blown Celiac would be less, so even if you have the gene you may not develop Celiac disease...or ever get tested to reveal that it's more prevalent in one ethnic group than most people think.

If anyone knows anything about the prevalence of the Celiac gene in people of Asian descent, I'm all ears!

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i've thought about this whole "testing is traumatic" thing for a numer of years. gfp is right-----a blood test really is not very painful. i assume that people think it is traumatic because the child starts screaming hysterically. well, i've had my children scream hysterically when i have changed diapers, given baths, washed hair, taken away a dangerous object, etc., etc. i don't think that anyone would not do those things because they were "too traumatic". however, i have been known to skip giving a child a bath or a hair washing because it was too traumatic-----but it was ME that didn't feel like getting traumatized!!!!!


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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i've thought about this whole "testing is traumatic" thing for a numer of years. gfp is right-----a blood test really is not very painful. i assume that people think it is traumatic because the child starts screaming hysterically. well, i've had my children scream hysterically when i have changed diapers, given baths, washed hair, taken away a dangerous object, etc., etc. i don't think that anyone would not do those things because they were "too traumatic". however, i have been known to skip giving a child a bath or a hair washing because it was too traumatic-----but it was ME that didn't feel like getting traumatized!!!!!

So true!!

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I love the rationale!!! Being a parent isn't always fun and easy, it's about doing what's right for your child! :)

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I just joined this site today as my 2 1/2 year old was diagnosed Jan. 2007. We were very blessed as the day we brought her into our pediatricians office with the stomach problems she was having for the last few months they immediately thought it was celiac. We met that same afternoon with a pediatric gastroentologist who had her blood drawn that day for a celiac panel. It came back positive in one week and one week later confirmed with an endoscopy. So not to get into my story, but I wonder if you have seen a pediatric gastroentologist. Ours is top notch affiliated with a children's hospital and said you either have celiac or you don't and there are definitive tests to confirm it. I know you don't want to put your child through anything tramatic, but it should be a blood test and if you test for the correct antibodies you will have your answer. As far as feeding him gluten. Our dr. said you should only have to do a few crackers a day for the test to come back positive. He may be uncomfortable for a week or two, but when I hear stories about people going years without a positive diagnosis, maybe you can think of a few weeks as a trade off to years of being sick. I guess I just wanted to answer you b/c you seem to be getting so many different answers and if you go to a specialist who is an expert in celiac maybe you will find the right path to making your little boy well. Hope this helps....

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