To Challenge .... Or Not To Challenge?

[w919oct]

Looking for input from parents who've "been there."

Four years ago, my son came down with what I thought was a virus that resulted in a 6 lb weight loss over only two weeks time. Because of the urgency of the situation, I wasn't willing to wait for the test results to come back before taking action and quickly reacted on our pediatrician's suspicion that my 4 year old son was suffering from Celiac Disease by immediately initiating a gluten free diet. The results were immediate and dramatic, and not only for those symptoms he was suffering at the time, but for the many gastrointestinal and neurological symptoms he suffered from since birth. The blood test results came back negative, however, by that point no doctor could convince me to resume a gluten free diet despite what any test results said. I even refused to challenge him for his follow-up endoscopy 3 months later, so of course the test did not confirm Celiac Disease. However, by that time I did not care, because my son was finally healthy, happy, rash-free, and growing at a rapid pace for the first time in his life.

It is four years later and my son is now 8 years old, and for reasons too lengthy to explain here, we thought it might be important at this stage in his life to confirm a diagnoses. I brought my son to the Celiac Research Center in Baltimore, where they conducted genetic testing which came back negative. Believing that was conclusive that my son only had a gluten intolerance rather than full-blown Celiac, I initiated a 3 day gluten challenge before his appointment so the doctor could evaluate his symptoms first-hand and discuss other diseases he could have that respond favorably to a gluten free diet. This turned out to be a very bad decision on my part, as he developed a fever, eczema, diarrhea, ataxia, and joint pain after only two slices of pizza over two days. The doctor immediately confirmed gluten intolerance based on a physical examination alone, and stated that son might either have Crohn's Disease (which does respond favorably to a gluten free diet) or be one of only a very few who has a form of Celiac that isn't linked to a genetic factor. In any case, the gastro specialist recommended doing a 3 month gluten challenge followed by a colonoscopy (to evaluate for Crohns) and another endoscopy (to conclusively rule out Celiac once and for all).

My pediatrician strongly disagrees with this recommendation, believing if it is Crohns it will appear on its own someday without the aid of gluten, and that first and foremost our goal should be to keep him in remission as long as possible, especially because he is still underweight and small for his age.

My son's gluten intolerance is obviously much more severe than the norm, so I'm really at a loss which way I should go with this. Is the diagnoses really that important?

I welcome any and all opinions about the matter. MUCH THANKS!

[eatmeat4good]

Oh Wow...you have really been through it.

And so has your son.

My son was sick all his life too.

We didn't figure it out until he was 16.

He opted not to test...no way we were waiting even a day to go gluten free what with all the problems he had. If there was a chance to fix it with gluten free eating we were going for it. It solved his ataxia, depression, anxiety, muscle weakness, fatigue, asthma, and skin rashes.

He has no desire to get tested and I totally support that decision given how much of his life he has already lost to gluten. He is wrestling this year and it is the first time he has really been able to participate in sports. He runs with ease...and walks with grace and feels totally well.

I'm not sure what testing will tell you other than he needs to eat gluten free, which you already thoroughly know. If there were a benefit to making him ill for that long in order to test I might be for it...but there doesn't seem to be any benefit...either way you will feed him a gluten free diet..so I would spare him the agony of that long gluten challenge. It is such a relief to see your child get well. And you felt that you made a mistake by feeding him pizza for two days..given his strong reaction. The only reason to test that I could fathom would be if your child refused to eat gluten free when he was older. But I cannot even see that being a possibility given how sick he becomes.

Trust your Dr. the one who supports him staying gluten free. Of course it is your choice, but as a mom who watched the gluten poisoning of my son for far too long, wondering what the heck was wrong with him and getting no answers from Dr.'s...we are totally ok with eating gluten free without testing...it is such a dramatic and miraculous change that neither of us want to lose a single day of our lives to gluten poisoning just to please a Dr.'s chart.

Sometimes Dr.'s recommend he be tested officially...but the only real reason they can ever present after thorough discussion is because the diet is "so restrictive that "we" wouldn't want to impose that on him without confirmation." Well, we have confirmation Dr....every time we get cross contamination...we have confirmation. I might feel differently if there were another medical reason to test...but this is the only reason they ever give. Good luck with your decision...I just wanted to register an opinion....I'm sure there will be others.

[Darn210]

I don't think I would do it. The only reason that I can think of to do it is to have a doctor's note backing you up if you have issues at school (My daughter's school eliminated all (gluten)snacking in her class room because her doctor wrote a note. It would not have happened otherwise.) Depending on a college's requirements (I know that's a long time from now), if you've got something from a doctor, a student can opt out of a required meal plan or may be eligble for alternative housing. If your pediatrician is backing you up that your son needs to stay off of gluten, then I think your bases are covered.

If his reaction was that severe with two pieces of pizza, I don't think I would be able to do it. It's one thing to take on that kind of challenge when it's your own body. It's something else when it's someone else and that someone else is a child.

[weluvgators]

I just wanted to share that we are a family that is "too risky" to challenge. It sounds like you may have a doctor(s) that would agree with that for your child as well. For consolation, I was assured by a world leading expert that by keeping our kids gluten free so early in life that we may achieve a "prevention" of sorts for a celiac diagnosis in the event that a vaccine is eventually developed. Your genetics are not as clear cut as ours, but it is our less genetically susceptible child that is deemed "absolutely too risky" for gluten challenge outside of a hospital setting. Ataxia and joint pain are her leading symptoms from exposure and the neurological and other systemic issues (who knows what exactly, but it has also presented as anaphylactic in nature) are enough that MANY doctors have instructed us to NOT do a gluten challenge . . . unless in a hospital setting . . . and who wants to hospitalize a healthy child to challenge gluten? Fortunately, none of our doctors have suggested that approach for now.

When beginning school is a typical time to consider a gluten challenge for children who have not yet had a definitive diagnosis, but it seems that you have a definitive diagnosis of gluten intolerance for now. I plan to let my children get through these critical and formative years without gluten and hope/pray for the best for the future. Living gluten free is their preference, so that helps tremendously (the complications of not living gluten free are understood by them - they have had horrid complications as unusually sensitive to gluten kids). Since one of our children had extensive, permanent damage to primary tooth development from gluten exposure through breastmilk and a handful of trials that failed, I want to ensure that their tooth development is in the best state possible for them - living gluten free seems to be producing fantastic results on that front for us so far!! It has been a tremendous improvement over the tooth development that occured before understanding our gluten issues. I feel the same way about neurological development, as our oldest that does not have the more "classic" celiac issues has had extensive neurological complications/delay - these are the formative neurological pathway building years, and I want to give her the best chance for healthy development of her neurological system . . . I am still trying to sort out / understand the extensive/crippling joint issues that also occur for her with gluten exposure - but not living with chronic pain management during her childhood is another motivating factor in maintaining our diet protocols (we also have extensive eczema/dermatitis issues that developed upon the start of school when our children were exposed to gluten filled environments for the first time since adopting a gluten free lifestyle - they now eat outside of the cafeteria and maintain strictly gluten free classrooms to help prevent chronic skin issues from environmental exposures).

We have achieved all of the medical documentation needed to keep our children safe at school due to their gluten intolerance. It sounds like you are well on your way to building a medical team to help you sort through the necessary measures needed to keep your child safe. It sounds like you have a fantastic, thoughtful and proactive pediatrician, and that is fantastic! Our pediatrician is the person that has completed our necessary paperwork for school, and that is all that you should need for a "diagnosis" for now. Our pediatric gastro was concerned about the "diagnosis" issue in case our child wanted to "join the military" . . . but our child was 6, this is a very complicated issue, and trying to achieve an "official celiac" diagnosis at that time was not recommended due to her complicating issues (she has an epi for wheat/gluten exposure) . . . and that was before her complicated hospitalizations. The hospitalizations (for crippling, idiopathic joint problems that may have been autoimmune in nature following unusual for her amounts of incidental gluten exposure) only confirmed that we cannot take our chances right now with any sort of gluten challenge.

Best of luck figuring this out. Our family certainly appreciates the complications of navigating life with gluten super sensitive kids, so please know that you are not alone!!

[frieze]

Looking for input from parents who've "been there."

Four years ago, my son came down with what I thought was a virus that resulted in a 6 lb weight loss over only two weeks time. Because of the urgency of the situation, I wasn't willing to wait for the test results to come back before taking action and quickly reacted on our pediatrician's suspicion that my 4 year old son was suffering from Celiac Disease by immediately initiating a gluten free diet. The results were immediate and dramatic, and not only for those symptoms he was suffering at the time, but for the many gastrointestinal and neurological symptoms he suffered from since birth. The blood test results came back negative, however, by that point no doctor could convince me to resume a gluten free diet despite what any test results said. I even refused to challenge him for his follow-up endoscopy 3 months later, so of course the test did not confirm Celiac Disease. However, by that time I did not care, because my son was finally healthy, happy, rash-free, and growing at a rapid pace for the first time in his life.

It is four years later and my son is now 8 years old, and for reasons too lengthy to explain here, we thought it might be important at this stage in his life to confirm a diagnoses. I brought my son to the Celiac Research Center in Baltimore, where they conducted genetic testing which came back negative. Believing that was conclusive that my son only had a gluten intolerance rather than full-blown Celiac, I initiated a 3 day gluten challenge before his appointment so the doctor could evaluate his symptoms first-hand and discuss other diseases he could have that respond favorably to a gluten free diet. This turned out to be a very bad decision on my part, as he developed a fever, eczema, diarrhea, ataxia, and joint pain after only two slices of pizza over two days. The doctor immediately confirmed gluten intolerance based on a physical examination alone, and stated that son might either have Crohn's Disease (which does respond favorably to a gluten free diet) or be one of only a very few who has a form of Celiac that isn't linked to a genetic factor. In any case, the gastro specialist recommended doing a 3 month gluten challenge followed by a colonoscopy (to evaluate for Crohns) and another endoscopy (to conclusively rule out Celiac once and for all).

My pediatrician strongly disagrees with this recommendation, believing if it is Crohns it will appear on its own someday without the aid of gluten, and that first and foremost our goal should be to keep him in remission as long as possible, especially because he is still underweight and small for his age.

My son's gluten intolerance is obviously much more severe than the norm, so I'm really at a loss which way I should go with this. Is the diagnoses really that important?

I welcome any and all opinions about the matter. MUCH THANKS!

I would not challenge, if i wanted him to remain alive....

[shadowicewolf]

Wow, they should just Dx him alone based on his symptoms.

The only other thing that i can think of that would benifit from a DX would be something for his school. Has this been an issue before?

[w919oct]

I just got home from work and am teary-eyed from reading through all of your responses. Sometimes it is just such a relief to hear that other parents have struggled through the same heart wrenching decision as we are facing. Bless you all for sharing your stories.

Yes, my pediatrician is amazing, and the three gastros we've visited all comment how impressed they are that she was so quickly able to link his seemingly nondescript symptoms to gluten intolerance. I do think one of the reasons the specialists seem to push us in the testing direction is because they themselves are intrigued by the severity of his symptoms, all of which disappear when he remains gluten free.

Again, much thanks for leading me to the right decision!

[beebs]

I do think one of the reasons the specialists seem to push us in the testing direction is because they themselves are intrigued by the severity of his symptoms, all of which disappear when he remains gluten free.

This sounds familiar to me - I have life threatening issues with gluten and my gastro wants me to do a challenge - my GP is dead against it and says that a diagnosis is not worth dying for! I know that its to satisfy my GI's curiosity about it. Nice to know right??

I've currently got two kids gluten free who haven't got official diagnosis. Crohns has been mentioned for them as well and my younger one who is two has been tested for cystic fibrosis as well. If they reacted that severly to gluten I don't think I would put them back on it. But I do understand how frustrating it is not having a diagnosis - and I also feel people don't take it seriously enough...arrrghhh!

Good luck in your decision!

[Twinklestars]

I'm also a mother and I would not put my child through a gluten challenge if they exhibited symptoms like your sons. No way. I have an 8 year old daughter and I'll be getting her tested soon. She isn't as sick as your son though and at least I know enough about celiac now from my own experience not to take her off gluten until she's done with testing. But she'd be off it in a second if we were in your situation.

You are absolutely doing the right thing by listening to your paed. He sounds very switched on and cares for your son's welfare. The GI doctor sounds like he wants to use your son as a science experiment! That is so wrong.

Would your paed just diagnose him based on his reactions to gluten? Or at least write a comprehensive letter that you can use to advise your son's school of his condition?

I think that by having your son on a gluten-free diet now he won't ever know any different. He'll be so used to it and won't have to adjust as an adult. Also, when he's older if he wants to put himself through a gluten challenge to obtain a diagnosis, then that's his decision for him to make as an adult when he's responsible for his own health.

You are doing a terrific job and your son is so lucky you have this figured out now xxx

[w919oct]

This sounds familiar to me - I have life threatening issues with gluten and my gastro wants me to do a challenge - my GP is dead against it and says that a diagnosis is not worth dying for! I know that its to satisfy my GI's curiosity about it. Nice to know right??

I've currently got two kids gluten free who haven't got official diagnosis. Crohns has been mentioned for them as well and my younger one who is two has been tested for cystic fibrosis as well. If they reacted that severly to gluten I don't think I would put them back on it. But I do understand how frustrating it is not having a diagnosis - and I also feel people don't take it seriously enough...arrrghhh!

Good luck in your decision!

OMG we must have the same doctor!!! I've been down the same path as you with the potential Cystic Fibrosis and Crohns. In fact, his Cystic Fibrosis test was almost borderline positive, but he has no issues with congestion so they concluded the issue was with the test results.

Interesting to note to all -- I did ask two of the gastros we saw if we were possibly looking at a potential "disease to be named later" (meaning a variant form of gluten intolerance that does not affect villi but causes other severe neurological and autoimmune reactions to gluten). Both said that was very possible because there is still so much we don't know about gluten intolerance. This last gastro at the Research Center said they do not even have evidence that this particular form of gluten intolerance is any less dangerous than traditional Celiac disease. Two of the gastros we saw did believe a colonoscopy would probably be more informative in our case than an endoscopy. Now that he's 8, I really have no issues with the colonoscopy (wasn't willing to do it when he was 4), but I do object to making him sick before he gets it (which both gastros wanted us to do). If I found a gastro that would do it without the challenge, I'd probably go ahead with it.

One of you asked if it has been a problem at school. Because of my son's slow motor skill development (which was attributed to the gluten intolerance), we decided to enroll him in a private school, and quite honestly that was the best decision we ever made. He had individualized attention, a small class, and caring class moms who have even called me at work while chaperoning field trips to verify which snacks they could and could not purchase for my son. For the record, he is now 8 and and advanced academically,plays sports, is no longer anemic, and is actually in the 50% now for growth (he was like 15% previously).

However, my big pet peeve (and forgive me if I offend anyone here) are the peanut allergy moms who tell me I'm "lucky" because at least his food intolerance is not life threatening. Forgive me, but I myself have never heard of a child who has complained because they cannot eat peanuts, shellfish or soy. Many of these moms simply cannot appreciate what it is like for a child to be deprived of cupcakes, pizza, and bread, and know its going to be that way for the rest of his/her life.

[beebs]

OMG we must have the same doctor!!! I've been down the same path as you with the potential Cystic Fibrosis and Crohns. In fact, his Cystic Fibrosis test was almost borderline positive, but he has no issues with congestion so they concluded the issue was with the test results.

My little one ended up being negative for CF too- but he is gluten-free since Jan and still has completely undigested meals in his stettorhea stools, oily, mucous - ugh! He is a twin and his brother is grown at a healthy weight and he is just getting further and further behind in every way. Height, weight, speech development, he bruises really easily, has purple under his eyes, diagnoses with asthma before two, always has chest infections - arrghh. I am at my wits end!

I have life threatening symptoms with gluten - its not an allergy - so that just blows those mothers theories straight out of the water. Also - there has just been a study released showing that some gluten intolerance does in fact do damage to the intestines - I think its from Italy? Maybe google it and see what comes up!

Anyways - I feel your pain - it is so awful having sick children and not knowing why - or how to fix it - or what it all means....arrghhh!

[Ollie's Mom]

However, my big pet peeve (and forgive me if I offend anyone here) are the peanut allergy moms who tell me I'm "lucky" because at least his food intolerance is not life threatening. Forgive me, but I myself have never heard of a child who has complained because they cannot eat peanuts, shellfish or soy. Many of these moms simply cannot appreciate what it is like for a child to be deprived of cupcakes, pizza, and bread, and know its going to be that way for the rest of his/her life.

Not only that, but the peanut allergy moms have some sympathy from the general public (ie - those not affected by a peanut allergy themselves). When it comes to gluten, people are so ignorant as to what it means to live gluten free. Most of them don't even know what gluten is.

I used to have to listen to someone at my office complain about how she couldn't eat very much cake, or put sugar in her coffee anymore, or have hot chocolate (except occasionally) because she was diagnosed with type 2 diabetes. Not that I think diabetes is a small thing (I have another friend who is suffering from it, badly), but she was trying to tell me that her diet was more "restricted" than mine. It used to tick me off to no end. People just have no idea.

[w919oct]

My little one ended up being negative for CF too- but he is gluten-free since Jan and still has completely undigested meals in his stettorhea stools, oily, mucous - ugh! He is a twin and his brother is grown at a healthy weight and he is just getting further and further behind in every way. Height, weight, speech development, he bruises really easily, has purple under his eyes, diagnoses with asthma before two, always has chest infections - arrghh. I am at my wits end!

I have life threatening symptoms with gluten - its not an allergy - so that just blows those mothers theories straight out of the water. Also - there has just been a study released showing that some gluten intolerance does in fact do damage to the intestines - I think its from Italy? Maybe google it and see what comes up!

Anyways - I feel your pain - it is so awful having sick children and not knowing why - or how to fix it - or what it all means....arrghhh!

Oh gosh, I was so you 4 years ago. Your kid is sick, and no one is disagreeing with you but no one is giving you any answers except "It's not this nor that, but keep him off gluten and see how he does" and you grow so resentful towards the entire medical community because they don't treat this illness with the same verve as other food-related illnesses. After time, I began to realize that this was because the doctors themselves aren't sure of the long term effects of gluten intolerance and could not give me firm answers to my ever-growing list of questions. Doctors just don't like to say "I don't know."

You're son will get better on a gluten-free diet, trust me. We still get the purple circles under the eyes every now and again (I believe when he's been subjected to cross-contamination), but the stools are much better. While my son did get health-i-er when we first initiated a gluten-free diet, the full improvement we see today did not happen overnight. The developmental catch-up and improvements to his blood count did take a bit of time -- about 2-3 years. In fact, it was just this year is when his teacher "officially" stated that he should no longer be considered behind academically because he was testing at an advanced level on his Stanford Achievement tests. His pediatrician credits his steady improvement over 4 years time to a sustained gluten-free diet with no cheating whatsoever. I'll admit the trips to the bathroom still aren't pretty (that is why they continue to cite Crohns), but is does continually get better with time.

What you stated about the research from Italy -- that is exactly why I chose the Celiac Research Center in Baltimore, as much of that research is being conducted by Dr. Fasano from Naples. He runs this particular clinic, though he does not see pediatric patients any longer -- we visit another doctor in the practice. I do like the group, however, because they are a research center they do advocate testing.

Good luck with your own health. I don't have Celiac but am a fellow sufferer of an autoimmune disease, and know first-hand that it's hard enough to deal with your young child's ill-health, but even more difficult when your own health issues are bringing you down. Take care and stay strong!

[beebs]

I actually have two kids going through this stuff at the moment. They both had biopsies - the younger one border line and then other negative. The eldest (negative biopsy) became so anemic he developed a heart murmur, struggled to breathe, couldn't walk, fell over all the time...was awful..low vitamin K, Zinc, and D. They both have gastritis with no obvious cause and are both medicated and the eldest one experienced psychiatric problems due to the first medication he was on. They have both been on Zoton /Nexium since the beginning of the year. Still no improvement of gastritis. BUT the eldest one since being gluten-free doesn't seem to be malapsorbing anymore and his stools are normal...phew! I am pretty sure they are both celiac - I am, my mother is, they believe my grandfather was as well. But I think there might be something else going on with the youngest. Its so hard to sort stuff out and separate all the things and try and work out what is wrong! I have another autoimmune disease as well and I am on the road to be diagnosed with another - ugh! Good luck. If you ever find out what is wrong with your little one, let me know and vise versa - it seems like they are very similar in symptoms!

[w919oct]

Not only that, but the peanut allergy moms have some sympathy from the general public (ie - those not affected by a peanut allergy themselves). When it comes to gluten, people are so ignorant as to what it means to live gluten free. Most of them don't even know what gluten is.

I used to have to listen to someone at my office complain about how she couldn't eat very much cake, or put sugar in her coffee anymore, or have hot chocolate (except occasionally) because she was diagnosed with type 2 diabetes. Not that I think diabetes is a small thing (I have another friend who is suffering from it, badly), but she was trying to tell me that her diet was more "restricted" than mine. It used to tick me off to no end. People just have no idea.

You can tell that woman at the office that while my son had a cornucopia of symptoms related to Celiac since birth, the "kicker" that sent us into a frenzy was that he had started to show signs of diabetes -- wetting himself, excessive thirst, malabsorption, diabetic-type "zone outs," etc. Celiac causes diabetic symptoms, in addition to all of the others splattered all over this website.

In fact, the very day I heard the word "gluten' for the first time was when I just crashed the doctor's office without an appointment when he was experiencing these diabetic symptoms. At the time, he was still in the midst of testing, but I was so fed up and yelled "Do something now and stop testing him - I can no longer watch him waste away." That was the very moment she said, "This is a gluten thing -- I'm absolutely sure of it." My first question was "What the heck is gluten?" but boy do I know now.

Truth be told, the very reason I want firm answers is because I do incorrectly use the word "celiac" to describe his condition, even though all evidence suggests he does not have villi atrophy. However, if you say "gluten allergy," someone will try to stick him with an epipen if they believe he's been glutened (yes, we had a close call on that once). If you say "gluten intolerance," you get a lot of unsolicited feedback from folks who are simply doing gluten-free because it's the newest health craze. I'm getting just as frustrated with that, as well as having to fight my way through to the gluten-free shelves at Wegmans on the weekend.

I would never downplay anyone's health condition, but like you, I'm getting very frustrated when people compare what I perceive to be a better accommodated, more manageable and more widely recognized illness to what my child has. Let's face it, only we know what we've been through.

Good luck. I've been there too.

[w919oct]

I actually have two kids going through this stuff at the moment. They both had biopsies - the younger one border line and then other negative. The eldest (negative biopsy) became so anemic he developed a heart murmur, struggled to breathe, couldn't walk, fell over all the time...was awful..low vitamin K, Zinc, and D. They both have gastritis with no obvious cause and are both medicated and the eldest one experienced psychiatric problems due to the first medication he was on. They have both been on Zoton /Nexium since the beginning of the year. Still no improvement of gastritis. BUT the eldest one since being gluten-free doesn't seem to be malapsorbing anymore and his stools are normal...phew! I am pretty sure they are both celiac - I am, my mother is, they believe my grandfather was as well. But I think there might be something else going on with the youngest. Its so hard to sort stuff out and separate all the things and try and work out what is wrong! I have another autoimmune disease as well and I am on the road to be diagnosed with another - ugh! Good luck. If you ever find out what is wrong with your little one, let me know and vise versa - it seems like they are very similar in symptoms!

I most definitely will! For now, I will tell you both physicians we are currently seeing did tell me where their heads are at the moment (after much prodding from me; I am very good and getting doctors to share their hunches with me with the full understanding it is subject to change). Both believe they are looking at possible Crohns with gluten intolerance (most likely non-Celiac), as Crohns does run on my side of the family and we just learned that non-Celiac gluten intolerance runs on my husband's side. The two are apparently closely linked and exacerbate the symptoms of each other, which would explain why they are so severe and autoimmune-like in nature.

What they disagree on are next steps. Pediatrician believes if it is Crohns, it will appear on its own someday despite the gluten-free diet, and would prefer not to expedite its onset by doing a gluten challenge because he has done so well on this diet. Specialist would like to know if it is Crohns so we can better target his dietary needs (which would include a lot of vitamin supplements), as she is concerned his weight and growth seem to have plateaued recently. So that is where we are now. I decided to take pedatrician's advice for now (thanks to some great feedback from this site), and will touch base again if anything changes.

Please keep in touch, and good luck.

[azmontessoriteacher]

We see an excellent pediatric GI at Phoenix Children's. She told me on our last visit that she absolutely supports the diagnosis of severe non-Celiac gluten intolerance (meaning no flattened villi). Why is she so sure it exists? Because her adult daughter has it and becomes violently ill from the smallest amount of gluten. I am glad we have such an understanding GI to treat our daughter. Don't let anyone bully you. Find a new one or stick with your ped's diagnosis.