Subclinical Celiac Disease In 30 Month Old?

[houseofboys]

I am a new member and this is my first posting...

Our third son (of four, so far) has had poor weight gain (failure to thrive) and low weight for age & height, spontaneous vomiting, constipation, complaining of stomach pain, iron deficient, and the like since he was about four months old. He is 25.8 pounds at about 39" tall and has not gained any weight for the past year although he has grown in height. His pediatrician had been treating him for GERD off and on since birth thinking that the reflux might be causing the problems. All 4 of our boys have had GERD and eczema on and off since birth as well as two with asthma/reactive airway disease.

At the first appt with the pediatric gastroenterologist, he seemed aggressive in his approach to find out what was causing ds's discomfort. He thought a sluggish colon or celiac was to blame and had us start a laxative to hopefully clean out his system while he waited for the results of the blood tests. The only celiac test he had performed was the ttg which was "Spot on normal" and the h. pylori was negative too. He did an endoscopy with biopsy the next month after we emailed to say that the laxative wasn't increasing his appetite and was only causing multiple bm's with painful rashes. The endoscopy was "normal" as were the biopsy results.

At his follow-up appointment yesterday, I saw over his shoulder that ds's ttg was 20 on a scale of 0-19 negative, 20-100 equivocal, 100+ positive. Total food intake is typically 1/2 slice of whole wheat bread (and an "end/heel" at that!) or equivalent (2-3 triscuts or pretzels) per day. Even with cookies he stops at half a bite. His main caloric intake is the generic pediasure which is certified lactose and gluten-free. He will eat bites (and not more) of cheese but is always craving plain chicken and or steak mixed with nothing. He will not eat any fruits or veggies. We've noticed that if he eats any bread or gluten containing product, he will not eat anything for the next 2 to 3 days. He will also get backed up and require either apple juice or supplemental laxative to get him going.

At the appt yesterday, the doc was dismissive about any problems and suggested that we now take him to a speech pathologist to evaluate him for oral or motor problems ??? because there is nothing clinically wrong with him. BTW this is at a major research/teaching university hospital that supposedly has a celiac specialty clinic in house. Actually, this specialty clinic (downstairs from the pedGE) is where the endoscopy was performed. Also, my husband & I voluntarily got tested for celiac (EMA, IgA & IgG Gliadin - not ttg) and our results were processed by the Mayo clinic. Surprisingly, dh had an equivocal IgA Gliadin result of 41 (normal <25, 25-49.9 equivocal, 50+ positive) and I was at normal levels for all (like 2.3). However, I have a sister that is a celiac (not clinically diagnosed but her doc agrees) and all of my first degree relatives have IBS, colitis, or thyroid diseases including myself and all have moderate to severe weight issues.

Our family all eats the same diet so there is some validity to even an equivocal result, right? DS's doc dismissed these results and said that the IgA Gliadin test was meaningless and should have been dropped long ago from all labs and that the only reason why labs perform this test is because they are out to make money. Furthermore, he inferred that this test often worries the patient who then seeks further help from a gastroenterologist who then has to do needless endoscopies and biopsies - ie we waste his time. Our internist doesn't agree and has him seeing a local gastroenterologist as he has some of the more neropathic symptoms and extreme fatigue 4-6 hrs after ingesting gluten as well as intermittent abdominal pain and severe lower back pain 2-3 days after ingesting large quantities of gluten. Please note that our family does not eat out very much, I am a sahm who makes most everything from scratch, and we almost always eat strictly whole grain products (ie. pasta, pizza (homemade), bread (some homemade), etc.).

My question is this...If ds doesn't eat that much to begin with, let alone eat that much gluten, would a ttg result of 20 in a then 29 month old toddler (the age at the blood test) be considered fairly high? When I asked the doc about taking him to another facility in-state that has a children's feeding program that specializes in kids who won't eat solid foods, he said that they could do that there but didn't recommend it. He just said that kids can grow up eating just one thing and ds's just happens to be pediasure. Should we pursue a "clinical diagnosis" any further?

As a little test, we are going gluten-free anyway to see for ourselves if ds improves. We have lost faith in the "specialist" who did not even want to try a gluten-free diet ("it's an unnecessary burden for him"). DS is on day 4 without significant gluten (no gluten at all for 2 days) and tonight ate 2 full slices of a 12" homemade gluten-free pizza! We haven't seen him eat this much in a very long time. He did take one bite and then waited about 15-20 minutes before returning to the table to consume his 2 pieces albeit very slowly. Actually, our two older sons (4 & 6) told me that they actually liked this pizza better than the regular wheat crust pizza I usually make. The one year old, who also shuns bread products and is starting with constipation, ate nearly 2 slices of it too!

Thank you for taking the time to read our post. Please let us know if we are, or are not, thinking in the right direction.

[Ursa Major]

Hi, and welcome to this board. It seems to me that the GI is useless and doesn't know what he is talking about. You may have a house full of people who may be gluten intolerant, but don't necessarily have celiac disease. But being gluten intolerant (or gluten sensitive) is every bit as serious as celiac disease. Often it will cause neurological symptoms rather than bowel and stomach problems.

Your little guy seems to have tested that pizza with that one bite, to see if it would make him feel bad, before he came back to eat more! Smart little tyke.

All of his symptoms indicate a huge problem with gluten. I think you are doing the right thing by making your household gluten free. And yes, an equivocal result after being gluten light for quite a while could mean celiac disease.

If you want to get something official, you could have testing done by Open Original Shared Link . Their testing is much more sensitive than traditional testing, and you don't have to consume gluten for it to be accurate.

[azmom3]

The diet should give you better answers than any test, but it may take a little time for some of the symptoms to improve. Also, you mentioned GERD...is he taking medication for this? If so, has it helped? If he is taking medication and it's not improving the symptoms and/or you don't get the results you're looking for with the gluten-free diet, please also look into eosinophilic esophagitis as a possibility. Your child's symptoms match it to a tee, unless GERD medication IS working. It is estimated that up to 10% of kids who have true GERD, actually have EE. Most kids with eosinophilic esophagitis are first evaluated for celiac. During the endoscopy, the GI doctor can check for both at the same time if they suspect it. I'm just curious if your dr. mentioned this as a possibility. If not, with those symptoms and the fact that your other children also have GERD, I would highly recommend getting a second opinion from a dr. who is familiar with this kind of disorder. My 2 year old was just recently diagnosed and I'd be happy to answer any questions you may have. In the meantime, you might want to read up on it yourself and see if it sounds like your son. Good luck!

[azmom3]

The diet should give you better answers than any test, but it may take a little time for some of the symptoms to improve. Also, you mentioned GERD...is he taking medication for this? If so, has it helped? If he is taking medication and it's not improving the symptoms and/or you don't get the results you're looking for with the gluten-free diet, please also look into eosinophilic esophagitis as a possibility. Your child's symptoms match it to a tee, unless GERD medication IS working. It is estimated that up to 10% of kids who have true GERD, actually have EE. Most kids with eosinophilic esophagitis are first evaluated for celiac. During the endoscopy, the GI doctor can check for both at the same time if they suspect it. I'm just curious if your dr. mentioned this as a possibility. If not, with those symptoms and the fact that your other children also have GERD, I would highly recommend getting a second opinion from a dr. who is familiar with this kind of disorder. My 2 year old was just recently diagnosed and I'd be happy to answer any questions you may have. In the meantime, you might want to read up on it yourself and see if it sounds like your son. Good luck!

[houseofboys]

The diet should give you better answers than any test, but it may take a little time for some of the symptoms to improve. Also, you mentioned GERD...is he taking medication for this? If so, has it helped? If he is taking medication and it's not improving the symptoms and/or you don't get the results you're looking for with the gluten-free diet, please also look into eosinophilic esophagitis as a possibility. Your child's symptoms match it to a tee, unless GERD medication IS working. It is estimated that up to 10% of kids who have true GERD, actually have EE. Most kids with eosinophilic esophagitis are first evaluated for celiac. During the endoscopy, the GI doctor can check for both at the same time if they suspect it. I'm just curious if your dr. mentioned this as a possibility. If not, with those symptoms and the fact that your other children also have GERD, I would highly recommend getting a second opinion from a dr. who is familiar with this kind of disorder. My 2 year old was just recently diagnosed and I'd be happy to answer any questions you may have. In the meantime, you might want to read up on it yourself and see if it sounds like your son. Good luck!

When the doctor did the endoscopy, he said that he looked for and did not find (supposedly) any abnormalities, structural or visible damage. I will look into it and if ds does not improve over the next few months, we will definitely get another opinion and specifically ask about this condition.

As for the reflux meds, the pediatrician tried him on ranit (the generic of Zantac (it has worked better for most of our kids)) which did not work that well. She then switched him to the ppi Prevacid which stopped the spontaneous vomiting and reduced the frequency that he complained of stomach pain. But, he actually ate less and drank more when this medicine took full effect after about a month on it. He was having bouts of constipation switching to diarrhea before this medicine but now is fairly regular (now once/day but it's black and foul!). The pedGE now has me gradually decreasing his Prevacid over the course of the next two weeks as he says that it will cause irreparable damage to his stomach mucosa if he is on this type of medication long term (ie when a person comes off of it, his/her acid producing cells let open open the flood gates, so to speak, and cannot regain control of the acid production). We're hoping that by pairing the gluten-free diet with his reduction in prevacid with work in concert and keep him from vomiting again.

We were vehemently opposed to an appetite stimulant and propulsant because they have known cardiac arrest risks. That's why it is frustrating that the doctor would mention this at a previous appt, but not recommend an elimination diet at all. Go figure.

Oh, btw, we were wondering if this was normal or indicative of a gluten sensitivity... When ds was on milk of magnesia, his stools became grainy when they loosened up. I had to phsically pick the grains off of his bottom and general diaper area as they would stick to him. When they told me to switch to Fletcher's castoria, the initial bm residue was sandy and again stuck to his bottom.

I guess we all are looking at a gluten-free diet, but in the long run, I feel that we will be healther as a result.

Thank you all for your replies and suggestions. It is comforting to have such a wonderful resource and support group at our fingertips!

[azmom3]

When the doctor did the endoscopy, he said that he looked for and did not find (supposedly) any abnormalities, structural or visible damage. I will look into it and if ds does not improve over the next few months, we will definitely get another opinion and specifically ask about this condition.

As for the reflux meds, the pediatrician tried him on ranit (the generic of Zantac (it has worked better for most of our kids)) which did not work that well. She then switched him to the ppi Prevacid which stopped the spontaneous vomiting and reduced the frequency that he complained of stomach pain. But, he actually ate less and drank more when this medicine took full effect after about a month on it. He was having bouts of constipation switching to diarrhea before this medicine but now is fairly regular (now once/day but it's black and foul!). The pedGE now has me gradually decreasing his Prevacid over the course of the next two weeks as he says that it will cause irreparable damage to his stomach mucosa if he is on this type of medication long term (ie when a person comes off of it, his/her acid producing cells let open open the flood gates, so to speak, and cannot regain control of the acid production). We're hoping that by pairing the gluten-free diet with his reduction in prevacid with work in concert and keep him from vomiting again.

We were vehemently opposed to an appetite stimulant and propulsant because they have known cardiac arrest risks. That's why it is frustrating that the doctor would mention this at a previous appt, but not recommend an elimination diet at all. Go figure.

Oh, btw, we were wondering if this was normal or indicative of a gluten sensitivity... When ds was on milk of magnesia, his stools became grainy when they loosened up. I had to phsically pick the grains off of his bottom and general diaper area as they would stick to him. When they told me to switch to Fletcher's castoria, the initial bm residue was sandy and again stuck to his bottom.

I guess we all are looking at a gluten-free diet, but in the long run, I feel that we will be healther as a result.

Thank you all for your replies and suggestions. It is comforting to have such a wonderful resource and support group at our fingertips!

A few things I forgot to mention. First of all, celiac is much more likely as it occurs in 1/133 people. EE is fairly rare (1/10,000); however some have called it a mini-epidemic as it's being diagnosed a lot more often over the past 10 years. Secondly, most doctors have never even heard of eosinophilic esophagitis and wouldn't even know to look for it, so it's very possibly that when your son had his biopsies that they never even looked for this. My son's pictures after the endoscopy looked perfectly normal, but when the slides were viewed, specifically looking for eosinophils, they found the problem. It's important to find a dr. who is familiar with it. Our allergist is the first one who ever mentioned that word to us. Speaking of allergies, not all EE kids have food allergies, but most of them have many. That was one indication that pointed us in this direction. He reacted to almost every single thing we gave him...even rice. This is not however considered a main symptom. The main symptoms are vomiting, diahrrea, failure to thrive (my son just hit 22 pounds at 27 months), and abdominal pain (which can be disguised as irritability/clinginess in younger children). Not all of these are present in all EE kids. As far as the constipation, have you tried miralax? I know a lot of people that have had success with that and it has worked wonders for us. I think the gluten-free diet is the best thing you can do if you think it's celiac, regardless of what any test or dr. says. I guess I'm just trying to point out another possibility if your gut is telling you it might be something more or if you don't see the results you're looking for. Again, good luck! You're doing the right thing by asking questions on this board. I learned so much (and am still learning) from everyone here. I have found that you take all the information, go with your mommy instinct and do what seems right for you and your child.

[rez]

tTG is the best test to screen for Celiac. Of all the tests, that's the MOST IMPORTANT ONE that you and your husband SHOULD have had. Our tTg just said below 7 negative, and anything above positive. I know all labs are different. Before you put him on a gluten-free diet, I would get a second opinion. You should find out for sure if he has Celiac because then all the other family members should be screened. I would definitely get a second opinion ASAP. I would say that the tTG is positive, especially for a child that age. It's a battle out there when it comes to doctors and Celiac. We've been through several, but now are in the hands of the best. Get a great doctor, and it will make your job A LOT easier. I would not reccommend a gluten-free diet until you get your second opinion. I would also run the tTG on you and for surely your hubby. We are in the process of a gluten challenge with our 8 year old. His tTG was only slightly elevated, but the doc said positive is positive. Also, you need to have an expert scoping him that knows exactly what he's looking for, not just Marsh 4 total villous atrophy. There are more subtle signs in the early stages. Get a second opinion!!! Good luck.

[houseofboys]

tTG is the best test to screen for Celiac. Of all the tests, that's the MOST IMPORTANT ONE that you and your husband SHOULD have had. Our tTg just said below 7 negative, and anything above positive. I know all labs are different. Before you put him on a gluten-free diet, I would get a second opinion. You should find out for sure if he has Celiac because then all the other family members should be screened. I would definitely get a second opinion ASAP. I would say that the tTG is positive, especially for a child that age. It's a battle out there when it comes to doctors and Celiac. We've been through several, but now are in the hands of the best. Get a great doctor, and it will make your job A LOT easier. I would not reccommend a gluten-free diet until you get your second opinion. I would also run the tTG on you and for surely your hubby. We are in the process of a gluten challenge with our 8 year old. His tTG was only slightly elevated, but the doc said positive is positive. Also, you need to have an expert scoping him that knows exactly what he's looking for, not just Marsh 4 total villous atrophy. There are more subtle signs in the early stages. Get a second opinion!!! Good luck.

For the tTg test he had, 0-19 is negative, 20-100 was equivocal, and 100+ positive. We believe that this range was NOT adjusted for age or food intake. We do believe that it would be very hard to get a positive result on any panel test because he refuses to eat food with gluten. When he did eat a gluten containing food, he then wouldn't eat it again for two to three days. DS SUPPOSEDLY saw a pedGE at a university hospital that specializes in celiac (one of the hospitals in the celiac study consortium) and we were soley disappointed in their attitude and his treatment. Although the pediatrics segment is independent from the celiac research center, we figured that there had to be some sort of collaboration seeing that the endoscopy was physically performed in a surgery suite in the celiac centers office by the pedGE. What is disheartening is that this doctor does not seem to have any faith in anything but a positive tTg and positive endoscopy in diagnosing celiac spectrum sensitivities, as you said above. UGH!!!!! We would have had our ds go to a local GE, but the practice does not see children so we had no choice but to go where we could get an appt.

My husband will not go gluten-free until he sees the local gastroenterologist and sees what he recommends. For our ds, he is on his 5th day of being gluten-free and we are already noticing several changes - his disposition has improved greatly, his energy levels have increased, he isn't as irritable, and he has asked for and eaten 2nds and 3rds for the first time in his life these past two nights. Today he told me numerous times that he loved me and told my husband how much better he was feeling. It all could be a coincidence, but I am following my heart and gut feelings. This is how my sister discovered her celiac sensitivity and this was at the recommendation of her doctor. We honestly don't think that he has much damage, if at all, but he seems to be very sensitive to gluten and aware of how it makes him feel when he does ingest it. We also feel that a gluten-free diet can't hurt him and is actually linked to better overall health. If he doesn't improve over time or his vomiting and stomach pains reccur, we will definitely seek out another opinion. The pedGE also said that he might just have a sluggish colon but that wouldn't explain the tTg results.

We also hesitate to get a clinical diagnosis on his records as we have read that it may preclude him from getting normal rate health and life insurance in the future. With dh having been born with two heart defects we know first hand how a "preexisting condition" can affect life insurance premiums.

I am waiting to hear back from our son's pediatrician as to how she suggests us to proceed. We may ask her to do the full celiac panel on all of our kids to see where their levels are but we feel that ds has been put through enough and it may be difficult to find a great doctor that will be able to diagnose him fully. I am sorry that you have had to go through this with your son (as well as countless others, unfortunately), but am happy for you to have found a wonderful physician.

Thank you for your helpful advice and good luck with your son!

[taweavmo3]

I would trust your instincts...if you are seeing results on the diet, I think that's proof enough. I have one daughter who tested positive for celiac, but before we got a positive test, she was so very sick. She was 3 years old, and weighed 20lbs. I just couldn't wait for my other kids to get to that point. If my dd hadn't been so sick, with developmental delays as well, I probably wouldn't have been so aggressive with putting my whole family on the diet. But when you see the damage that it can do.....I just didn't want to take any chances.

It's hard at first, but now it's just a way of life for us. My kids still eat plenty of junk food, and I really don't think they feel deprived. My 7 year old is very confidant, goes to parties and sleepovers, and hasn't had any problems with the other kids. I try to have a positive attitude about it...and that seems to help.

Good luck with what you decide, it's a tough choice, especially when most doctors want paper proof of celiac before they'll recommend a diet. You know what though? I took my dd to her pedi GI last week for a checkup, and after asking him a few questions about my 6 month old....I quickly realized that he didn't know much AT ALL about Celiac beyond diagnosing it. So, I figure it's up to me to take charge of my children's health when it comes to celiac, I can't sit around and wait for the medical community to catch up!

[TCA]

My son's tests were all equivocal or normal, but he kept getting sicker. He got to where he wouldn't eat ceareal, crackers, and most breads. At 3 he was still wearing size 24 mos. We started the diet last Jan. and he's now in a 4T and eating more all the time. he is doing incredible. The GI agrees that he clinically has celiac, even though the tests didn't show it. He's not giving him a diagnosis because it would hinder his ability to get insurance later in life and he knows that I'll keep him gluten-free. If he decides to do a gluten challenge later in life for further testing, that is his decision, but we're keeping him gluten-free. Good luck in your gluten-free trial! I hope the answers are clear, whatever they may be.

[Nancym]

Here's an article on EE you might find interesting, Open Original Shared Link

[Guhlia]

I think everyone else has pretty much covered everything. I just wanted to say welcome to the board!

[houseofboys]

Thank you to all who have taken the time to read this thread and for your advice. I am so thankful that we found this group! It looks like this is going to be a long road ahead, but it is comforting to know where to turn if we have questions or seek information (and it's not to the doctors!).

[naturalmomma]

I would agree with you on the trust your instincts. My doc wont order the tests for my smaller boy cause she says they arent accurate. My baby is 16 ponds at 15 month and has been there too long, my 5 year old is 28 pounds, they both have diarreah abd constipation, black circles under eyes and have major ups and downs. My 5 year was pooping his pants 6 times a day. Its getting better for both, baby started to grow and the 5 year old is down to one poopy bum a day. My doc says that at that age their brain development is too much at risk to take chances, so she recommended gluten free(it is our choice WE are the parents!!!!) This all came out when I got really sick and had to find a doctor and my cousin that has celiac got me into her doctor asked me some questions looked at my height(Im really short) and told me to cut out gluten. You have to understand that I got so sick I couldnt function with three kids you cant wait that long. She ordered the blood tests voila!!! She didnt just treat me she looked at everyone in family . She is awsome!!! My oldest is autistic so I already did gluten free casein free, so this was actually easier for me to do it for the family. this saved my family . Im not sure why we have to wait so long and we are told to stay on gluten. I can tell you that it is unbearable and debilitating and wouldnt go back on it if someone paid me a million buck. If I need peace of mind over my kids I will do enterolabs noninvasive and quick and no gluten challenge!!

[sillyactsue]

A few things I forgot to mention. First of all, celiac is much more likely as it occurs in 1/133 people. EE is fairly rare (1/10,000); however some have called it a mini-epidemic as it's being diagnosed a lot more often over the past 10 years. Secondly, most doctors have never even heard of eosinophilic esophagitis and wouldn't even know to look for it, so it's very possibly that when your son had his biopsies that they never even looked for this. My son's pictures after the endoscopy looked perfectly normal, but when the slides were viewed, specifically looking for eosinophils, they found the problem. It's important to find a dr. who is familiar with it. Our allergist is the first one who ever mentioned that word to us. Speaking of allergies, not all EE kids have food allergies, but most of them have many. That was one indication that pointed us in this direction. He reacted to almost every single thing we gave him...even rice. This is not however considered a main symptom. The main symptoms are vomiting, diahrrea, failure to thrive (my son just hit 22 pounds at 27 months), and abdominal pain (which can be disguised as irritability/clinginess in younger children). Not all of these are present in all EE kids. As far as the constipation, have you tried miralax? I know a lot of people that have had success with that and it has worked wonders for us. I think the gluten-free diet is the best thing you can do if you think it's celiac, regardless of what any test or dr. says. I guess I'm just trying to point out another possibility if your gut is telling you it might be something more or if you don't see the results you're looking for. Again, good luck! You're doing the right thing by asking questions on this board. I learned so much (and am still learning) from everyone here. I have found that you take all the information, go with your mommy instinct and do what seems right for you and your child.

My daughter is 29 months old and weighs 21 lbs. She has been healthy as a horse her whole life, except that since birth she has had a stuffy nose. That went away with a nightly dose of zyrtec. At about nine months she started eating solid foods, up until then she was breastfed only. She has stopped gaining weight since she started eating solid foods. Her dad was diagnosed by blood work and endoscopy with Celiac disease last year. I took her off of gluten and sent off for tests at enterolab. They said she had no intestinal damage but one of the scores was high (sorry the paper isn't in front of me and I can't remember what one) and that she had two copies of the gene for gluten sensitivity and no gene for celiac. Their recommendation was gluten free for life.

When I say she is healthy as a horse I mean unlike my other kids she rarely gets a cold or flu, has never had an infection of any kind. She has a very nastymushystinky stool on gluten though. Off of gluten all of her symptoms went away, except she still isn't gaining weight. She is growing though. She just hit 21 lbs after being 20 lbs for a year. It has been suggested to me by other people on the forum that there may be other issues besides the gluten causing her to not grow.

Her gastro doctor is only looking at calorie intake and meal schedules. She says she will only diagnose by the endoscopy/blood work and she is looking for celiac which I already know isn't there. We challenged my daughter with gluten and are waiting for test results. If those results are negative depending on what she sees she may want her to stay on gluten for 4 or 5 more months and be tested again. I'm not willing to do that. Now that I know to look for other things that may cause her to not grow I am looking. Your son sounded very similar to my daughter so I will go now and google EE and see what I can learn. Do you have more experience you would share with me that might or might not ring a bell. Any more info on this is gratefully appreciated.

Gloria

[azmom3]

My daughter is 29 months old and weighs 21 lbs. She has been healthy as a horse her whole life, except that since birth she has had a stuffy nose. That went away with a nightly dose of zyrtec. At about nine months she started eating solid foods, up until then she was breastfed only. She has stopped gaining weight since she started eating solid foods. Her dad was diagnosed by blood work and endoscopy with Celiac disease last year. I took her off of gluten and sent off for tests at enterolab. They said she had no intestinal damage but one of the scores was high (sorry the paper isn't in front of me and I can't remember what one) and that she had two copies of the gene for gluten sensitivity and no gene for celiac. Their recommendation was gluten free for life.

When I say she is healthy as a horse I mean unlike my other kids she rarely gets a cold or flu, has never had an infection of any kind. She has a very nastymushystinky stool on gluten though. Off of gluten all of her symptoms went away, except she still isn't gaining weight. She is growing though. She just hit 21 lbs after being 20 lbs for a year. It has been suggested to me by other people on the forum that there may be other issues besides the gluten causing her to not grow.

Her gastro doctor is only looking at calorie intake and meal schedules. She says she will only diagnose by the endoscopy/blood work and she is looking for celiac which I already know isn't there. We challenged my daughter with gluten and are waiting for test results. If those results are negative depending on what she sees she may want her to stay on gluten for 4 or 5 more months and be tested again. I'm not willing to do that. Now that I know to look for other things that may cause her to not grow I am looking. Your son sounded very similar to my daughter so I will go now and google EE and see what I can learn. Do you have more experience you would share with me that might or might not ring a bell. Any more info on this is gratefully appreciated.

Gloria

PM me and ask any questions you want. I'd be happy to help. I just don't check this site as regularly now. The best information I have found so far is at www.apfed.org. It's a website dedicated to eosinophilic disorders. Also, Cincinatti's Children's Hospital has an eosinophilic center there. They are the leading researchers on this. Our son is on a no foods diet, just an elemental formula called elecare, for a total of 12 weeks. It gives him all the nutrition he needs. We are in week 7 and he is gaining weight finally, but most importantly, he is the happiest adn healthiest I've ever seen him. Most people thought he was "normal" before because other than being small for his age, there's nothing glaringly wrong from the outside, but his insides were suffering. I KNEW something wasn't right, just didn't know exactly what. With eosinophilic disorders, each individual is treated differently. There are many different symptoms, but the main ones (and many people only have one of these) are vomiting, diahrrea, failure to thrive, abdominal, chest, throat pain (which for a baby might be irritable, fussy, clingy, not sleeping or eating well, etc. since they can't verbalize the discomfort.) Many EE kids also have multiple food allergies, but not all do. Some don't have any. It can be triggered by environmental things as well. My son's symptoms were failure to thrive, (still not on the growth chart, but getting closer), vomiting ( in spurts, not all the time), constipation (going every 4-5 days), chronic hives (anywhere from a few to hundreds almost every single day), asthma, eczema, and chronic sinus and eye infections. He's allergic to most everything we've tested him for (environmental, seasonal, and food), including apples, rice and bananas and things like that. There are many people that have discovered they had this by only having one of these symptoms though and others who are much worse off than we are. It really varies so much and that it why everyone is treated so differently. My son is on about 5 different medications right now, but I'm hoping to eventually be able to wean him off some of them. It is more common to have EE if you have a history of any type of allergy in your family...asthma, eczema, environmental or food allergies, etc. Most have also been suspected of celiac and/or cystic fibrosis first as there is still so little known about these disorders. Please let me know what specific questions you may have also. Like I said, I'd be happy to help. So many people, including people from this site have helped us so much along the way. I hope that whether it's this or something else, you are able to get answers soon. The waiting is by far the hardest part. Good luck!

[kirbymom]

First thing and I believe you have chosen to do this - trust your child! He was avoiding gluten for a reason! Other people will show an unusual craving for it! Second thing, doctors really do not know very much about celiac and it is not well explained in terms that they reliably believe in. As I am doing research I see books written by parents that have mistakes in the science and books written by scientists that are too "scientific". I can slog through them, but I have a Ph. D. in biochemistry and am used to this type of research! Very few doctors would have the time or resources to invest in this type of research -I am doing it for my own family.

Second, congratulations on the changes you are seeing. I have a very pleasant 31 month old with history of eczema and asthma as well as failure to thrive - at 6 mos she was 12 lbs, at 1 year 16.5 lbs, at 21 months 18 lbs. I spoke to my doctor several times and he just attributed to her getting sick in a daycare setting. Early on, the pediatrican thought it was because her asthma was not under control (eczema at 2 mos I think, asthma diagnosis at 4 mos). When she was very young I woke/fed her every 1-11/2 hours around the clock just to get calories in her! When she finally presented with a lot of diahrea (sp?) at age 2, we has already suspected gluten and could trace it to change in diet at the daycare. Although she was not diagnosed as celiac - this is not something our doctor considers, we took her off gluten. She is now 24 lbs and 4 1/2 inches taller than seven months ago.

Third, to the mom who is noticing growth, but little weight gain - when children are sick one of the earliest signs is weight loss, then height loss, then - if very severe head circumference size issues so when they are recovering, the opposite occurs. My daughter gained a little weight - height shot up to on the growth chart at a percentile similar to her sister's and she is now gaining again - stick with it and you will see the changes!

To the orignal poster, your family history is very similar to mine except no celiac diagnosis in either hubby's family or mine. Gluten elimination is showing that we were all intolerant and even thoough I never showed any "symptoms" (but do have eczema and asthma), my 2 year old and I are actually the worst. Best wishes.