Celiac Or Nc Gluten Sensitivity… Or Not?

[nan55]

Hi! My son’s doctor is well-meaning but doesn’t seem to know a lot about celiac or gluten sensitivity, and I have so much questions, I was hoping some of you might be willing to help me. (Forgive my errors, english is my second language.)

My son is 6 1/2 years old. His symptoms now : 1) Lack of growth. He’s small and very skinny (35 pounds), but still on the bottom curve of the growth chart. He’s gained only 2 pounds during the last 2 years, but he’s eating normally. Following the suggestion of a dietetician, for the last 4 years I’ve tried to put as much calories in his food (oil in his applesauce, mayo on his fish, ketchup on his vegetables…) but he still doesn’t gain weight. But he doesn’t loose any either. 2) Leg pains. About twice a week he complains of intense leg pains. But they do go away if I give him Motrin. Up to now I thought they were growing pains. 3) Lack of memory and concentration. Too many examples to list here, but he looses and forgets everything, he’s easily distracted. The teacher say’s he’s like in his own little bubble at school. When he was younger, I thought he might be very slightly autistic. Last year I had him tested by a psychologist for attention deficit. She says he doesn’t have attention deficit, and it might just be a lack of maturity or motivation. She wants to have him tested again in a year with more precise psychological tests.

He has no other symptoms. Before reading posts on this board, I thought these were unrelated problems, but now I’m wondering if they might all be related, and maybe caused by a gluten problem??? Could it be possible? The problem is, he’s never had diarrhea in his life. That’s why the doctor says it can’t be celiac. He never has stomach pains either. He looks healthy and seems to have a normal level of energy, no apparent weakness or fatigue. Does anyone know if this could be consistent with a gluten problem?

When he was 2 years old, the hospital ran a lot of tests on him to see why he was failing to thrive. It all came back negative, including for celiac (antigliadine and transglutaminase, I think). Now the doctor has ordered another antigliadine test, just to reassure me I think, but she thinks it will be negative.

The doctor also ordered a blood test to look for anemia. We do not have the results yet. If that blood test shows there is no anemia, does that pretty much rule out gluten sensitivity???

I’m just starting to understand a little about gluten sensitivity thanks to this forum. As I understand, there are varying degrees of gluten sensitivity? (I’m still very confused about the difference between celiac, gluten allergy, sensitivity, and intolerance.)

My questions :

Do you think his symptoms could be related to gluten sensitivity, even if he hasn’t lost weight and doesn’t have diarrhea?

Is the antigliadine test specific for celiac or will it be positive even if he has another form of gluten sensitivity? If his test for celiac comes back negative, are there other ways to test for other forms of gluten sensitivity? (I don’t want him to go through the biopsy. I’ve read many posts about Enterolab here : is this controversial or is it generally recognised as reliable? Can they tell if he has a gluten problem other than celiac?)

I was thinking of trying a gluten free diet for a year, just to see if it might help him, even if his test is negative. Do you think it would be a good idea? I don’t want to torture him (us) needlessly, so if some of you who have experience with celiac think it is unlikely to be a gluten problem, I won’t do it. But I’m willing to try it if there’s a slight chance it might help him.

But since he has no diarrhea, how would I know if he is improving? Would one year be sufficient to see an improvement in his weight gain? Or in his concentration?

We were thinking of putting the whole family on this gluten free diet, just to make sure there is no cross-contamination. And it might also help my other son who has severe asthma. I read elsewere that asthma symptoms sometimes diminish on a gluten free diet. Is this true??? Has someone experienced this? I’ve also had undiagnosed (despite a year of tests) intestinal problems for the last 15 years. I do not think it is celiac, as my symptoms do not match, but I’m willing to give the diet a try, maybe it will help?

I would appreciate so much if some of you have tips, or similar experiences to share. And please tell me if you think I’m mistaken, and if you feel my son’s symptoms do not correspond to a gluten problem.

That’s it for now, sorry for being so long, I have so many other questions, any input will be greatly appreciated!!!

Nancy

[bmzob]

hello and welcome to the board.

i'm a newly diagnosed celiac and i'm still learning alot about everything. the only question i can really answer is the one about your son not having weight gain or diarrea...i never had any classic symptoms like that either. i never had diarrea or the constipation that some people get, i didn't lose or gain weight i have always been a healthy weight. i have other diseases that, after being diagnosed with celiacs, i have come to find that they may be becuase of the celiacs. so even though he doesn't have the classic symptoms of celiacs, he still could have it. the symptoms he has i have seen alot of other people on this board with celiacs have the same symptoms...so it is possible.

sorry i couldn't be of more help, but i'm sure someone else will come along with more knowledge soon.

good luck!

[mouse]

I will try to answer as best as I can. The forum is not real busy on the weekends, but I am sure that many parents will be posting in the next couple of days.

As far as symptoms are concerned. There are over 200 symptoms and there are some people who have no symptoms. Your doctor is wrong in that you do not have to lose weight, nor have diarrhea. The things that you have mention can be a sign of Celiac Disease. Testing in young children is not that reliable nor is it always reliable in adults. You can never have a false positive on the blood test, but you can have a false negative. Do you know if your doctor did the whole panel of 5 tests? If you do decide to go gluten free as a family if he is negative, I would suggest that you personally, get tested before you go gluten-free. You also sound that Celiac Disease is a possibility for you. I am not a doctor, but I know how I felt for many years before I became what they called the Classic Celiac. Celiac Disease is inherited.

If the tests come back negative and you all go gluten free, you asked how would you know if the diet is helping him. Trust me, that you would know. Parents on here will post about the unbelivable growth and personality changes, among other things.

I wish to welcome you to the forum and hopefully we will be able to give you some insight and help.

[happygirl]

Welcome to the board. I will try to answer any that I can.

Hi! My son’s doctor is well-meaning but doesn’t seem to know a lot about celiac or gluten sensitivity, and I have so much questions, I was hoping some of you might be willing to help me. (Forgive my errors, english is my second language.) --- Your english is great! And, yes, doctors might be well meaning, but most do not know a lot about celiac.

My son is 6 1/2 years old. His symptoms now : 1) Lack of growth. He’s small and very skinny (35 pounds), but still on the bottom curve of the growth chart. He’s gained only 2 pounds during the last 2 years, but he’s eating normally. Following the suggestion of a dietetician, for the last 4 years I’ve tried to put as much calories in his food (oil in his applesauce, mayo on his fish, ketchup on his vegetables…) but he still doesn’t gain weight. But he doesn’t loose any either. 2) Leg pains. About twice a week he complains of intense leg pains. But they do go away if I give him Motrin. Up to now I thought they were growing pains. 3) Lack of memory and concentration. Too many examples to list here, but he looses and forgets everything, he’s easily distracted. The teacher say’s he’s like in his own little bubble at school. When he was younger, I thought he might be very slightly autistic. Last year I had him tested by a psychologist for attention deficit. She says he doesn’t have attention deficit, and it might just be a lack of maturity or motivation. She wants to have him tested again in a year with more precise psychological tests. All of these are classic celiac symptoms. Doesn't mean that it is celiac, but it is most certainly an option

He has no other symptoms. Before reading posts on this board, I thought these were unrelated problems, but now I’m wondering if they might all be related, and maybe caused by a gluten problem??? Could it be possible? The problem is, he’s never had diarrhea in his life. That’s why the doctor says it can’t be celiac. He never has stomach pains either. He looks healthy and seems to have a normal level of energy, no apparent weakness or fatigue. Does anyone know if this could be consistent with a gluten problem? Your doctor is incorrect. You do NOT have to have diarrhea to have Celiac. It is one of the potential symptoms, but there are a range of symptoms. Some people have a ton of symptoms, some have none, and everyone else falls somewhere in between, with a variety of symptoms and every sort of combination possible. Some people have diarrhea, some have constipation. Some have weight loss, some have weight gain. Doesn't make sense, but those are just some examples. Doctors refer to it as a "medical chameleon" because there are so many potential symptoms.

When he was 2 years old, the hospital ran a lot of tests on him to see why he was failing to thrive. It all came back negative, including for celiac (antigliadine and transglutaminase, I think). Now the doctor has ordered another antigliadine test, just to reassure me I think, but she thinks it will be negative.

The doctor also ordered a blood test to look for anemia. We do not have the results yet. If that blood test shows there is no anemia, does that pretty much rule out gluten sensitivity??? Anemia can be a result of Celiac (because the body is not absorbing nutrients correctly. However, NOT EVERYONE has anemia. Some do, some don't. Certainly does NOT rule out Celiac.

I’m just starting to understand a little about gluten sensitivity thanks to this forum. As I understand, there are varying degrees of gluten sensitivity? (I’m still very confused about the difference between celiac, gluten allergy, sensitivity, and intolerance.) Well, it is hard to grasp. There is a gluten allergy (which is NOT celiac), Celiac (which is an autoimmune response), and gluten sensitivity/intolerance. Celiac is the only one that will show up on the Celiac blood panel. but, some people are negative and do better on a gluten free diet (hence, gluten intolerant).

My questions :

Do you think his symptoms could be related to gluten sensitivity, even if he hasn’t lost weight and doesn’t have diarrhea? YES YES YES

Is the antigliadine test specific for celiac or will it be positive even if he has another form of gluten sensitivity? If his test for celiac comes back negative, are there other ways to test for other forms of gluten sensitivity? (I don’t want him to go through the biopsy. I’ve read many posts about Enterolab here : is this controversial or is it generally recognised as reliable? Can they tell if he has a gluten problem other than celiac?) See above.

The biopsy to some, is controversial. It is the standard way to get a 100% diagnosis. I've had three and they honestly are not bad at all. You are not under general anethesia...just a heavy sedation that makes you fall asleep. Its like a 10 min procedure or something...very quick. Enterolab is highly controversial. Honestly, I would first try the traditional route because it would make life easier in the long run. Many (including myself, for other food intolerances) have turned to enterolab.

I was thinking of trying a gluten free diet for a year, just to see if it might help him, even if his test is negative. Do you think it would be a good idea? I don’t want to torture him (us) needlessly, so if some of you who have experience with celiac think it is unlikely to be a gluten problem, I won’t do it. But I’m willing to try it if there’s a slight chance it might help him. Well, you don't need a doctor's diagnosis to put him on a gluten free diet. That will be up to you. It might be well worth it to try. BUT, do NOT do it before you complete your bloodwork/potential biopsy. You HAVE to be eating gluten for them to be accurate.

But since he has no diarrhea, how would I know if he is improving? Would one year be sufficient to see an improvement in his weight gain? Or in his concentration? If he has positive blood work/positive biopsy, and goes on the gluten free diet, his antibody levels will decrease and go back to normal ranges (well, that is how it is supposed to work!). that would be an indication. Plus, he would hopefully start to grow and you would see other positive changes.

We were thinking of putting the whole family on this gluten free diet, just to make sure there is no cross-contamination. And it might also help my other son who has severe asthma. I read elsewere that asthma symptoms sometimes diminish on a gluten free diet. Is this true??? Has someone experienced this? I’ve also had undiagnosed (despite a year of tests) intestinal problems for the last 15 years. I do not think it is celiac, as my symptoms do not match, but I’m willing to give the diet a try, maybe it will help? It certainly can't hurt. But, there are very easy ways to keep things separate. It depends on each family. Some go entirely gluten free, some just have decreased gluten products and have designated shelves (and separate condiments that are dipped in, like Peanut Butter, Mayo, dips, etc), etc. It is a personal decision.

I would appreciate so much if some of you have tips, or similar experiences to share. And please tell me if you think I’m mistaken, and if you feel my son’s symptoms do not correspond to a gluten problem. I think you are doing the right thing by investigating this.

Two important notes:

Make sure that the full Celiac blood panel is run. Many doctors only run one or two tests. Make sure (I can't emphasize this enough) that you have the full one done! Sometimes all are positive, sometimes only one or two...but it is important to do them all, for that reason. Click on this link Open Original Shared Link for the tests. It is from a leading Celiac researcher, Dr. Fasano, at the University Of Maryland at Baltimore.

I highly recommend Dr. Peter Green's recent book, "Celiac Disease: A Hidden Epidemic"---it will answer SO SO SO SO very many of your questions. It is an invaluable resource. You can order it on amazon and many borders/barnes and nobles have them. I think it would help you so much.

I hope this briefly answers some of your questions. Good luck. Where are you located, by the way? You might want to switch doctors and find one that is educated about Celiac.

Nancy,

I just posted and tried to use italics on what I wrote. Apparently I didn't do too well...and some of the italics are yours. Either way, I hope it helps. PM me if you want to talk.

have a good night and either way, I hope you find answers.

[AndreaB]

Welcome!

It is a possibility that your son has celiac/gluten sensitivity. Definately get the whole celiac panel done (5 tests). It would be a good idea if you could get the test done too.

I had my family tested through enterolab after being gluten light myself for 1 1/2 months. We all tested on the low positive side with enterolab, but we all have at least one celiac gene.

You can go gluten free without any official diagnosis. It really comes down to personal choice if you test negative through the blood panel.

[Ursa Major]

Hi Nancy, and welcome to this board. You have a lot of good questions. When I look at the combined symptoms of both your sons and yourself, it makes even more sense to think it might be celiac disease (or gluten sensitivity). Since it is genetic, it obviously will effect different members of the family, but will not necessarily cause the same outward symptoms.

It would be good to get yourself tested as well as your kids. It is more likely to get false negatives with children than adults. If you test positive, I'd just assume that your kids need to be gluten-free, too.

I used to get excruciating 'growing pains' as a child (of course, there is really no such thing, it's a myth that growing should hurt), one little problem: They never stopped until I stopped eating gluten a year ago, at the age of 52.

I also had very severe, life-threatening asthma as a child (it is not as bad now, and has improved even more being gluten-free). Lack of growth in children is a classic celiac disease symptom. As is somewhat autistic behaviour.

I had a lot of energy when I was really little, and only started to look sickly (and be as skinny as a stick) from the age of three or four.

If all the conventional testing shows nothing, I think it would be a great idea to try the gluten-free diet for a year, and to get the testing from Enterolab done. You don't have to eat gluten for those tests, and they're highly reliable (much more sensitive than the conventional testing).

As somebody who is the only one who is gluten-free in my family, I can tell you that for me it is a nightmare to have everybody eat stuff I can't have all around me, and to leave crumbs all over the house, contaminate my keyboard and everything else around here. I KNOW I get glutened regularly because of it. So, I think for you to have the whole family be gluten-free for a year is a great idea.

Also, there won't be the constant temptation to cheat. If the stuff isn't in the house, you're not likely to cheat.

[GFBetsy]

I don't really have a lot to add to the other answers. I just wanted to say welcome to the board. Your son's problems could easily be related to food intolerances, but there may be something else going on. My sister's daughter recently tested negative for celiac, but the doctor did find that her Thyroid levels were very high, and her Human Growth Hormone levels were quite low (thus the skinny/short body). I think that having his blood work re-done is a wise idea, and going gluten free is unlikely to harm him or your family. And it may help you find the solutions you are looking for. Just keep in mind that celiac is not the only possibility. Good luck!

[Guest nini]

I wanted to say welcome and that YES your son could very well be gluten intolerant. Is it Celiac? Maybe, maybe not. Is it gluten intolerance? Maybe, maybe not. Is it something else? Don't know. It sounds very much like your son could have a problem with gluten, the easiest way (and yes it is easy) to find out is to try the diet. Give it a good six months effort and see how all of your families health responds. Keep accurate food journals and keep track of any improvement of symptoms or lack of improvement. If you all go gluten-free it will not affect OTHER testing for OTHER health concerns. The gluten-free diet will ONLY AFFECT the results of Celiac specific testing. If you and the rest of your family are comfortable with trying the diet, you do not need a medical Dr.s permission to stay gluten-free if it works. And if it works, guess what? you have your answers! If it doesn't, then keep searching. Health is a puzzle, and gluten may or may not be part of your families puzzle but it certainly sounds like it could be.

I don't put a lot of faith in the blood tests or biopsies, they are only looking for the gastrointestinal manifestations of Celiac and not the neurological, emotional or other manifestations of gluten intolerance/celiac.

I say just try the diet and see if it helps, also since you mention possible autistic or add tendencies you might want to try eliminating casein (dairy protein) from his diet as well until you figure out if it's going to help. Or you can just try gluten-free first then after a while try taking casein out too and keep track of what (if anything) happens.

[GFBetsy]

Totally Agree with Nini. Good job!

[Nantzie]

Hi Nancy! (I'm Nancy too!)

Your English is perfect by the way. I never would have guessed English was your second language.

Since putting my son gluten-free, he is a completely different kid. I never thought about autism much with him. But that was just because he acted just like the kids on my side of the family act. Not unsocial, not especially shy, just quiet. He was just like I was as a kid. He was slightly serious, more likely to watch kids play for a while before joining in (but would join on his own). When we took him to the park, his sister would run straight for the playground, whereas he would look at the bark on the trees, crouch down and look at the grass, want to walk around and just look at stuff and explore. It warmed my heart because he reminded me so, so much of my father, and of the stories I heard about myself as a very young child. After a while of doing that, he was off to the playground with his sister and the other kids.

In our town we have a drop-in hourly daycare called KidsPark. My family and friends all work during the day, so my babysitting options are none, other then KidsPark. So my kids go there a couple times a week while I go to appointments or run errands. So they see my kids more than their grandparents do.

About 2-3 weeks after putting Mikey gluten-free, the teachers there started telling me that Mikey was interacting SO MUCH MORE than he ever did. The one teacher that is almost always there with them was just stunned and the first time she told me this she had tears in her eyes. He used to play a little bit, but his favorite thing was just sitting and looking at the books. After being gluten-free for just a few weeks he was going and doing the little games and dances right next to the teachers, which he NEVER did before.

He's been gluten-free for about 2-3 months now, and he's gotten to be down-right goofy sometimes. It's so funny to watch. The other day, he was running around with a Cheeto sticking out of his lips for about 15 minutes just because he seemed to think it was pretty funny. Just silly.

I also used to have to tell my daughter to leave my son alone for a while after he woke up because he would be cranky for about an hour after he got up. If she came at him right away, he would cry. Now, when he wakes up, he runs straight for her and wants to play.

If we have cartoons on now, and the characters are dancing or running or doing anything active really, he pulls me over and wants me to do it with them. He giggles and dances and spins around. It's the coolest thing in the world.

It makes me shake my head in amazement. Something I thought was just a character trait in my family was somehow related to gluten. I never would have connected it or questioned it unless I had put him gluten-free. I don't think I ever would have brought up autism with his doctor because although he wasn't the most social child, he enjoyed socializing once he got comfortable in a situation.

Everyone reacts differently to gluten though. Sometimes social traits are related to gluten and sometimes they're not.

With his symptoms, putting your son gluten-free to see what happens is a good idea. It's a pretty healthy way to eat too, since fast food and frozen food are mostly not gluten-free. It couldn't hurt to try, and may end up helping more than you may have originally thought.

Glad you found us here.

Nancy

[TCA]

Just wanted to say welcome and let you know that your son's symptoms could definately be gluten related. You never know until you try the diet, though.

I've never had D, but do have a problem with indigestion. I also had the terrible leg pains as a child that were called growing pains, but I still had them at 29. They were getting much worse too. I went gluten-free for my daughter whom I was nursing at the time. After a couple months I noticed I wasn't hurting anymore and my asthma was better. I started checking into it and found out it was probably because of the gluten. I think your idea of a diet trial is great. Kudos to you for being so determined to help your son!

[nan55]

First, forgive me for not answering sooner. But I avidly read all your answers!

Thank you, all of you, for taking time to share your knowledge and experiences.

I've only first heard about celiac disease two weeks ago, and I've learned a lot since then, specially thanks to this forum.

I was really torn about wether or not we should try going gluten free, even without a diagnosis, but your replies are helping me to make a more " informed " decision.

I have pretty much decided that even if the tests are negative (we will only know in another week), we will try the gluten free diet for a year to see if there is any improvement. I'm trying very hard not to get my hopes up too much. But I keep my fingers crossed : it would be so great to finally be able to do something to help him!!!

Nancy

the only question i can really answer is the one about your son not having weight gain or diarrea...i never had any classic symptoms like that either. i never had diarrea or the constipation that some people get, i didn't lose or gain weight i have always been a healthy weight.

Thank you for confirming that it's possible to have a gluten intolerance without digestive symptoms! This is all so new to me!

Nancy

Testing in young children is not that reliable nor is it always reliable in adults. You can never have a false positive on the blood test, but you can have a false negative. Do you know if your doctor did the whole panel of 5 tests?

I don't think they did 5 tests. Before he was 2 years old, he did have antigliadin and transglutaminase tests, and they were both negative. He just got tested again, but only for antigliadin. As I said, the doctor is sceptical he has celiac, she only agreed to the test to put my mind at ease. I didn't know enough then to ask for this panel of 5 tests. (I still don't understand what these differents tests screen for... I still have a lot of reading/learning to do!)

I think the doctor told me the antigliadine test is the least specific test, and if he has celiac or something related to gluten sensitivity, it should show up in that test??? And then, if he tests positive for that, then she would order something more specific? I'm still so confused about these tests...

Nancy

[nan55]

Thank you, Happygirl, for your detailed answer!

Thanks specially for explaining that a negative anemia test does not necessarily mean no gluten sensitivity. I was wondering how he could have a malabsorption problem like celiac and not have anemia. I do not have the results yet, but I won't be as puzzled if the tests come back negative, Thanks!

Thank you for the link with the tests explanation. I've read it a few times (I'm still not understandind everything!), but I might bring a copy to my doctor next time I see her!

Thanks also for the book reference. I went to the library last weekend and was pleasantly surprised to see a lot of books about gluten-free cooking (I borrowed most of them!) But there were no books about the disease itself, so I will probably buy the one you recommended.

Where are you located, by the way? You might want to switch doctors and find one that is educated about Celiac.

I'm in Canada, in the Montreal region. Presently, there is a severe doctor shortage. I'm told I'm very lucky to have a doctor for my sons (I cannot find any for me), so unfortunately, looking for a more knowledgeable doctor is not really an option right now! But if anyone knows of a doctor or a clinic more familiar with celiac in the region that agrees to take new patients, I would appreciate any suggestion!

Nancy

I used to get excruciating 'growing pains' as a child (of course, there is really no such thing, it's a myth that growing should hurt), one little problem: They never stopped until I stopped eating gluten a year ago, at the age of 52.

I also had very severe, life-threatening asthma as a child (it is not as bad now, and has improved even more being gluten-free). Lack of growth in children is a classic celiac disease symptom. As is somewhat autistic behaviour.

Thanks, Ursula, for your answer!

I’ve finally decided that we will try the gluten free diet for a year. I’m hoping to start in mid-november, to give me time to learn more before taking the plunge, and to organise myself and my kitchen. After reading more about the specifics of gluten free diet, I’m slowly getting more comfortable with the idea.

My son has leg pains like you did, and they seem very painful. He has an unusually high tolerance for pain (barely cries when he hurts himself, didn’t even flinch when they drew blood for the tests) but when he has legs pains at night, I find him sobbing and squirming from the pain, so I know it must be severe. A few times, during the day, he was limping, and unable to clim the stairs due to the pain. Thankfuly, this doesn’t happen every day, and the medication is very effective. But it would be great if those pains went away on the gluten free diet!

You also say you have asthma, and it improved when you became gluten free? Really, that would be amazing if my other son’s asthma was to improve when we try the gluten free diet. That’s one of the reasons that decided me to put the whole family on this diet. I really can’t see the connection between gluten and asthma, but testimonies like yours convince me that I have nothing to loose by trying it! I’m trying not to get my hopes up to much, but I’m more than willing to be pleasantly surprised!

Nancy

I don't really have a lot to add to the other answers. I just wanted to say welcome to the board. Your son's problems could easily be related to food intolerances, but there may be something else going on.

(...)

Just keep in mind that celiac is not the only possibility. Good luck!

Thank you for pointing that out!

But when my son was little (before he was 2) he did have every test imaginable (hormones, thyroid, cystic fibrosis and a lot I don’t remember) to see why he was not gaining any weight. We went to the hospital for a different test almost every week, for a few months. All the results were negative.

At that time, I reluctantly accepted the fact that he would not develop fully, because I didn’t know what else to do.

Only recently did I learn that it could be gluten related, even if he has very few symptoms. That’s why I’m a little excited at the propect of being able to do something to try to help him! But at the same time, I don’t want to do something as radical as the gluten free diet just because I’m desperate to do something to help him. (I’m not sure if I’m making any sense here! )

After reading the comments from all the nice people on this board, I think that there are enough hints that his problem may be gluten related. I will try the gluten free diet for a year, to see if there is any improvement. If there isn’t, at least I will know I at least tried everything I could!

Nancy

I say just try the diet and see if it helps, also since you mention possible autistic or add tendencies you might want to try eliminating casein (dairy protein) from his diet as well until you figure out if it's going to help. Or you can just try gluten-free first then after a while try taking casein out too and keep track of what (if anything) happens.

Thank you for your advice!

I will try to read further about this casein intolerance.

I must admit I am a little puzzled by all the different food intolerances I see mentioned on this board. How do you identify what foods to watch out for??? I still am a little aprehensive about just going gluten free, I can’t even imagine what it must be like for those who have multiple intolerances.

I guess I will take it one step at a time, and start with gluten, but I will certainly read more and watch out for other possible intolerances.

(Sincere thanks also for your " Newbie survival kit "!!!)

Nancy

Since putting my son gluten-free, he is a completely different kid. I never thought about autism much with him. But that was just because he acted just like the kids on my side of the family act. Not unsocial, not especially shy, just quiet. He was just like I was as a kid. He was slightly serious, more likely to watch kids play for a while before joining in (but would join on his own).

About 2-3 weeks after putting Mikey gluten-free, the teachers there started telling me that Mikey was interacting SO MUCH MORE than he ever did.

He's been gluten-free for about 2-3 months now, and he's gotten to be down-right goofy sometimes. It's so funny to watch.

It makes me shake my head in amazement. Something I thought was just a character trait in my family was somehow related to gluten. I never would have connected it or questioned it unless I had put him gluten-free.

Nancy, thank you for sharing your son’s story with me! I see so many behavior similarities with my son!!!

I’m so glad that your little boy bloomed like that. I had tears in my eyes when I read your description of how he acts now. To think that something as simple as a diet change can make that kind of difference!

I’m preparing myself to start the gluten-free diet in a couple of weeks. I’m trying to go into this with not too much expectations, but I cannot help but wish my son’s health and behavior improves like yours did.

Thanks!

Nancy (2)