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Childhood Apraxia Of Speech -- Gluten Or Possibly Casein Connectiton?

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Some friends whose son turned two a few months ago isn't really talking much. They took him in to be evaluated and they think he has Childhood Apraxia of Speech.

I'm wondering if there isn't a connection to gluten (of course, I think EVERY disorder has a connection to gluten, lol). He is very small for his age, had weird rashy stuff on his face/scalp for a long time after he was born (longer than the normal cradle cap/baby acne -- my son is a few months older so I was aware of that), and when he had a dirty diaper it absolutely STUNK. It smelled like the big D, but I never changed him so I don't know if he's had that issue. Oh, and despite being small for his age he's always been a big eater, pulling food off his parents' plates as a baby.

I love these people, but I have already suggested once that their son might have a food intolerance (because he is sweet and loving for a period of time and then BAM! he's pulling hair and pinching and hitting like a maniac) and I hate to harp on it. So if I make the comment I would like to have something to back it up, KWIM?

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Bear with me on this long post, there's a reason for telling such a story - to answer your post

This is long, I know, but there's a response here about getting your friends to trial the child to gluten-free before he's older.

Five years ago there was a special on 20/20 or 60 Minutes about Gluten Intolerance. This was the same time period that my middle daughter was almost 5, and doctors were considering whether she was in the Autism spectrum. She had severely delayed speech, talked and sounded like she was speaking Chinese, would have absolutely RANDOM tantrums, or spacy spells, or be extra lovey, for no reason WHATsoever. A close friend called me to tell me this special was on. The child they were describing on this Gluten Intolerance special was EXACTLY like my daughter. Call her Peanut2. After about 4 months of discussing with doctors, we finally found out the 'right' blood test of the time, and she tested positive. "It's a weak positive," I was told, and wasn't given much assurance that going gluten-free would really help her. They were sympathetic like they would be if I was dealing with a severely MR child and in denial. Well, at that point, Peanut2 was pretty sad off. Peanut2's behavior resolved within about three months of going gluten-free. Her stools straightened out, her speech TOOK OFF, and she is now a fairly well adjusted (though still extremely ...independent) young lady.

I let us stop the gluten-free diet when it seemed like maybe that wasn't really what the whole problem was after all. All four of us (three girls ages 4-8, and myself) went gluten-free but later doctors convinced me to try Miralax on one, Cerave on another, and liver medication and treatment for gastric paresis on me. Without a firm diagnosis I guess the willpower wore off, and I was told to do gluten-free if I felt like it, but there was no medical reason.

It's been almost two years eating normal again, and am I sick! I have fatty liver, thyroid issues, supposedly insulin resistance, chronic pain in my back and hips when I sleep. The mental confusion that crept up on me over the last few months, though, put me over the edge. I couldn't function at work. On a long-shot, I tried going gluten-free. Within a week EVERYTHING began to resolve. My weight has even started coming down (it had crept back up as my liver was starting to grow again).

Part of the confusion I mention is I can't get words out right. Sometimes I pick the wrong word, sometimes I garble the sounds. I also get quite agitated, irritable, and just plain pi$$t off. Forgetful, too.

What this has to do with Peanut2 is that I am now terrified that she may have a relapse, or worse. My relapse proves to me beyond any doubt that I have to stay gluten-free. Now what do I do for the girls? Peanut3 loves her pizza SO BAD (is a HUGE eater but slender. Another sign to suggest she should be gluten-free) and Peanut1 is a 12 year old strong-hearted, self-fulfilling, mother-knows-nothing girl that gets the 'plug-em-ups' but has already declared she'll never go gluten-free again. Like, hospitalizingly bad.

If your friends even think the child might need a gluten-free lifestyle, it doesn't hurt - and the benefits can be life changing for a child who is mentally, physically, behaviorally, and/or speech inflicted by Gluten Intolerance. I waited too long to get firm about living gluten-free, and it may be too late for the 12 year old. Peanut2 is young enough to persuade, but just barely.

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Some friends whose son turned two a few months ago isn't really talking much. They took him in to be evaluated and they think he has Childhood Apraxia of Speech.

I'm wondering if there isn't a connection to gluten (of course, I think EVERY disorder has a connection to gluten, lol). He is very small for his age, had weird rashy stuff on his face/scalp for a long time after he was born (longer than the normal cradle cap/baby acne -- my son is a few months older so I was aware of that), and when he had a dirty diaper it absolutely STUNK. It smelled like the big D, but I never changed him so I don't know if he's had that issue. Oh, and despite being small for his age he's always been a big eater, pulling food off his parents' plates as a baby.

I love these people, but I have already suggested once that their son might have a food intolerance (because he is sweet and loving for a period of time and then BAM! he's pulling hair and pinching and hitting like a maniac) and I hate to harp on it. So if I make the comment I would like to have something to back it up, KWIM?

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Thank you for sharing your story. It's tough when kids are older and just don't believe that food can really have such a big effect on you. My nephew is nineteen, has ADD and psoriasis and numerous other issues and I really think his problems are dietary in nature -- or at least that they could be much relieved by a change in diet. But he scoffs at his mother (my sister) who went gluten-free after I suggested her rash looked like dermatitis herpetiformis. Her rash AND migraines have subsided and she's convinced -- but her kids laugh at her.

Hopefully your daughters will figure it out sooner rather than later.

I did mention to my friends that a gluten intolerance could cause issues like their son has, but I can't do much more than that. The mother is a family practitioner, which I suppose could be good or bad. She's fairly open to new ideas, though.

Thanks again!

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Bear with me on this long post, there's a reason for telling such a story - to answer your post

This is long, I know, but there's a response here about getting your friends to trial the child to gluten-free before he's older.

Five years ago there was a special on 20/20 or 60 Minutes about Gluten Intolerance. This was the same time period that my middle daughter was almost 5, and doctors were considering whether she was in the Autism spectrum. She had severely delayed speech, talked and sounded like she was speaking Chinese, would have absolutely RANDOM tantrums, or spacy spells, or be extra lovey, for no reason WHATsoever. A close friend called me to tell me this special was on. The child they were describing on this Gluten Intolerance special was EXACTLY like my daughter. Call her Peanut2. After about 4 months of discussing with doctors, we finally found out the 'right' blood test of the time, and she tested positive. "It's a weak positive," I was told, and wasn't given much assurance that going gluten-free would really help her. They were sympathetic like they would be if I was dealing with a severely MR child and in denial. Well, at that point, Peanut2 was pretty sad off. Peanut2's behavior resolved within about three months of going gluten-free. Her stools straightened out, her speech TOOK OFF, and she is now a fairly well adjusted (though still extremely ...independent) young lady.

I let us stop the gluten-free diet when it seemed like maybe that wasn't really what the whole problem was after all. All four of us (three girls ages 4-8, and myself) went gluten-free but later doctors convinced me to try Miralax on one, Cerave on another, and liver medication and treatment for gastric paresis on me. Without a firm diagnosis I guess the willpower wore off, and I was told to do gluten-free if I felt like it, but there was no medical reason.

It's been almost two years eating normal again, and am I sick! I have fatty liver, thyroid issues, supposedly insulin resistance, chronic pain in my back and hips when I sleep. The mental confusion that crept up on me over the last few months, though, put me over the edge. I couldn't function at work. On a long-shot, I tried going gluten-free. Within a week EVERYTHING began to resolve. My weight has even started coming down (it had crept back up as my liver was starting to grow again).

Part of the confusion I mention is I can't get words out right. Sometimes I pick the wrong word, sometimes I garble the sounds. I also get quite agitated, irritable, and just plain pi$$t off. Forgetful, too.

What this has to do with Peanut2 is that I am now terrified that she may have a relapse, or worse. My relapse proves to me beyond any doubt that I have to stay gluten-free. Now what do I do for the girls? Peanut3 loves her pizza SO BAD (is a HUGE eater but slender. Another sign to suggest she should be gluten-free) and Peanut1 is a 12 year old strong-hearted, self-fulfilling, mother-knows-nothing girl that gets the 'plug-em-ups' but has already declared she'll never go gluten-free again. Like, hospitalizingly bad.

If your friends even think the child might need a gluten-free lifestyle, it doesn't hurt - and the benefits can be life changing for a child who is mentally, physically, behaviorally, and/or speech inflicted by Gluten Intolerance. I waited too long to get firm about living gluten-free, and it may be too late for the 12 year old. Peanut2 is young enough to persuade, but just barely.

You have made me realize this could be my baby girls whole problem.Thank you so much for writing this.Maybe now i know the problem why she is not potty trained and speech delayed and does sparatic mean spells.

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    • Hey!  I also recently started a gluten free diet because of non Celiac's gluten sensitivity, and as a college student who can't really eat in the dining hall or participate in late night pizza runs, I totally understand where you're coming from. First things first: you probably aren't as much of a burden on people as you think you are. They most likely understand that this is a big transition period for you and will take time. If you are really worried about it,  just talk to them, explain your concern and try to come up with a plan. I have found that if I don't make a big deal about being gluten free, neither will anyone else. The first time or two matter of factly explain that you cannot eat gluten for medical reasons, after that, if someone offers you something you can't eat, I have found it to be best to just respond with a simple "no thanks!" As far as making sure you don't starve, nut based granola bars (such as kind bars) are your best friend. I always try to have one or two handy, especially on trips! ( I like to have savory ones, like Thai chili flavored, that way it feel more like eating real food than sweet flavored ones!) That way, if there is really nothing you can eat, you always have something. I also scoured celiac and gluten free blogs my first few weeks and figured out what fast food places have Celiac's and NCGS friendly options (Chick-fil-A is a good one, I usually get their fries and request that they fry them in their designated gluten free frier, and a side salad, Wendy's is also good, you can get any of their baked potatoes, chili, or side salad with no croutons, there are a lot of other places too, but there are my favorites) I have found that a lot of times there are things that we can eat places, but because Celiac's and especially NCGS is something that has just started to get more attention, most people, even those working at restaurants just aren't familiar with it, and most restaurants do not have a designated gluten free menu. Your smart phone and Google are also great, I am all the time in a  restaurant googling "does (restaurant's dish) have  gluten?" Usually we can eat salads, and burgers and such without buns, but it is always a good idea to just tell your waiter or the person taking your order something to the effect of " hey! I am unable to eat gluten for medical reasons, which means I can't have things made with wheat, rye , or barley, or anything that touches things made with it, I was hoping to have (dish), Which isn't made with any of these things, but was wondering if you could use clean utensils and preparing area, that way I don't get sick! Thank you!" Usually people are more than happy to help, they just don't understand your situation. As far as you feeling like less of an outcast, this transition period has been a great time for me to realize the importance of hanging out with people and enjoying their company, even if you can't fully participate. No one really cares if they are all eating pizza and you are eating a sandwich you brought on gluten free bread. People are going to express concern because they care about you and don't want you to be hungry or feel left out. Whenever someone says something like " oh will you be able to eat anything here?" Or "oh I'm sorry I'm eating (delicious gluten thing)" just not making a big deal out of it and saying something like "oh I'm good anywhere!" (Because you are with your granola bar! Also you can almost always eat salad) Or "no, you enjoy what you like!" Will make you and them feel better. For a while you will feel a little left out, and that is okay, but I have found that I am so much happier when I go on that pizza run with my friends and a granola bar, even if at first you have to fake it till you make it! Good luck! I know it isn't easy, but it does get better!💙💙
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