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Doctor Appointment Shocker


Ridgewalker

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Ridgewalker Contributor

Ok, so some of you know the issues I've been having with Ezra, my younger son. But here's a quick recap, and I'll try to make this short!

He started pre-school in August and has been sick ever since, but not with anything contagious- it's been sinus infections, coughing, post nasal drippage, and most recently, pneumonia. He also has been having more and more poopy accidents, every day. This has become a complete re-run of what I went through with my older son, Lucas.

Another issue with Ezra (and I didn't use to consider this a "symptom" but I do now) has been temper. This has been building up for at least 2 years or longer, getting worse and worse and worse. Now, it's at the point, where the merest whisper of the word "No" sets off an uncontrollable kicking, screaming, sobbing fit. Since school started, this has gotten worse yet.

What's different since school started? Well, since May, he had been I'd say, about 95% gluten-free-- he eats what his brother eats, and Lucas if strictly gluten-free. At school, he eats actual wheat products at breakfast, lunch and snacktime. Major increase!

Ezra's preschool class is called More @ 4-- it's a North Carolina state funded program, and no food substitutions can be made without a doctor's order. Well, We don't have insurance, and cannot afford testing for anyone at this time. Even Lucas has not been tested-- and I don't even feel it's necessary since every health problem he had has cleared up since going gluten-free! Before yesterday, I hadn't even mentioned gluten-free diets to our family doctor... I guess out of fear of not being taken seriously, even though this doc was the one who initially sent my Mom to a GI because she (doc) suspected Celiac.

I've taken a lot of flak from some friends (and even my hubby, a little bit) about jumping onto gluten-free diet bandwagons, etc... No one denies that Lucas has Celiac or gluten intolerance, because anyone who knows him can see how much better he is now, though. I was right that time, why don't they trust me now?! Anyways, that's tangential.

So I decided to take Ez back to the doctor yesterday, and come clean about Luke being gluten-free, and see what she thought about trying it with Ezra, too. I was scared, but I thought there was a chance she might write the orders for school without formal testing. kbtoys here suggested it- I hadn't considered it before (thank you!)

So now we come to the actual doctor's appointment. Good news is that she was very receptive to trying Ezra on a gluten-free diet! She had no problem writing out the orders for school, and was very encouraging.

The other thing, though... Oh man.

She said that from everything I've described to her about Ezra's increasing uncontrollable temper, bordering on rage... and from everything she personally has seen his behavior during his visits with her... that I also need to consider the possibility of Bipolar Disorder. Apparently this is something that she's been considering for a little bit. Both the kids have seen her since birth, and now most of my family sees her too- she knows us fairly well.

Well, my jaw hit the floor. She told me, Don't freak out, even if it is the case, a gluten-free diet may help. Then she went on to tell me about all the behavior disorders that parents have seen improvement in on a gluten-free diet. (I had already read about everything she was telling me, but it was an unbelievable relief to find out how Gluten-Literate she is... I felt dumb for being scared, and not trusting her before :( We've been going to her for years, I should've known her better than that.) But she said for me to read up on it, do some research, and see what I thought. Because if is Bipolar, he'll need medication, as early as possible.

Well, no matter what anybody says, I DID freak out. I just kept thinking, NOT my BABY! My baby cannot be on mind altering medication for the rest of his life! Not my sweet baby!

So far, I've only done a little bit of preliminary reading, and I'm starting to feel a little better. I have a lot more research to do, but so far, I don't think this quite fits Ezra. I really believe that going on a gluten-free diet is going to help him a lot. Bipolar disorder wouldn't explain his poop problems, or the constant illnesses, but Celiac explains everything.

If he is Bipolar, I'll deal with it, and I'll do what I have to do for him. But I'll be damned if I'm not going to try everything else first before putting a 4 year old on Bipolar medication!

-Sarah

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buffettbride Enthusiast

(((Sarah)))

Wow. That is some news. I'm glad you were able to get doctor's orders to go gluten free with Ezra. Does this mean he'll be able to eat gluten-free at school, too? I think first and foremost I'd see if 100% gluten free will make a difference (and I will cross my fingers that it will!!!). Maybe it is as simple as that!

I know what you mean about people thinking you're weird for jumping on the gluten-free bandwagon. I would have thought I was a freak a year ago too!

Even if he is bipolar there are SO many things you can do without medication to work with him. Being aware of it could really make a big difference on how you are able to manage his fits and working with the school on consequences of unacceptable behavior and being consistent at school/home.

I've noticed especially with my son who is 3 1/2 (and not diagnosed w/ anything except peanut allergy so far), we had a long adjustment period when it came to preschool. He's the kind of kid when you give him an inch he takes a mile so we really have to clamp down on the rules with him and follow them to the letter at home and at school. If not, he just walks all over us and his teachers and is a royal pain in the butt! Not quite to the point of fits of rage, but we have to be very regimented and consistent with him or it is meltdown city.

Is there any chance he could be a little jealous of your other son because he gets attention because of his Celiac and maybe his fits are his way of getting attention? I catch myself obsessing about gluten sometimes, for sure! My daughter even gets tired of hearing about it.

I wish you the best of luck in whatever you find out!

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Fiddle-Faddle Community Regular

I think it is possible that going off gluten might completely eliminate bipolar tendencies in a child. There is an Indian doctor who has published a few studies definitively linking bipolar and gluten.

I have also read of studies linking caffeine and bipolar. By any chance, might you have drunk coffee while either pregnant with him and/or nursing him?

You might want to limit or even ban chocolate for a little while, as that does contain caffeine. I assume you don't let him drink caffeinated beverages? (Ya gotta read labels for caffeine, too--some root beers and creme sodas actually have caffeine added! :ph34r: )

Is the Feingold diet something worth trying? I think that one also eliminates sugar, artificial colors, and--is it lectins?

I would only consider meds as a last resort--if you don't try dietary measures first, you'll never know what foods or additives might be involved, and the meds might be covering up symptoms but the root cause might still be there...

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crittermom Enthusiast

I would only consider meds as a last resort--if you don't try dietary measures first, you'll never know what foods or additives might be involved, and the meds might be covering up symptoms but the root cause might still be there...

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2kids4me Contributor

I like your doctor for the fact that she does seem to know a lot about the positive benefits of going gluten free. She doesnt dismiss or require proof of celiac. I think she likely mentioned it becasue if he does fit the criteria for bipolar and doesnt mention it then she is not a good doctor.

What I am hearing in your email is that she agees that the diet should be tried first..and that meds are only a possibility if it becomes clear that he is bipolar.... I think she only mentioned it because isf she didnt but has suspicioisn....then later when things got worse...she says: Oh, I had suspicions about that but,..... then we'd be upset with her for not bringing it up

anyways...definitely go gluten-free and listen to other adivce about foods. I remember a few years ago ..I think it was on 20/20... about rages in children triggered by food and the difficulty parents had convincing medical peole that it was food related. One video showed an engaging lovely boy - about 6 yrs old, interacting with the therapist.... then they fed him peas...yes peas... within minutes, his mood darkened, he became uncoopertaive and efforts to calm him were met witha chair flying through the room, then the boy crying and hiding under a chair. In his own words later "he scared himself"

Diet may be the answer and if you keep a diary of behavior (good and bad) along with what foods he ate...then maybe there will be clues.

Hope it goes well

Sandy

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Ridgewalker Contributor
(((Sarah)))

Wow. That is some news. I'm glad you were able to get doctor's orders to go gluten free with Ezra. Does this mean he'll be able to eat gluten-free at school, too? I think first and foremost I'd see if 100% gluten free will make a difference (and I will cross my fingers that it will!!!). Maybe it is as simple as that!

I know what you mean about people thinking you're weird for jumping on the gluten-free bandwagon. I would have thought I was a freak a year ago too!

Even if he is bipolar there are SO many things you can do without medication to work with him. Being aware of it could really make a big difference on how you are able to manage his fits and working with the school on consequences of unacceptable behavior and being consistent at school/home.

I've noticed especially with my son who is 3 1/2 (and not diagnosed w/ anything except peanut allergy so far), we had a long adjustment period when it came to preschool. He's the kind of kid when you give him an inch he takes a mile so we really have to clamp down on the rules with him and follow them to the letter at home and at school. If not, he just walks all over us and his teachers and is a royal pain in the butt! Not quite to the point of fits of rage, but we have to be very regimented and consistent with him or it is meltdown city.

Is there any chance he could be a little jealous of your other son because he gets attention because of his Celiac and maybe his fits are his way of getting attention? I catch myself obsessing about gluten sometimes, for sure! My daughter even gets tired of hearing about it.

I wish you the best of luck in whatever you find out!

Thank you so, so much for your good wishes- you don't know how much it means to me. I have to admit- and I would never admit this to anyone I know In Real Life... I am scared to death right now. Ok, I know, bipolar is a heck of a lot better than Cancer, but this is my BABY! You know what I mean, I know.

Celiac can be controlled with diet, and thank God for that! But psychological medication... oh man, I don't want to go there unless it was absolutely essential for his well-being!!! He's so young!

Yes, the doctor's orders will allow me to bring in his food from home. I would not be allowed to do this without the Dr orders. The preschool program has very strict rules about that, because if parents bring in a bunch of food substitutions then it messes with the state funding. As long as I have the doctor's orders, though, we'll be all right, no problem. Whew!

Ezra has definitely not been jealous of Luke's Celiac... if anything, he had the tendency to gloat every so often over those occasional Ritz crackers, etc. <_< which I had to stomp on (the attitude, not the crackers!) Ezra calls it "bluten" instead of gluten, which always makes me chuckle. Luckily his big brother is super laid-back and mellow.

Yes, Ezra has also had an adjustment period for preschool. He was one of those poor kids who screamed and sobbed and clung to Mommy every morning for weeks :( Which just nearly killed me. His school has cameras in every room, with a master display screen in the front foyer... I would spend a half hour or more, watching him on the tv every morning. Luckily, he is doing better with that. Still not happy when I say goodbye, but doing much better. (It's a neat system- they're also webcams, and I can sign in and watch him on the computer whenever I want. They didn't have all that when Lucas went there a few years ago!)

As for bipolar treatments... I haven't done much reading yet. Pretty much, just scouring symptom/red flag lists. So I am very glad to hear that there are non-medication treatments!!!!!! Don't get me wrong- I am all for medication for people who need it. I myself have taken an antidepressant, ever since Ezra was born, and I'm grateful that I have it! But he's four years old... I am just so reluctant to go down that road for him right now.

Also, what you said about routine and consistency- we could probably straighten up our daily routines and stick to them better as well. I'll work on that.

Thank you sooooo much again!!!

-Sarah

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Ridgewalker Contributor
I think it is possible that going off gluten might completely eliminate bipolar tendencies in a child. There is an Indian doctor who has published a few studies definitively linking bipolar and gluten.

I have also read of studies linking caffeine and bipolar. By any chance, might you have drunk coffee while either pregnant with him and/or nursing him?

You might want to limit or even ban chocolate for a little while, as that does contain caffeine. I assume you don't let him drink caffeinated beverages? (Ya gotta read labels for caffeine, too--some root beers and creme sodas actually have caffeine added! :ph34r: )

Is the Feingold diet something worth trying? I think that one also eliminates sugar, artificial colors, and--is it lectins?

I would only consider meds as a last resort--if you don't try dietary measures first, you'll never know what foods or additives might be involved, and the meds might be covering up symptoms but the root cause might still be there...

I have not read anything specifically linking bipolar and gluten, I will have to do a search! For a while now, I have been of the mind that many (if not all) ADHD kids are actually suffering from food intolerances. Hmm, I'll have to do some more reading! (Glad I'm going to be going into nursing school, all this research is going to help me out ;) )

As for caffeine, as a matter of fact I was caffeine free during both pregnancies. When I'm pregnant, caffeine gives me wicked horrible headaches. The kids only get soda once in awhile, and then it's Sprite about 1/2 the time. The other 1/2 it's diet Coke (I know the artificial sweeteners are bad :ph34r: It's what's in the house, because I live on it.) I'm kind of a Nazi about only letting them have 100% juice. They've never had Kool-aid in their lives! I will definitely keep a chocolate ban in mind, maybe in a few weeks, to give him time to settle into being gluten-free.

I will look up the Feingold diet. I've seen it mentioned on here a few times, but I don't really know much about it.

Thank you so much for your encouragement! I, too, think of meds as a last resort!!!

-Sarah

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Ridgewalker Contributor
I would only consider meds as a last resort--if you don't try dietary measures first, you'll never know what foods or additives might be involved, and the meds might be covering up symptoms but the root cause might still be there...

Abosolutely!

I am so sorry to hear your news. You are right, no matter what the doctors tell you, you are mom and you will freak. Last year I went through a lukemia scare with my son. Everyone said, don't freak until you have an answer....yeah right. It was negative thank goodness.

Anyway, the point of my response... I have a good friend whose son goes ABSOLUTELY CRAZY when he has anything with red dye in it. Apparently the red dye is a fairly common problem in kids, I had never even thought of it before my friend told me. She had heard of it and tried taking him off all red dyed foods, this consisted mainly of treats and snacks. Then one day her mom gave him the breast cancer awareness M&M's (they are all shades of red and pink) and he was off the wall for a couple of days. Terrible behavior, agressive, mischevious and destructive. Then once it cleared out of his system he was fine. She wanted to make sure it wasn't a fluke so she gave him a snack with red dye in it and the same thing happened. She had her answer and their house is red dye free! He can still be mischevious (he played tic tac toe on the side of her new car with rocks) but is not as aggressive or defiant. Good luck and I will hope that the gluten-free diet is your answer!

Ohhhh my God, I can't even imagine having to go through a leukemia scare. You must have been terrified! There is no way you WOULDN'T freak!

I have heard of the red dye problem! In fact, Ezra's preschool teachers discourage red drinks during birthday/holiday parties (i.e. red gatorade, red Hi-C, etc) because it tends to make all the kids hyper! :o And this is just in general, not kids that have a sensitivity to it the way your friend's son has!

Your story is heartening!!! I think that even if cutting out gluten doesn't seem to help him, I'm going to keep searching, and doing elimination experiments. Now that I have our doctor's orders that I must be allowed to bring in Ezra's food, I have the control to figure this out. I am very relieved about that.

I was actually considering pulling him out of school for the sole purpose of having complete control over his diet. But I did NOT want to do that unless it was absolutely necessary. I feel like kids need some preparation before they start kindergarten. (Kindergarten is a bit more intense than it was when I was a kid! Back then, it was 1/2 day- mostly coloring and listening to stories! Now it's reading, writing, homework everynight and sit still... sheesh.)

-Sarah

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Ridgewalker Contributor
I like your doctor for the fact that she does seem to know a lot about the positive benefits of going gluten free. She doesnt dismiss or require proof of celiac. I think she likely mentioned it becasue if he does fit the criteria for bipolar and doesnt mention it then she is not a good doctor.

What I am hearing in your email is that she agees that the diet should be tried first..and that meds are only a possibility if it becomes clear that he is bipolar.... I think she only mentioned it because isf she didnt but has suspicioisn....then later when things got worse...she says: Oh, I had suspicions about that but,..... then we'd be upset with her for not bringing it up

anyways...definitely go gluten-free and listen to other adivce about foods. I remember a few years ago ..I think it was on 20/20... about rages in children triggered by food and the difficulty parents had convincing medical peole that it was food related. One video showed an engaging lovely boy - about 6 yrs old, interacting with the therapist.... then they fed him peas...yes peas... within minutes, his mood darkened, he became uncoopertaive and efforts to calm him were met witha chair flying through the room, then the boy crying and hiding under a chair. In his own words later "he scared himself"

Diet may be the answer and if you keep a diary of behavior (good and bad) along with what foods he ate...then maybe there will be clues.

Hope it goes well

Sandy

I'm glad you like our doctor, she really has been absolutely wonderful, ever since I first met her. Back then, she was in an office that had several doctors, and I just happened to be lucky enough that she was the doc I got when I made the first check-up appointment for newborn Lucas. She walked in, took one look at my face, and asked how I was doing. Which, I immediately burst into sobs- I could be a poster child for postpartum depression. And this complete stranger walked up and gave me a big long hug, stroked my hair like she was my big sister. We've followed her to her own private practice, and I can't imagine going to anyone else.

And like you said, she doesn't dismiss my ideas and thoughts... that is SO important!!! I feel extremely lucky. I found out a couple months ago, when my mom was talking to her about a possible casein intolerance, that she herself (doc) has been intolerant to casein since childhood. And I know one of her sons doesn't eat bread or pasta- he hates it. She believes there is a reason for that, and allows him to go with it. She is also a firm believer is a natural, meat/fruit/vegetables diet.

She is the kind of doctor who will trade stories about your/her kids, and actually cares. Frankly, I should not have waited so long to talk to her about this!

Your story about the child who had a reaction to peas astonished me, I have to admit! I wouldn't have thought something so natural would cause a reaction like that- and I will keep it in mind! The food and behavior diary is an excellent idea, and I will start one for him tomorrow. I can even take it with me next time we go to the doctor.

Thank you for the well wishes!

-Sarah

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gfpaperdoll Rookie

I will be VERY surprised if all of your sons problems do not disappear with food restrictions. I think gluten-free will be major improvement, & like some of the others said, you might have to eliminate things like artificial colors, and definitely no artificial sugar, which means no chewing gum, it is in all gum, & no toothpaste, artificial sugar is in all toothpste. The dentists now say that children should brush with water & floss. I use baking soda...

I do not eat M&M's for the very reason that they have all that color additive... (well now I cannot even eat chocolate...)

I hope you also eliminate dairy - which really affects the brain...

I think that most all bipolar is just a gluten problem in disguise. check out the doctors that are working on gluten ataxia, and gluten intolerance and the effect that it is having with seizures, ADHD, ADD, Dyslexia, Depression, all these things are known to be common in the people with DQ1 or DQ3, & check the threads on here about the double DQ1 people, we have all the neurological problems in addition to other things. Some people only have an angry rage when they are glutened, nothing else - but within about 20 to 30 minutes a huge spell of angry behaviour, this can be dangerous...

I would say to just make your family gluten-free & DF & additive free etc & see what happens...

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Centa Newbie

Hello, Ridgewalker

I was married to a man who is bipolar. I'd urge you to take your time and trust your doctor to make the diagnosis of bipolarism or not. It sounds like she's a thoughtful diagnostician. She will guide you concerning the relation of bipolarism to gluten tolerance.

It must have been shocking to hear that your doc was considering bipolarism as a possibility. If after removing gluten the doctor does further testing and the diagnosis is bipolarism, I'd urge you to follow the treatment that the doctor prescribes faithfully.

It's been well documented that untreated bipolarism gets worse. It's very important not to delay beginning medication if that's the diagnosis, and for the bipolar take the medication regularly. Untreated bipolarism can be very disturbing to the person suffering from it. I can't stress this enough. You wouldn't want your kiddo to go through those tough times.

Although there often is some counseling, to help the newly diagnosed bipolar learn how to handle the moods, my husband's longterm treatment amounted to taking a pill or two a day, and that was it. He was on lithium when I met him, and his doctor switched him to valproic acid, which did a better job of giving him an even mood. The meds are mood stabilizers (not mood suppressers). People can lead very satisfying, long lives as bipolars, despite stereotypes of mental illness that other people have.

Having said all that, I do hope its what you hope it is: that your child's moods are due to gluten. And what about sugar and sweets?

If you do research bipolarism, I was so helped by the writing of Kay Redfield Jamison. She is a bipolar and specializes in it, so she knows what she's talking about both medically and in terms of experiencing it.

I like the fact that your doc is taking it step by step, and seeing how no-gluten helps your child, first.

All best,

Centa

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Ridgewalker Contributor

Centa, gfpaperdoll, thank you so much. Will edit to reply tomorrow. I'm so exhausted, I can barely think right now, but will write back tomorrow!

-Sarah

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ravenwoodglass Mentor

I hope the diet helps your son. I also hope they do not rush to medicate your child. Bipolar is a very popular diagnosis nowadays, I only wish doctors looked for gluten problems as diligently as they do this new 'disease of the month'. Sorry if that sounds cynical but with my families history it is hard to avoid. It used to be thought that depression and bipolar tendencies run in my family, in truth they don't gluten intolerance does. We went through hell when my children were younger and we also went through a pharmacopia of drugs attempting to help with these conditions. Some of those drugs had some very scarey and almost fatal effects on the them because..... we were not mentally ill we were physically ill with celiac. Or you could say that we were mentally ill with a physical cause.

ALL of my family members have seen a resolution of mental health issues, from depression to bipolar to autism spectrum (not cured but much much improved). I should also note that on the celiac blood panels the ones of us who showed positive, well all of them but me, had a low positive that some doctors would have called negative. They all tried the diet anyway because of the fact that I did not show up on blood testing. We have all had an astounding resolution of neurological problems that led to the previous diagnosis of 'mental illness' after going gluten free. DO NOT let them rush the bipolar diagnosis on your little one and especially do not let them medicate him until it is very clear that the diet does nothing to help. I agree that pulling him out of preschool is for the best until you have been able to have him on the diet long enough to know. CC issues in preschool abound from snack time crumbs to paint and clays, it would be really hard to tell if he is responding to the diet if he is in school without a diagnosis. Give the strictly followed diet at least a couple of months although I think once gluten free you will see a difference really quickly. Your doctor will likely see a different child on the next visit and it may open her eyes to testing or suggesting the diet to other familys that are suffering the effects of this neurotoxin before a mental illness is added to their medical history.

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Nikki'smom Apprentice

Sarah,

WOw I can't imagine how taken back you where by your dr mentioning Biopolr! I would be just as terrified and scared as i can imagine you are. I am sure you will do what ever is needed to help Ezra. Is that your little Darth Vader?

That is great about your dr being so knowlagable! I know I feel blessed to have some great drs and I love hearing about other great drs.

Right now just take everything with a grain of salt put him on a gluten-free diet and if he makes great strides then you ahve your answers. Then I would just monitor him and keep the biopolor in the abck of your mind and look for signs.

One of the other posters mentioned red dye making a child go 'wild' when my DD was smaller orange juice used to make her litterly change from a loving sweet kid to a real night mare she would be angry and nasty and just not the same kid! It was the oddest thing! I should have clued in right there how food can change your mood and affect your body.

Hang in there and just know we are here to support you during this next step ;)

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2kids4me Contributor

I found this - it is an easy to read site and set up well:

Open Original Shared Link

an exerpt:

Food and food components found to have an effect on behavior

Salicylates. Most commonly implicated

Preservatives

Nitrates (also used as preservatives)

Amines

MSG (flavor enhancer)

Tartrazine (synthetic food coloring)

Antioxidants

Brewers yeast

Lactose (milk sugar)

Benzoates

Synthetic colourings and flavourings

Food intolerance occurs in 5-10% of the population and frequently goes unrecognised. It appears to be an exaggerated response of nerve endings in the brain in genetically susceptible individuals (Loblay, 1986). Neurotransmitters (chemicals responsible for brain function) such as serotonin, dopamine and norepinephrine are made in the body from the food we eat. Tryptophan, an amino acid found in protein foods is converted into serotonin a

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DingoGirl Enthusiast

Hi Sarah!

I cannot stress enough how STRONGLY I urge you to avoid medications for Ezra! This is an issue that causes huge anger in me. There was, just last week, a program devoted to this very subject - bipolar disorder in children (20/20 or Dateline?) and how doctors are wildly diagnosing bipolar disease in TWO year olds. It's an outrage.

I myself am/was bipolar, very near death or suicide, not sure which - - my story is long and excruciating. By removing gluten, nearly two years ago, ALL SYMPTOMS GRADUALLY DISAPPEARED. I now take a very low dose of a maintenance antidepressant (plan to be fully off it someday) and a VERY low dose of Seroquel at night for sleep. I have been on every drug you can imagine, and spent at least half my life, cumulatively, wanting to kill myslef. I wish to God that I had known, or SOMEone had known, to remove gluten from my poor brain decades ago.

The good news is - you CAN do that for your son!! Keep him off gluten, keep him (both of them) on pure, unprocessed foods, and I'm pretty sure they'll thrive. bipolar disease historically manifests itself in the late teens and early twenties, and now, doctors will diganose this condition for the "terrible twos." IT IS AN OUTRAGE. They are willing to do this because it's far easier than researching a gluten-free diet, or endorsing something that doesn't require a treatment pushed by pharmaceutical companies.

(sorry for the rant - you can see I have very strong opinions on this! :ph34r: )

I spent my entire childhood in a fog or a crying rage......medications started at age 20.....but then began all the wild ups and downs of mania. If only....if only.....I could have had the quieted brain that absence of gluten provides.......

Part of my life's campaign, in fact, is trying to get the word out about gluten removal (or at least wheat removal) and mental health. Ask anyone who knows me - the change is beyond astonishing......

I haven't even read all of the responses to your post, will do that later when there's more time, but I just wanted to write this......putting kids on these strong meds at such an early age I think can cause untold changes in neuropathways and brain chemistry........which may definitely not be good.

Hang in there. You're on the right track.

:)

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DingoGirl Enthusiast
I hope the diet helps your son. I also hope they do not rush to medicate your child. Bipolar is a very popular diagnosis nowadays, I only wish doctors looked for gluten problems as diligently as they do this new 'disease of the month'.

I can't agree more with the above.

Also, recently there ahve been several Oprah shows dealing wtih bipolar disorder, and Dr. Jamison has been a guest (I read her book years ago). I felt like screaming - - she virtually NEVER suggests anything but medication and a good shrink for bipolar disease, and says it can take years and years for improvement - - nothing about diet, exercise, removal of alcohol (for adults obviously) etc. etc. I think she's a good physician, just has never looked outside the box of medication for treatment. I am writing her a letter (not a rant, mind you, a nice, calm letter ;)) - I've written to Oprah, Dr. Oz, Patty Duke (who was on the other day).....her letter's next. I am just SO intensely frustrated that there aren't more mental health professionals endorsing a wheat- or gluten-free diet.

I firmly believe NEARLY ALL of children's mood and thinking issues (ADD, ADHD, etc) can be almost completely reversed, if not totally reversed, with a gluten-free, pure diet. (possible dairy- or caseine-free as well).......but instead doctors immediately write prescription after prescription for medications that have startling results. (ADD drugs are the WORST - I've taken all of them.)

end of rant :huh:

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Ridgewalker Contributor
I will be VERY surprised if all of your sons problems do not disappear with food restrictions. I think gluten-free will be major improvement, & like some of the others said, you might have to eliminate things like artificial colors, and definitely no artificial sugar, which means no chewing gum, it is in all gum, & no toothpaste, artificial sugar is in all toothpste. The dentists now say that children should brush with water & floss. I use baking soda...

I do not eat M&M's for the very reason that they have all that color additive... (well now I cannot even eat chocolate...)

I hope you also eliminate dairy - which really affects the brain...

I think that most all bipolar is just a gluten problem in disguise. check out the doctors that are working on gluten ataxia, and gluten intolerance and the effect that it is having with seizures, ADHD, ADD, Dyslexia, Depression, all these things are known to be common in the people with DQ1 or DQ3, & check the threads on here about the double DQ1 people, we have all the neurological problems in addition to other things. Some people only have an angry rage when they are glutened, nothing else - but within about 20 to 30 minutes a huge spell of angry behaviour, this can be dangerous...

I would say to just make your family gluten-free & DF & additive free etc & see what happens...

Thank you for the heads-up on some things to research! It really helps to have somewhere to start.

The only gluten-y thing in our house now is bread- my husband still eats regular bread- and that's it. Over time, I've phased everything else out of our house.

I've been thinking about dairy, and there is one big reason why I'm not taking Ezra dairy free yet. He doesn't eat dairy every day- he'll go 2 or 3 days without it, and then pig out on it. Like yogurt, 4 pieces of cheese in a row, milk, etc. all in one day. While this is odd, it definitely does not seem to affect him adversely. I've noticed no increase in symptoms- physical or emotional- on the heavy dairy days, or the day after.

So I'm holding off on that for now, but I'm keeping it in mind. The food/symptom diary should help make that possibility even clearer, one way or another! Thank you!

-Sarah

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Ridgewalker Contributor
It must have been shocking to hear that your doc was considering bipolarism as a possibility. If after removing gluten the doctor does further testing and the diagnosis is bipolarism, I'd urge you to follow the treatment that the doctor prescribes faithfully.

It's been well documented that untreated bipolarism gets worse. It's very important not to delay beginning medication if that's the diagnosis, and for the bipolar take the medication regularly. Untreated bipolarism can be very disturbing to the person suffering from it. I can't stress this enough. You wouldn't want your kiddo to go through those tough times.

This is a very good point. I really appreciate you sharing your experience with me! I assure you that no matter what happens, I'll never allow him to just go untreated... In fact, I'll never give up until he's as healthy and happy as possible.

I am just so extremely reluctant to medicate him at age four... it would have to be an absolute last resort. But I try not to ever rule out, or close my mind, to options.

-Sarah

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Ridgewalker Contributor
DO NOT let them rush the bipolar diagnosis on your little one and especially do not let them medicate him until it is very clear that the diet does nothing to help. I agree that pulling him out of preschool is for the best until you have been able to have him on the diet long enough to know. CC issues in preschool abound from snack time crumbs to paint and clays, it would be really hard to tell if he is responding to the diet if he is in school without a diagnosis.

I agree (and incidently, my husband and I are on the same page with this)- medication would be the last resort. With Celiac in my family, gluten is the first obvious thing to try removing. I have a feeling it's going to help him a lot. But if it doesn't, I'm going to keep trying different things, different eliminations... until I've either figured it out, or there's nothing left!

I don't want to pull him out of preschool if I don't have to- he gets so much out of it, I would hate to take that away if I can help it. We'll just have to see what happens. Since I'm bringing in all his food, CC in the kitchen shouldn't be an issue, but you're right-- CC at the table, with all the kids eating together... well it gets messy.

I'll mention it to his teachers in the morning, but things are hectic in the mornings, so I'll also schedule a sit-down meeting about it. I may also sit in at lunchtime a couple days this week- that may help a lot, both for him and his teachers.

-Sarah

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Ridgewalker Contributor
Right now just take everything with a grain of salt put him on a gluten-free diet and if he makes great strides then you ahve your answers. Then I would just monitor him and keep the biopolor in the abck of your mind and look for signs.

One of the other posters mentioned red dye making a child go 'wild' when my DD was smaller orange juice used to make her litterly change from a loving sweet kid to a real night mare she would be angry and nasty and just not the same kid! It was the oddest thing! I should have clued in right there how food can change your mood and affect your body.

Hang in there and just know we are here to support you during this next step ;)

That's pretty much what I've decided on- I'm keeping bipolar disorder in mind, and I'm going to do some more reading, but for right now... I'm going to explore dietary change before anything else!

That is amazing about the orange juice-- I'm not used to thinking that even such innocuous foods as peas and orange juice can cause these types of reactions! I guess, truly anything can cause a reaction- it simply depends on the individual.

This makes the prospect of trying to figure out what might be hurting Ezra even more daunting, but I feel a thousand times better prepared for it now. Largely due to the ideas, theories, and experiences I've read about here! I've learned a lot here, not to mention all the bits and pieces I've read about, that have sent me off on a new research tangent. I can't even imagine what my response and actions might have been if this had come up a year ago. I would have been so unprepared to handle it.

Thank you!

-Sarah

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Ridgewalker Contributor
The good news is - you CAN do that for your son!! Keep him off gluten, keep him (both of them) on pure, unprocessed foods, and I'm pretty sure they'll thrive. bipolar disease historically manifests itself in the late teens and early twenties, and now, doctors will diganose this condition for the "terrible twos." IT IS AN OUTRAGE. They are willing to do this because it's far easier than researching a gluten-free diet, or endorsing something that doesn't require a treatment pushed by pharmaceutical companies.

(sorry for the rant - you can see I have very strong opinions on this! ph34r.gif )

I spent my entire childhood in a fog or a crying rage......medications started at age 20.....but then began all the wild ups and downs of mania. If only....if only.....I could have had the quieted brain that absence of gluten provides.......

............

I firmly believe NEARLY ALL of children's mood and thinking issues (ADD, ADHD, etc) can be almost completely reversed, if not totally reversed, with a gluten-free, pure diet. (possible dairy- or caseine-free as well).......but instead doctors immediately write prescription after prescription for medications that have startling results. (ADD drugs are the WORST - I've taken all of them.)

Susie, I am so, so glad to hear from you about this! I had no idea that you were diagnosed bipolar. For years now, I have been very skeptical about whether ADD and ADHD even exist (I hesitate to ever say so- I would absolutely hate to offend someone or hurt anyone's feelings) but I have believed that it was some kind of dietary or environmental problem(s).

Do you think you should ever have been diagnosed bipolar? Or do you think your problems were/are completely due to Celiac? What age did your symptoms begin? Did you have the emotional symptoms at a young age? I'm sorry if these are a lot of questions, I'm just, well really worried, obviously! We can PM about it if you'd prefer.

When I was 12 years old, I was diagnosed with social anxiety disorder. Prozac was the first in a long line of antidepressants and tranquilizers that I took for the next ten years. Things seemed to even out for awhile then, but after Ezra was born, I went on Effexor, which I've been happy with... but I don't know if I still should be on it. I really don't know. I don't want to stop taking it, because any time I forget to take it it even for a day, I get extremely sick. I haven't had time to deal with withdrawal!!!

Lately, especially since I've gone gluten-free myself, I've wondered if I've had problems with gluten since childhood. I was diagnosed with soc. anx. disorder because of things like nervousness, excessive fatigue, daily stomach pain and diarrhea! Talk about things that make you go Hmm...

While I don't let myself rule out possibilities, I believe in my heart that Ezra's problems will resolve with dietary change. I feel that gluten is the most likely culprit, considering his symptoms and family history. And I can't even express how strongly I feel that medication must be an absolute last resort!!! He's only four years old... just a baby.

Thank you so much for your responses- they mean the world to me!

-Sarah

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kbtoyssni Contributor

I'm so glad that your doctor was willing to write a note to the school without official testing! I also agree with everyone about the bipolor - many celiacs on gluten sure as heck seem bipolor but are just fine after going gluten-free. I'd be very surprised if it actually were bipolor. And if it is bipolor, Ezra's in a good situation - he's got a mother who's willing to look at non-traditional treatments and do her research. If it does come to that, there are many non-drug things you can do to ease symptoms (like sticking to a consistent schedule, having a consistent bedtime, eating frequently and healthily - really it's all about consistency with bipolor).

I'm looking forward to hearing how the little guy does now that he'll be going gluten-free.

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Centa Newbie

Here's an article on the rOpen Original Shared Link and the iffyness of the diagnostic criteria used to examine quite small children, that will contribute to the discussion in this thread.

[Oh, rats. I just doublechecked the post. Boston.com wants people to register. Well, you can if you like get it from the net with the title "Backlash on bipolar diagnoses in children

MGH psychiatrist's work stirs debate" By Scott Allen, Globe Staff | June 17, 2007]

It mentions that until recently, the onset age for bipolarism was presumed to be late teens or early twenties. My husband was diagnosed at about 24. He is a true bipolar, not a misdiagnosed one; his episodes of mania and depression weren't triggered by diet but by things like stress, lack of sleep or the time of the year (spring and fall were particularly disruptive to him). I just checked; those turn out to be some of the Open Original Shared Link. If someone would think to question what I've just said about diet and his bipolarism, he was a foodie, and furthermore had problems with elevated triglycerides that we were trying to improve with food choices and cooking at home, so we both were very attentive to diet and noticed befores and afters, and diet wasn't what set one of his episodes off.

In fact, I'll bet the different triggers are the key to separating the two diagnoses...

Ridgewalker, you have a lot of people caring and cheering for you and your son. All best.

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Juliebove Rising Star

Sorry to hear that.

My daughter does not have celiac, but she does have food allergies, including wheat and gluten. We didn't learn of the allergies until the end of 2nd grade. Prior to that, she didn't act out in school, but she sure did at home! She could not be told "no" or put in "time out". She'd freak out and get totally out of control. Luckly, most of the time she was well behaved so we didn't have to do it often.

The school thought she had ADHD though because she was sometimes figety and couldn't listen or pay attention to anything. Homework was horrible. She wouldn't "get" something and any attempt to help her to understand caused her to scream and yell. She did not like to be told that she was doing something wrong.

Since changing her diet, she is a changed child. But all it takes is a speck of gluten, a drop of milk, or anything else she is allergic to and she is out of control again.

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