Neurological Disorders Associated With Celiac?

[cyan1117]

I am very curious about something that I have seen here on the boards. A few posts mention that Celiac has neurological effects? What? I have a 9 y/o daughter that has been diagnosed as Bipolar, and ADHD. This journey started when she was 18 months old and started having tantrums, normal at this age but the severity is what I questioned. She would get so upset at even a simple "No you can't touch the hot stove" that we would put her in the bathtub because after 20 minutes she was going to puke. The rage in this child is not constant but absolutely an issue. She now has two younger half brothers ages (2 & 3) and we have caught her kicking them full force in the face just for coming into her room. Now I did ask last year for her pediatrician to run a "Celiac Panel" and I will be honest in saying that I don't know the numbers, Dr. said that they came back normal and that was the end of it. I asked for the Panel because at the time they were looking at my 2 y/o (then 11 months) for Celiac and a whole host of other things. I had read that there could be neurological side effects of Celiac so I asked for the panel.

Ok so my dd continued to have problems with tantrums, mood swings, and rage so over the years I must have taken her to 3 or 4 different therapists who all told me that she just needs more discipline. Please understand, I am not a weenie. My children absolutely get disciplined. I was so frustrated at this by the time she was in Kindergarten that I just gave up and decided that it really must just be me (I even started seeing a therapist to find out what was wrong with me) like her pediatrician suspected. After thinking that I was nuts for a couple of years and her deteriorating moods and more severe tantrums we started having problems in school last year right away in September. She was having severe issues with her peers, problems with attention, and noticable mood swings even in school. Last August it had gotten so bad that I literally was ready to send her to live with my parents because I was going to have a nervous breakdown if things didn't change. I cannot even describe how bad it was in my house at that point.

Last year we switched pediatricians in August and at her first visit with them I told the Dr about all of the behavior issues that she was having and he thought that maybe another therapist should take a look at her. So we scheduled yet another visit. A few weeks into school she started experiencing blurry vision and upset stomachs. New Dr couldn't figure it out, eye Dr saw nothing wrong, off to the Neurologist we went. This guy literally has saved my life. After spending two hours with us he asked if I had ever heard of Bipolar Disorder. I really didn't know much about it but he was convinced that was what we were dealing with. He wanted to run some tests to rule out other things so we did that. Everything ok.

Since Bipolar is such a huge diagnosis I decided that I wanted to find a Psychiatrist that deals with children and had experience with Bipolar. That in itself is a long story but we finally found one and after months of "getting to know" her and I he agrees that it is Bipolar. A year later and after me not wanting to medicate and then reluctantly trying she is on two medications which are helping with her ADHD symptoms in school and has made some difference in the severity of her mood swings. She is by no means back to normal if there is such a thing. She is the nastiest child I have ever been around, but I will be the first to admit that she is the worst with me. The Psychiatrist says this is all normal for Bipolar.

So here is my celiac question....could celiac cause these types of symptoms? I know it's probably a stretch since her labs were normal but you guys are really making me wonder.

To give you some family background I recently had elevated IgA levels, but IgG and tTG were normal range. GI Dr still thinks Celiac is a possibility and is doing biopsies on Jan 4th. I have noticed that when I eat wheat my nose stuffs up, I get a weird sensation in my ears (like when you fly and have to pop them) and ususally have to run to the bathroom within 20 minutes due to cramping and having to go. Had Gallbladder removed last year due to stones after my son was born. Many wierd labs that we can't explain at this point (Creatinine Clearance, AST, ALT, Alkaline Phosphatase, Prothrombin Time). I went to GI Dr because of the liver enzyme elevation going back 10 years and the Metabolic Dr that I went to for something else thought that I should see GI. So nothing concrete for me but we are working on it.

My 2 y/o son has had GI issues since birth, started with projectile vomiting, he turned blue a few times, and after being told that it was Colic (ugghh) a Dr finally diagnosed Reflux. We did see some improvement right away on Zantac but he has had issues with Diahhrea since we started solids. He was classified FTT around this time as well because his weight went from 50%tile to below 0%tile in a couple of months. His GI Dr wanted biopsies last year due to the severity of his Reflux and everything else. They didn't find anything out of the ordinary but did note some Intramucosal Lymphocytes (?). At the time he was having biopsy done he had been pretty much pooping out his food completely undigested and does have a slightly distended belly, not severe though. He also tested as having severe Pancreatic Insufficiency at that time. Enzymes helped for the few weeks that he was on them but Dr discontinued them because there was some doubt about the Panreatic stimulation test due to elevated pH of the sample. GI Dr decides that biopsies are "inconclusive" and basically tells me that he isn't growning because I must not be feeding him. She sends us to a nutritionist who has us track his food intake. After three days of journaling she calls to tell us that he is eating more calories than he should need so there is no reason for his weight loss. She puts him on Resource Just for Kids 1.5 (super charged Pediasure basically) and he immediately gets even worse with the Diahhrea. This goes on for 6 months, he finally gains some weight and is back on the growth charts at 18 month check up. During the 6 months he is literally eating over 2400 calories a day! and we decided to try regular Pediasure to see if the D gets better. It doesn't. His bowels are never quite normal, always either pale or very dark (almost black), always watery/looking shiny, and extremely foul. He is off the pediasure now because his weight seems to have stabilized. At this point I am having a celiac panel re-run on him because when they ran it prior to his biopsy it was a little off but not to the point she was concerned.

I guess what it comes down to is I just don't know what's going on with all of us, but suspect it may be Celiac.

[Guest nini]

Gluten Intolerance does not always manifest with gastrointestinal symptoms and therefore the typical testing looking for Celiac is not going to find it, even with gastrointestinal symptoms the testing can often miss early stages of the disease. Absolutely YES this can cause the neurological symptoms you describe, and my suggestion would be that regardless of what any testing shows, positive dietary response is a way more valid diagnostic tool, and it is definitely worth it to try the diet with your whole family and see if it helps. Yes your whole family. That will make it easier than worrying about cross contamination issues at home anyway. You can do this without buying a lot of the gluten-free specialty products as well... just stick with foods that are naturally gluten free. One of my daughters most disturbing symptoms when she was 3 were these HORRIBLE tantrums that were violent and scary, she was completely out of control and would thrash about on the floor (couldn't stand to be held) she would kick, bite, hit, scream and then after a while she'd collapse in a sweaty heap on the floor just sobbing that she couldn't help it... it was heartbreaking to watch. Amazingly enough, these stopped within 3 days of removing gluten from her diet. Her blood tests were negative and we did not have a biopsy done but because I had recently been diagnosed myself, we got the pediatricians support in trying the diet. She had also had GERD since birth and diarrhea with horrible bloody rashes, failure to thrive, anemia, hypoglycemia, hive like rashes all over her body, and my mom said she had all the same symptoms that I had since I was a baby.

I wasn't diagnosed until I was 34, and all my life I've battled depression/anxiety disorders, violent outbursts (never diagnosed bipolar but I certainly suspect it in hindsight) as well as the gastrointestinal symptoms that would come and go. I spent my entire pre diagnosis life being told it was "all in my head" and I was just a hypochondriac as they couldn't find anything wrong with me. I am just so thankful to be able to prevent this from happening with my daughter. Since getting gluten out of her diet she has been such a happy child, well adjusted, and is absolutely thriving.

[Sarah8793]

Yes, Yes, Yes. In my family gluten affects our mood and causes anxiety in addition to some digestive problems. If you can't get answers through blood tests try removing it entirely from your kids diets and wait atleast 4 months before deciding if it is making a difference.

[happygirl]

There are articles in the recent "Living Without" magazine about celiac/gluten and neurological problems.

https://www.celiac.com/st_main.html?p_catid=7

check out the above link...might help some!

[eleep]

My late mother was diagnosed bipolar (I suspect mis-diagnosed since she was able to take Prozac towards the end of her life without swinging into mania), so I've always monitored myself for the symptoms. While I did have clear mood swings at times -- and decided swings into extreme fatigue or irritability, I really didn't think I could be bipolar because my "up" phases didn't really look like mania -- they were more like a sudden, inexplicable lapse into relieved normalcy. I had a couples counselor who thought I might be bipolar and in denial about it because I would get extremely frustrated with him when he'd ask me screening questions about mania. This was all shortly before or during my celiac diagnosis and, until I had the hard Enterolab proof and the ensuing proof of my increasing health on a gluten-free diet, I had to do a lot of patient waiting around while he kept that possibility open -- which meant that we were waiting to make a decision about putting me on medication for bipolar disorder.

Now, it's absolutely clear that my symptoms were all celiac-related. Given your daughter's age, it might be difficult to know exactly what's going on with her -- she may not be able to report to you about what she's feeling like internally with enough self-awareness and detail to know what might or might not be bipolar disorder.

eleep

[Budew]

I absolutely believe there is a link. I also think it is more than gluten because of personal experiences. I have been diagnosed bi-polar, psychotic, depressed, anxiety disorder, dyslexia. I have felt rage since childhood not to mention terrible dreams and fears. Since I have been eating a very restrictive diet I am excited to find that I no longer have any of these problems. Well I should qualify that, I am now noticing that my memory and concentration levels are improving but not completely back to normal. The other things just disappeared.

[Nancym]

There's a link between many mental disorders and celiac disease. I think if you click on The Gluten File in my signature you'll see quite a lot of information about this.

[Ursa Major]

I agree with Nini, putting the whole family on a gluten-free diet is the best way of finding out if all of you are experiencing symptoms of celiac disease. I suspect that your son, your daughter and you are all gluten intolerant, with the intolerance manifesting in different ways.

Here is a link to Scott's blog. Scroll down to yesterday's entry, titled "Gluten causes brain disease!" Open Original Shared Link

[Adelle]

I can't tell you what to do, but I can tell u what I did.

I'm 22, I've been dx'd major depressive disorder, bipolar, borderline personality disorder, etc etc. I used to vomit from emotions so intense my body felt like it was going to explode.

4 months ago I went gluten-free. I don't feel 100% better, I still have strong emotions, but (hope this isn't too graphic) I'm not cutting anymore (which I'd been doing to stop the vomitting for 11 years), I feel in control. My emotions are intense, but I'm handling them. I'm out of therapy, off meds, and doing better than I ever have.

Even tho my bloodwork came back "borderline normal" and I was told going gluten-free was a choice I could make, the difference is amazing.

I wish you so much luck. You are a wonderful mother. My mom gave up, I was just an "emotional child". The problem isn't YOU, you are a HUGE part of the solution. Remember that.

[celiacgirls]

I think there is a link. My daughter wasn't dx'ed with bipolar but she was diagnosed Oppositional Defiance Disorder and Depression. Her therapist and I thought she was on her way years down the road to being dx'ed bipolar. She was taking Lexapro and we were thinking we would need to change to or add a mood stabilizer. It was so bad in our house I was thinking she would need to go to a boarding school.

Around this time her sister was dx'ed by Enterolab after years of stomach issues, mild by celiac standards. I was told her problems were anxiety. We tested my older daughter with Enterolab and she was gluten and casein intolerant. We tried the diet and she is a different child unless she has had some gluten or casein. Thankfully, I am now able to see what a sweet child she is without all of that gluten. We've cut down her Lexapro to 1/2 the dose so far and she only goes to therapy once a month to keep in touch while we wean her off the Lexapro.

My daughter who had the stomach issues always had normal lab results with the regular blood tests, so I wouldn't let the normal blood test convince you that gluten isn't a problem. The only way to know for sure is to try it. You will need to be very strict and careful because even a tiny amount can cause emotional problems for my daughters and me. I could still feel the effects in myself (fatigue, lack of motivation, irritability) for 2 1/2 weeks after having some fries that had been cross contaminated.

This diet can be inconvenient at times, but it is so worth it to have my daughter's problems under control. I hope that it is as successful for you as it was for us.

[girlfromclare]

Wow you have had a tough ride havent you? I feel so sorry for you and can actually empathise with a lot of what you are saying... without going into my entire story, my son was quite similar, perhaps slightly less serious, with regard to mood swings, irrational behaviour, tantrums, crying, lashing out and general unhappiness until he went gluten free. Its only been a recent transition for us so health wise he has still to properly gain weight and is only just beginning to get colour back in his cheeks, but his moods are fantastic... no more crying!!! Its like a new child and the last four years are almost (almost but not ever easily forgotton) a distant memory... I can also empathise with your urges to just hand them over and run away somewhere and I too had the doctors tell me that perhaps discipline was an issue in our house etc etc and did I need to take parenting classes and was I just an emotional mess (because I kept crying in the docs surgery which didnt convince him of my own emotional strength) which I did have because I tried not to break down completely in front of my son in the past... althought sometimes it was impossible not to!! I know what you are saying and although we dont have the severity that you spoke of with your daughter, I have been there to some extent... please try the diet... negative blood results dont mean a whole lot... my son tested negative but has had the most amazing transformation on the diet... its worth it to try it and althought it worked for us in a matter of about three to five DAYS it may not work that quickly for you so give it a few months if you have to but if it brings out the beautiful sweet girl that you know in your heart is in there, then it will be entirely worth it... now of course im not suggesting that there isnt other issues with your daughter but like i said, the diet is accessible and do-able and if you do see results, then it is so worht it....

I wish you the very very best of luck and you will get lots of support here if you need it.

Liz (ireland)