Ah Ha Moment With My Son? Or Grasping At Straws?

[sodakgal]

First of all, I just want to say that I really appreciate all the great advice, and fascinating stories on this forum. I am totally intrigued by everything everyone has to say. Second of all, I am a new poster, and am mostly a lurker, but will try to participate as I get more comfortable with this disease. Most of you are such experts! Here is my story, sorry it is so long.

I was diagnosed with celiac about 2 months ago via blood test, I am 38 years old. I believe my Celiac was triggered by one of my pregnancies, and have only felt ill for about a year (also had a miscarriage during that year as well). I have been gluten free for a month and a half. I have an appointment with a G.I. this Monday, and will go to the appointment, but am not sure if I will get a endoscopy. I feel so much better on the diet, and not sure I want the expense of an endoscopy.

Meanwhile, my son is going through some medical issues all his own. It started last year (1st grade) he developed a very distracting tick which for him is basically blinking really hard and often. He also started to get really constipated (dr. suggests Mirlax for that, we don't use it very often, after he had a accident at school). He also started to really not pay attention in class. He sits and stares in class, and the teacher can

[mushroom]

Hello, and welcome.

Yes, you could well be on to it. Sounds very familiar. Your should ask the neurologist if he would also run the celiac panel on him, but in the meantime, I'm afraid you should put him back on gluten or the testing will be negative. You need to eat a full gluten diet up to the time of testing.

[T.H.]

Definitely could be - see if the doctor knows anything about gluten ataxia.

However...if he is having neurological problems on gluten, here's the problem: current thinking is that damage done by gluten to the nervous system can be permanent. His current issues seem like those that resolve, but if there is further damage that you are not aware of - numbness and tingling in the extremities is one, for example. But with neuro issues, the docs often say keep them off gluten NOW and be very strict on the diet, because of the possibility of irreversible damage if they stay on. ESPECIALLY if you've already taken him off? I would honestly not put him back on.

There is definitely differing opinions on this, I'm afraid, but the fainting thing - honestly, my own thought on his is that if gluten is causing him this much trouble, it's not worth potentially more physical damage just to get a positive test. But as an aside - your normal doctor should be able to write you up a sheet for a celiac blood panel ASAP. I just had to call and say I was diagnosed and wanted my kids to have the test - they didn't even have to go in. We just picked up the paperwork and had the blood drawn. A couple days shouldn't affect the results, usually.

But I would seriously call up the neurologist's office and see if he/she is familiar with gluten ataxia. If he is not, see if he's willing to learn, and if not - get a new one, because he might not be of use for your son.

[eatmeat4good]

I think you are absolutely right about gluten possibly causing your son's problems. My son's whole childhood disappeared in a gluten fog. I had no idea what was wrong but I knew something was terribly wrong. He was 6 when it started and 16 when I figured it out. Dr.'s refused to test him saying he didn't have classic celiac symptoms. (This was at 16 when he had gluten ataxia since age 6 mind you)Just remember gluten can be the cause whether he tests positive or not. And be thrilled that you figured it out. I hate knowing things could have been so much better for him all those years if I had only known. But he is thriving at 16. Perfectly normal walk now. No spacing out episodes. No fatigue and he said the other day that he now gets social cues he used to be oblivious to when he was on gluten.

So whether or not you test, and no matter what the results of those tests are, I want you to know that your suspicions as a mother may be absolutely correct regardless of the outcome of tests. I also want you to know that my son seems to be making a full recovery....I hope your son does too.

[sodakgal]

Yes, I am thrilled with this possibility! My mind is spinning to think that I possibly have been dealing with the effects of gluten most of my life, and now I have a chance to start my son on a different path. Wow! The interesting thing for me was that I think my body knew about my intolerance, because I have never liked bread, or pasta. I am sure I got my fair share of all of gluten in a given day, but I stayed away from most of it as a matter of being picky. I think it was my body's way of protecting me. So, for me, going on this diet was very easy.

I think I will get the blood test for my son asap. And prepare myself with info about Gluten ataxia when I talk to the neurologist. Even if it is negative, I will continue with the diet to see what happens. Right now it is too early to tell. He doesn't have any numbness or tingling, but he does get horrible pains in his joints sometimes, that I attributed to growing pains (which they could be I suppose). He is overall mostly a healthy kid, doesn't have stomach aches, or any of the normal Celiac symptoms.

Thanks for your responses. This is so exciting! I would much rather his problems be something we can take care of with a simple diet. WOW!!!!

[srall]

Everyone's replies were so eloquent...I don't have much to add, except when I saw your post I had to log on and say that my daughter had similar issues. Taking her off gluten/corn and dairy has been life changing. I also had an a-ha moment with her. I'd been gluten/dairy/corn free for about 5 months and even though my issues were resolving I was baffled about what could be going on with my daughter. We were at a school potluck right before a PTO meeting at which I had to get up and speak. My daughter ate a piece of cake and just crashed. She had the dead eyes, her stomach started cramping, she was literally passing out in my arms. I had to hold her (2nd grader) during my speech. This was in October and her pediatrician appt was in November. I looked at her that night and said, "Honey, you never have to feel this kind of pain again. I know we have to do to make you feel better RIGHT NOW." At that point I wasn't interested in waiting to hear what the doctor had to say. I just knew I was going to do everything in my power to take that pain away from her. It's been a life changing journey for both of us.

At the very least, trying a gluten free diet with your son won't hurt anything. I might just add that corn was a huge culprit for us too. It took a little longer to figure that out with her (just a couple of weeks) and dairy free too...stopped the last of the tummy upset.

Whew...sorry this got long. I just get so passionate about all of this, esp when kids are involved. Good luck.

[txplowgirl]

I can remember in grade school going out for recess and setting in the swings an all of a sudden waking up from a trance like state and recess would be over and the schoolyard empty, or sitting in class and getting this numb feeling where I couldn't move. I could see and hear things but it was like I was behind a glass wall, sounds were muffled. I always called these episodes my zone outs. I've been told these are gluten seizures. There is a video on utube about this little boy who has these types of zone outs. he tests negative on the blood tests and endoscopy and does not have any other gluten symptoms but these seizures. Just like I use to have. It is wild.

And wouldn't you know it, I went to post you a link and the video has been deleted. I really wished they had kept that one on there.

[sodakgal]

Got goosebumps when I read your responses. Wow!! Just wow! So... after 2 days on g.f. with my son, he had a great b.m. (sorry... gross... sorry...) His behavior today all day was unbelievably angelic. I am so anxious to see how is attention span at school is in a couple of weeks. Thank you for your awesome responses!!!!!

[Medusa]

This is my first ever post here, but I feel I have to add my support - my 11 year old daughter has also had similar problems, to the extent that her previous school were insisting that she had learning difficulties as opposed to coeliac disease - she just seemed to drift off, almost like petit mal epilepsy. As they didn't take her diet seriously, mistakes were made and she ended up munching her way through a great plate of regular pasta one day. A couple of hours later she passed out, suffered severe convulsions and was rushed to hospital in an ambulance. She was out for hours, and I honestly didn't know if she would ever wake up. She eventually came round, very woozy and disorientated, with a terrible headache. She had violent stomach pains and bloody diarrhoea for the next couple of days. CAT scans, EEGs and ECGs showed no abnormalities, and we were left none the wiser, though I felt certain her collapse must be linked to the heavy gluten exposure. We have had a couple of milder attacks since, almost always linked to accidental exposure to gluten and/or extreme tiredness/stress. They seem to be really severe migraines triggered by the gluten exposure, she has a visual aura beforehand - we too had been down the eye test/dyslexia route, as she had complained of problems reading - the words start to float around, she sees zig zag lines, naproxen makes the symptoms much milder if we can get it into her in time. Having talked to my parents about it, it turns out that my father (also coeliac) has had similar episodes, though they had never connected it with his condition. The specialists here in Sweden claim they have never heard of any such complications with coeliac disease, so it's a huge relief to me to find I'm not alone! I wouldn't put my kids back on gluten for anything, they are different people on a gluten free diet. I'm also a teacher, and I find myself wondering now how may of the behavioural/learning problems I encounter in school are diet related. Best of luck!

[domesticactivist]

YES!!! We figured out my (10.5 year old) son most likely is Celiac and started him gluten free last fall then started the GAPS Diet. The amazing side effect of this process is that in just a few months he went from barely recognizing letters to reading on an 8th grade level! His hyperactivity resolved, too.

Our daughter has Tourette's and has had lots of tics. When we took the whole family off gluten, her tics got suddenly worse, then mostly went away. Her spaciness went away for the most part, too. Both kids have attention issues that are mostly resolved now. My neurological issues and anxiety went away, too.

We noticed that when we reintroduced fruits the tics came back and attention problems did, too. We introduced mineral drops with great success. Processing sugar takes a lot of magnesium, which many people are deficient in. The drops help with that.

I've posted links to our story and blogs on a couple other posts, so I don't want it to get flagged as spam. I think you can find our story if you google The Liberated Kitchen. There are a couple other people using that name, but we're the ones "transforming home & garden for healthy living."

[Medusa]

I forgot to mention - co-enzyme Q10 seems to reduce the frequency of my daughter's migraines and helps her stay focused. Might be worth a try. I keep her calcium and magnesium topped up too, not least in the hopes of helping her fragile teeth.

[Takala]

You are definitely on to something.

However, if the kid is off gluten for a while, and they want to test him, he may not show up the proper levels of antibodies on the blood test. This can also happen anyway, even if he is eating gluten, the blood tests are not always accurate in small children (or even adults.) The important thing is not to get frustrated. If after making a good faith effort to get medical diagnosing and rule out other conditions, if your child really does better on a gluten free diet, it is okay to have him or her on a gluten free diet.

I gently disagree with the above poster who said that neurological damage may be permanent if the damage is caused by gluten. I went off of grains in my mid forties and have slowly continued to improve, years later, even as far as adding gluten free grains back into my diet.

I would give you the laundry list of what symptoms but why attempt to frighten anybody further.

The strangest thing is regaining a lot of my night vision. This still surprises me when I am out at night, sometimes I look around, or I'll be driving, and I can see a lot more than I have been able to in the past, and I'll think "oh!"

I have had really different results with neuros. One I saw decades ago was very good, while giving me bad news, and was in excellent communication with the primary care doctor I had at the time, whom did me a great deal of good by getting me on physical therapy to compensate for the problems I definitely had (but as to the real reason, it was thought at the time to just be a strange sort of arthritis and unspecified auto immune crap, as the MS test was negative. So many tests, so many flunks... ). The second one I saw years ago, I refer to as the Neuro from ****™ , whose initial examination showed that yes, I did have physical problems with balance, coordination, vision, numbness, etc, but who ignored everything I told her and then strung me along for a year testing for everything else, and finally told me I was a head case with nothing wrong with me, after trying to hide test results from me by canceling appointments. No relationship between food and symptoms. pfffttt. (I went and got those test results anyway, and at the last appt she didn't know I knew. ) Of course I had the bright spots by this time and at first I'm like, ohmyG*d, I'm going to die with a swiss cheese brain! I have since gotten over myself.

[sodakgal]

We've had another "fainting" spell (although I don't technically think it is fainting.) The school called today a bit after lunch and told me that my son came into the office, and told them that while he was watching a movie in class, he was also seeing circles in front of his eyes. I am not sure why, but he fell off of his chair. I think he was describing migraine auras. I picked him up, and took him home for the day, and right now he seems fine. The last time this happened he ended up with a pretty bad migraine the next day, and it lasted most of the day. He spent the entire day in his room sleeping, and if we talked even a little to loudly, he would get really irritated.

I am still convinced it is food related, but he hasn't had gluten in a few days, except he had a communion host at Mass on Sunday. For lunch he had: Turkey, Cheese stick, Fruit snacks, Yogurt, and a couple of strawberries. So, I am thinking it was the cheese stick? I have heard cheese is a trigger, but I still want to cut out the gluten too.

Kendrea

[srall]

It may have been gluten exposure, but keep in mind a lot of people get crazy gluten withdrawal symptoms. I didn't notice it too much in my own daughter, but mine were bizarre. He's really only been off a couple of days. And maybe he does have something else going on, and of course you will explore that I'm sure, but I still believe trying a gluten free diet for awhile is worth the experiment. Esp since you've noticed some behavior changes.