Abnormal Mri 4.5 Post-Diagnosis

[nmlove]

This question is about my son but I thought perhaps I would get more response in the general celiac community vs the parenting forum as this deals with the brain, abnormal MRI possibly due to celiac (his GI doc thinking out loud to me).

 

I was an active member of this forum during my sons' first years after diagnosis but dropped off for a bit as life got busy and both my children seemed to deal well post-diagnosis.

 

Fast forward 4.5 years... My oldest son, now 9, continually has excellent lab work and shows no GI signs of ingesting gluten. So it seems all good. A little over a year ago, he started having these weird, short, strong headaches. I get migraines (it's familial) and because they were so random and brief (less than 15 minutes) and I was dealing with a period of bad migraines, I let it go.

 

Well, they got worse in August/September. Eventually I got him into the doctor (pediatrician) who continues to monitor him. Late fall he was anemic which he is back to normal now after supplementation. No scans done. Headaches stayed steady at 1-2x/week. They really seem like they're turning into migraines to me. When I brought up the headaches to his GI doctor, she was worried and suggested an MRI and EEG. No EEG done but we did do the MRI through the pediatrician's orders. It came back abnormal (unspecified white spots in the cerebellum possibly due to migraine). We've been waiting for the neurologist consult and so I'm researching. Oh, his last labs did show a vitamin d deficiency so he's on a mega-supplement (50K IU/week). He's had huge growth over the past year (8 inches! and like 2 pounds)

 

My questions...

 

1. I've seen much related to gluten ataxia but it seems like it is an issue pre-diagnosis or ill-management of the gluten-free diet. Could he be super sensitive to gluten neurologically but seem ok GI-wise and with labs?

 

2. Could gluten have caused irreversible brain damage pre-diagnosis and it's just now causing more problems? He was very obviously celiac once tested. He had very little physical signs but was tested on a fluke - or so I thought - and his labs were very high and his GI doctor saw obvious villi destruction during his endoscopy without even waiting for the biopsy. He was 4.5 at this time and just thinking about the nutrient deficiencies and issues during those critical growing years pains me. And it's so CRAZY to think how well he actually seemed. Well, except for the weird 8 months of odd things pre-diagnosis, but nothing that would have screamed celiac to me today knowing what celiac disease is.

 

Obviously, this may have nothing to do with gluten/celiac disease. I am merely looking for information. He is under medical supervision so I'm not looking to self-diagnose but I want to go in with some knowledge and good questions.

 

Thanks so much.

 

Nicole

[nvsmom]

I believe there are a few members that found abnormal "white spots" on their MRI due to ataxia. I think their doctors thought it could be ms but it proved to be celiac disease damage. I don't know much about this area but I would not be surprised if it was celiac disease related. I think it is smart of you to check into it fully though.

Hopefully someone else can give you better info. Best wishes.

[skullgrl]

I've been having some problems like this after going gluten-free. It was driving me insane, I had plateaued and was still feeling terrible while my anemia was still there a bit but otherwise it seemed I was recovering. I then read about gluten ataxia in a gluten-free magazine (Living Without I believe) and realized it described me to a T. Among the other usual ataxia symptoms I would also get stabby sudden headaches (which I noticed were markedly different from the migraines I get).

 

I have in the past 2-3 weeks gone completely processed food free. Nothing that is labelled gluten-free I use with two exceptions - GIG (Gluten Intolerance Group) Certified spices (from Spicely.com) and a few things from Nuts.com (taking care not to eat too much). I go with GIG certified things because they are tested down to 10PPM and they are actually active about checking. I know in Canada there were standards for the word gluten-free before the US (that new law, right?) but its not as if they have anyone checking, its only after complaints that items are recalled. I'm not sure how it is in the US (or elsewhere) but I know here if something is naturally gluten-free, they can label it gluten-free no matter what crazy stuff it touches on the way to you. 

 

I must say I've been doing a lot better and saw a really big improvement almost immediately. I was a little sceptical at first that trace amounts could be doing anything but I ran out of almond flour from nuts.com and picked up one labelled gluten-free at the store near me and after making pancakes with it I felt terrible all day and had a lot of neuro symptoms. 

 

I have an MRI scheduled soon and I can update you if I have any abnormalities. I finally got an appointment to get one; I started having seizures around January, which only happened a few times, thankfully.

 

Edit:

Rereading your questions I have a bit more to add. 

One of the theories is that because the cells in your cerebellum are similar to those of your intestines, the body decides to attack those as well as the intestines when the immune system is activated by gluten.

 

Open Original Shared Link

 

The general consensus is that if you are super diligent then the brain can slowly repair itself but it is slow and there is a point of diminishing to no return (middle age+ and someone still eating gluten). Its incredibly important for someone with ataxia to not slip up as it can set you back quite awhile. This is why I felt so frustrated. I would read about people being glutened and a lot of the times it would be along the lines of, "Whelp, I pooped myself for a week but I'm starting to be on the mend now." (not trying to diminish anyone's suffering, I just couldn't relate to many people's symptoms which left me feeling a little lost) where as it would take a month or more for me to feel anywhere near normal. Anyways, I'm feeling a lot better now and I'm super thankful to have this forum, I doubt I would have found the information I needed to get better without it. Its also great to vent to other Celiacs/NCGS.

[GF Lover]

Note:  To Older Celiacs reading this thread.  As we age, it is "Normal" to develop white areas in our brain.  They call it "age appropriate" white areas. 

 

Colleen

[nmlove]

I believe there are a few members that found abnormal "white spots" on their MRI due to ataxia. I think their doctors thought it could be ms but it proved to be celiac disease damage. I don't know much about this area but I would not be surprised if it was celiac disease related. I think it is smart of you to check into it fully though.

Hopefully someone else can give you better info. Best wishes.

 

Nicole, thank you. I will not be surprised either. It's just so darn frustrating, especially when it's your kid. His GI doc talked about calcium deposits and looking at seizure activity because of it. Apparently you can have seizure activity and not know it. Hopefully this neuro doc is OK and not a waste of time.

 

Nicole

[nmlove]

Note:  To Older Celiacs reading this thread.  As we age, it is "Normal" to develop white areas in our brain.  They call it "age appropriate" white areas. 

 

Colleen

 

Yes, Colleen! I am so glad you mentioned this. I should have but wasn't thinking. My son is 9. It's very normal to have spots as you age. Heck, you can have a ton of neuro symptoms and have a normal looking brain. (I did when I had an MRI when I started experiencing hemiplegic migraines for the first time last year!)

 

Nicole

[nmlove]

I've been having some problems like this after going gluten-free. It was driving me insane, I had plateaued and was still feeling terrible while my anemia was still there a bit but otherwise it seemed I was recovering. I then read about gluten ataxia in a gluten-free magazine (Living Without I believe) and realized it described me to a T. Among the other usual ataxia symptoms I would also get stabby sudden headaches (which I noticed were markedly different from the migraines I get).

 

I have in the past 2-3 weeks gone completely processed food free. Nothing that is labelled gluten-free I use with two exceptions - GIG (Gluten Intolerance Group) Certified spices (from Spicely.com) and a few things from Nuts.com (taking care not to eat too much). I go with GIG certified things because they are tested down to 10PPM and they are actually active about checking. I know in Canada there were standards for the word gluten-free before the US (that new law, right?) but its not as if they have anyone checking, its only after complaints that items are recalled. I'm not sure how it is in the US (or elsewhere) but I know here if something is naturally gluten-free, they can label it gluten-free no matter what crazy stuff it touches on the way to you. 

 

I must say I've been doing a lot better and saw a really big improvement almost immediately. I was a little sceptical at first that trace amounts could be doing anything but I ran out of almond flour from nuts.com and picked up one labelled gluten-free at the store near me and after making pancakes with it I felt terrible all day and had a lot of neuro symptoms. 

 

I have an MRI scheduled soon and I can update you if I have any abnormalities. I finally got an appointment to get one; I started having seizures around January, which only happened a few times, thankfully.

 

Edit:

Rereading your questions I have a bit more to add. 

One of the theories is that because the cells in your cerebellum are similar to those of your intestines, the body decides to attack those as well as the intestines when the immune system is activated by gluten.

 

Open Original Shared Link

 

The general consensus is that if you are super diligent then the brain can slowly repair itself but it is slow and there is a point of diminishing to no return (middle age+ and someone still eating gluten). Its incredibly important for someone with ataxia to not slip up as it can set you back quite awhile. This is why I felt so frustrated. I would read about people being glutened and a lot of the times it would be along the lines of, "Whelp, I pooped myself for a week but I'm starting to be on the mend now." (not trying to diminish anyone's suffering, I just couldn't relate to many people's symptoms which left me feeling a little lost) where as it would take a month or more for me to feel anywhere near normal. Anyways, I'm feeling a lot better now and I'm super thankful to have this forum, I doubt I would have found the information I needed to get better without it. Its also great to vent to other Celiacs/NCGS.

 

Skullgrl, thanks for the info. I am in the middle of reading the article. I love personal stories as it helps me visualize symptoms. A list of symptoms can really bring out the hypochondriac in me. Food bothers me neurologically as well - diagnosed celiac and dairy/egg/soy issues - so I shouldn't be too surprised if my son is too much like me. Who knows. He may have experienced stuff and I never knew since he was diagnosed so young and is only now just starting to verbalize. Even now it's not much.

 

"My head hurts."

 

"I need to lie down."

 

"I feel weird."

 

"I feel off."

 

That's about it. His GI doc mentioned calcium deposits and seizure activity. I suppose calcium deposits are a possibility as well (due to celiac and malabsorption). When he was 6 he had a bone scan done and was found to have low calcium. He's so tall though that he really surprised his doctor. He still is tall and is over 95% on the growth chart.

 

No one has mentioned gluten ataxia to me. I found that on my own and so did my sister-in-law nurse. I just wonder if lab tests can be normal but still have reaction at lower levels? Is that even possible? Does that make sense? Aside from the first 6 months when he was accidentally consuming gluten (thanks to rice milk) all his celiac related labs come back fine.

 

So, so frustrating, but hopefully we'll get to the bottom of this sooner rather than later. I do have a feeling we're going to have to make our diet stricter for a bit to see if it helps.

 

Thanks so much,

Nicole