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Mermaid's Mom

Gluten Ataxia confusion...

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So as I have stated I think my daughter has Gluten Ataxia.  I realize that it isn't commonly recognized and that there may not even be answers to some of these questions but I am going to throw them out there and see if people can help educate me.

1.  How is it classified?  I am reading through all kinds of posts (old and new) and it seems that commonly people discuss 3 types of gluten issues.   Wheat allergy, gluten intolerance and celiac.  Is Gluten Ataxia a 4th type or does it fall in one (or more) of the others? 

2.  Branching off of question 1 - Are most Gluten Ataxic people also Celiac or are some of you NCGS?

3.  Do most Gluten Ataxic people on this board have it as an official diagnosis?  Or do you just know you have it but your Dr's don't recognize it yet?

4.  Are you doing anything different (in terms of recovery/treatment) that other Celiacs and NCGS sufferers don't have to worry about?

Thank you!

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I thought of it as another kind of symptom that affects some of us. The immune system just reacts and attacks a little differently, or so how I thought of it. I found I require higher amounts of vitamins and minerals associated with neurological development and support. Much higher in fact then others to feel "normal" mostly magnesium and b vitamins. Nerve damage and brain damage are the slowest to heal. I have good and bad days with feeling, motor control, and mind. I found a diet low in carbs (less then 50g net) and high in fats and protein leads to improved clarity and dexterity. 

There was no official diagnosis from my doctors. They sorta just thew it in with the celiac diagnosis when I complained about symptoms. I think I sent you the research I had found on ataxia and gluten sometime earlier and how the immune reaction to gluten in Celiacs leads to brain and nerve damage.

I know we have another member here with a nerve reaction to gluten who is NCGS who can perhaps give there point of view.

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Mermaid's Mom,

Tg6 is the antibody test you are looking for to see if the neuorlogic problems are gluten related.

Just search on celiac.com for Tg6 and several articles will come up.

I will link a few here for you to research.

https://www.celiac.com/articles/23275/1/Can-Transglutaminase-6-Antibodies-Help-Diagnosis-of-Gluten-Ataxia/Page1.html

quoting

"Follow-up screens showed that one year of gluten-free diet left TG6 antibody levels greatly reduced or undetectable.

The study shows that antibodies against TG6 are gluten-dependent and that they seem to be a sensitive and specific indicator of gluten ataxia."

Researchers in Israel has actually linked ALS symptom's to gluten antibodies.

see this link

https://www.celiac.com/articles/23967/1/Israeli-Researchers-Propose-Link-Between-Gluten-and-ALS/Page1.html

There was actually an earlier study that showed a gluten allergy could present with/as ALS like symptom's they say celiac "mimicked" ALS in it's presentation.

Here is the link in a few more months it will 10 years old but since doctor's don't cross talk between diseases well the link/research goes un-noticed often.

http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html

I hope this is helpful.

posterboy,

 

 

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2 hours ago, Ennis_TX said:

I thought of it as another kind of symptom that affects some of us. The immune system just reacts and attacks a little differently, or so how I thought of it. I found I require higher amounts of vitamins and minerals associated with neurological development and support. Much higher in fact then others to feel "normal" mostly magnesium and b vitamins. Nerve damage and brain damage are the slowest to heal. I have good and bad days with feeling, motor control, and mind. I found a diet low in carbs (less then 50g net) and high in fats and protein leads to improved clarity and dexterity. 

There was no official diagnosis from my doctors. They sorta just thew it in with the celiac diagnosis when I complained about symptoms. I think I sent you the research I had found on ataxia and gluten sometime earlier and how the immune reaction to gluten in Celiacs leads to brain and nerve damage.

I know we have another member here with a nerve reaction to gluten who is NCGS who can perhaps give there point of view.

There is so much conflicting info out there!  I just read and article that said this:  In 2011, gluten ataxia was officially recognized as distinct from celiac by a panel of 15 international celiac experts who convened in London to describe and define the growing set of gluten-related disorders, especially non-celiac gluten sensitivity.

Article: http://www.glutenfreeandmore.com/issues/4_31/gluten-and-your-brain-3666-1.html

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13 minutes ago, Posterboy said:

sMermaid's Mom,

Tg6 is the antibody test you are looking for to see if the neuorlogic problems are gluten related.

Just search on celiac.com for Tg6 and several articles will come up.

I will link a few here for you to research.

https://www.celiac.com/articles/23275/1/Can-Transglutaminase-6-Antibodies-Help-Diagnosis-of-Gluten-Ataxia/Page1.html

quoting

"Follow-up screens showed that one year of gluten-free diet left TG6 antibody levels greatly reduced or undetectable.

The study shows that antibodies against TG6 are gluten-dependent and that they seem to be a sensitive and specific indicator of gluten ataxia."

Researchers in Israel has actually linked ALS symptom's to gluten antibodies.

see this link

https://www.celiac.com/articles/23967/1/Israeli-Researchers-Propose-Link-Between-Gluten-and-ALS/Page1.html

There was actually an earlier study that showed a gluten allergy could present with/as ALS like symptom's they say celiac "mimicked" ALS in it's presentation.

Here is the link in a few more months it will 10 years old but since doctor's don't cross talk between diseases well the link/research goes un-noticed often.

http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html

I hope this is helpful.

posterboy,

 

 

Thanks for the links!  Will check them out!

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Oh and posterboy just now I see that the article confirms what you are saying:  A new screening tool for gluten ataxia may soon be available. Recently, Hadjivassiliou found that approximately 70 percent of individuals with gluten ataxia have an antibody, TG6, which is related to the main antibody detected in untreated celiac disease, TG2. But unlike TG2, which is expressed in the gut, TG6 is primarily expressed in the brain.

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Hi. I agree that the nomenclature is confusing.

Here's (yet another) article that may help you understand the differences and similarities between Celiac Disease and Gluten Sensitivity and Gluten Ataxia.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

 

It's a very dry article, but it's worth slogging through the first part because it covers Gluten Ataxia in depth.

Hope this helps.

Knitty Kitty

 

 

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Watch out for a mama on a mission to help her child. You are doing a grat job! I think you have figured out the problem, all the pieces of the puzzle that you have written about seem to fit the gluten ataxia diagnosis. I know it must be really stressful when dealing with the misery your daughter is in, add in SPD and oh my gosh. I have two boys with Autism and SPD, and in the past, I sometimes wanted to pull my hair out. You keep up the good work, you are really getting somewhere!

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18 minutes ago, Washingtonmama said:

Watch out for a mama on a mission to help her child. You are doing a grat job! I think you have figured out the problem, all the pieces of the puzzle that you have written about seem to fit the gluten ataxia diagnosis. I know it must be really stressful when dealing with the misery your daughter is in, add in SPD and oh my gosh. I have two boys with Autism and SPD, and in the past, I sometimes wanted to pull my hair out. You keep up the good work, you are really getting somewhere!

Thanks!  I always joke that when I imagined having kids I pictured myself kissing boo-boos, hiding Easter Eggs, ignoring temper tantrums, helping pick out a prom dress...I had NO IDEA that in reality I would be pouring over medical journals and learning about the Vestibular system, gluten anti-bodies and every detail about how the body/brain works.   And the fact that the medical community is not much help...GAH! 

This parenting gig ain't for wimps! LOL! 

On that note I think I am going to request some blood work!

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I'm interested in following this post as we are in the same boat pertaining to my 4 yo son. His presentation is purely neurological and manifests with a multitude of symptoms that affect cognition, motor, speech and more. The symptoms disappear when gluten is removed from his diet and reappear when gluten is introduced into his diet. We have seen two neurologists who have failed to recognize this as a true condition. 

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As a whole, doctors are so frustrating!!! They may be experts in their field, but WE know our children best. They need to listen to what we are saying. We don't just bring our children to a doctor's office for grins and giggles. I get so tired of hearing "oh no it can't be that problem, that never happens with _______". Well, not everyone's body knows about that particular rule and follows along. Not everyone's illness fits neatly into their diagnosis box. Recently my 11-year old son had a nasty cold and a very sore throat. I took him in, stupidly listening to the doctor who said she has never had a child with strep who also didn't have swollen glands. He didn't have swollen glands. I took him back two days later and demanded she do a strep. I told her I've been a mom for 27 years, I have six kids. He shouldn't have a fever for 8 days. Something is wrong. She did the strep test, it came back negative, but they sent it off to a lab to double check, and he had Strep. He was his old self two days later on antibiotics. Ok so the point of my rant is to go with your gut, always. My mom always told me that, and it has served me well, every single time, my whole life. Cheering you on from Washington state!

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I am reminded about how it was my mother who pointed me at celiac disease back when my doctor had no idea.    Washingtonmama, artistsl, and Mermaid's Mom, your children are truly blessed to have such loving mothers. I can say I am thankful mine pointed it out and supported me even as a adult.     I was adopted, and my mother has no relation to this disease on a family/genetic level. But when I thought I was going crazy with the neurological, and nerve symptoms driving me mad to the point of screaming, punching things, and banging my head on the wall wondering why my mind was not working, why my hands would not do what I wanted them to do, why my body kept failing and turning against me (Scariest thing in the world is having your own mind and body turn on you not doing what you want it to do)   She was there to stop me from hurting myself, support me, hug me tell me it would be alright, and she even did the research for months to find out what was wrong and was the one to find and suggest the celiac disease.

I am reminded by seeing other mothers here trying to help their children how thankful I need to be about mine. >.> think I will see about going over and cleaning her house for her today while she is at work and surprise her, and see what I can get her for a surprise gift. Tad random thank you, I suppose just thinking of how grateful I am too her.

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5 hours ago, Ennis_TX said:

I am reminded about how it was my mother who pointed me at celiac disease back when my doctor had no idea.    Washingtonmama, artistsl, and Mermaid's Mom, your children are truly blessed to have such loving mothers. I can say I am thankful mine pointed it out and supported me even as a adult.     I was adopted, and my mother has no relation to this disease on a family/genetic level. But when I thought I was going crazy with the neurological, and nerve symptoms driving me mad to the point of screaming, punching things, and banging my head on the wall wondering why my mind was not working, why my hands would not do what I wanted them to do, why my body kept failing and turning against me (Scariest thing in the world is having your own mind and body turn on you not doing what you want it to do)   She was there to stop me from hurting myself, support me, hug me tell me it would be alright, and she even did the research for months to find out what was wrong and was the one to find and suggest the celiac disease.

I am reminded by seeing other mothers here trying to help their children how thankful I need to be about mine. >.> think I will see about going over and cleaning her house for her today while she is at work and surprise her, and see what I can get her for a surprise gift. Tad random thank you, I suppose just thinking of how grateful I am too her.

How sweet!  And how lucky you are to have such an amazing momma!!  I tease my daughter that when she grows up she will either move across the country to get away from me and my crazy ideas OR she will never move out!  Time will tell ;)  Give your mom a hug from us!! :)

 

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Ennis, what a loving mom you have! You really should go clean her house for her. I would love that if my kids did that for me. 

 

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16 hours ago, artistsl said:

I'm interested in following this post ...

Hi artistl,

If you click the green circle with a plus sign in it near right of the thread title, you can add a follow to the thread.  Select the frequency of updates and you will get an email when replies are made to the thread.

Edited by GFinDC
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19 minutes ago, GFinDC said:

Hi artistl,

If you click the green circle with a plus sign in it near right of the thread title, you can dd a follow to the thread.  Select the frequency of updates and you will get a an email when replies are made to the thread.

Did not know!  Thanks!  Also how do you give a member a green plus sign/reputation?

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2 hours ago, Mermaid's Mom said:

Did not know!  Thanks!  Also how do you give a member a green plus sign/reputation?

 

2 hours ago, Mermaid's Mom said:

Did not know!  Thanks!  Also how do you give a member a green plus sign/reputation?

Reputation is the green Up arrow bottom right of a post.  Unfortunately the cookies for reputation movement hasn't gained enough traction yet in the forum.  But we can always hope! :)

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I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years. 

Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue.

Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. 

Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free. 

I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).  

At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. 

And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?

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check out CoQ10, not related to celiac (as far as I know) but for balance issues.

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9 hours ago, Feeneyja said:

I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).  

Your daughter could have non celiac gluten sensitivity. That would correspond to negative celiac tests coupled with positive reaction to the gluten free diet. Whilst there are similarities to celiac presentation it appears that neuro symptoms are more common in ncgs patients.  That seems to be the case for me anyway! 

The condition is as yet poorly understood but there is progress being made, check out a topic I just started on the pre diagnosis thread with some info and links.  The remarks by umberto Volta in particular are just about the best summation I've yet seen on where the research is at. 

I will post a link later. :)

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18 hours ago, Feeneyja said:

I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years. 

Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue.

Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. 

Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free. 

I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).  

At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. 

And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?

Feeneyja,

This will be a little long but I will  try to be brief as possible.

See this discussion thread that talks about how Pellagra is often diagnosed as other disease's today because doctor's rarely recognize it today in a clinical setting.

Pellagra's is described as the 3 D's if you don't count the 4th D of death if it goes long enough and is not diagnosed in a timely manner. Dementia (Neurological) Digestive (GI problems), Dermatitis issues (Ezcema, Psorsias, Acne etc.)

According to mdguidelines website http://www.mdguidelines.com/pellagra

indicates that quoting “The diagnosis of pellagra is straightforward when the classic rash is present but may be elusive if there are only gastrointestinal and/or neurological manifestations.”

And why I believe in many cases Pellagra goes undiagnosed today.  Because doctor's have forgotten how it presents.

A longer researcher article about the neurological presentations of pellagra mention the many ways a Niacin deficiency can present itself.

Here is the link https://www.hindawi.com/journals/cggr/2012/302875/

and I will quote some of the neurological/dementia related symptom's of an undiagnosed pellagra patient.

"Mental symptoms were wider than dementia, in that depression, fatigue, psychomotor retardation, mania, obsessions, and a whole range of psychoses with auditory and visual hallucinations were well described, along with personality change and sociopathic and drug and alcohol addictive behaviours. Panic disorders were seen as was a general inability to deal with physical or mental stress. Poor brain development such as hydrocephalus or cerebral palsy was also common. Acute delirium or even coma occurred, with some patients having myoclonus and other extrapyramidal signs reminiscent of the spongiform encephalopathies. The dementias of pellagra included features akin to Lewy body, Alzheimer’s, frontotemporal, vascular, and prion diseases. Parkinsonism was also common and a festinant gait was first described in pellagrins. Tremors of various descriptions, including asymmetric rest tremors, were noted and some patients had typical paralysis agitans. Pellagrins had a characteristic expressionless facies, so some signs of parkinsonism were present in most cases. Many features of pellagra closely resemble the nonmotor aspects of PD.

The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants."

It is me again.

You can see the neurological symptom's of Pellagra are severe and wide ranging.

Taking Niacinamide 3/day for 6 months can alleviate many of these symptom's if your daughter has subclinical pellagra and the doctor's don't know to look for it.

I had deep depression for many, many years and I shudder to think now that only a Vitamin could of helped me 30+ years ago and the doctor's didn't know to look for it.

Shoot it isn't just Niacin.  All B-Vitamin's help your stress levels.  IF you have stress B-Vitamins can help your stress levels.

I take Folic Acid for Blood pressure problems and it keeps my BP with in a normal range.

A article on celac.com discussed this topic in detail a few months ago.

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

I hope it is helpful.  Good luck on your continued journey.

If you have never heard of Pellagra you are not alone.

Dr. Heaney discusses why this is so in his online article Pellagra and the 4 D's.

http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/

If you don't have time to read the whole hindawi article I also suggest this shorter but informative blog about why a Niacin deficiency can cause dementia related conditions.

https://pellagradisease.wordpress.com/

Then decide for yourself and your daughter's sake to decide whether to take Niacinamide or not to see if it helps the D's symptom's she is experiencing (Digestive, Dementia etc.)

The International Journal of Celiac Disease makes note of this in their research that Pellagra could be contributing to symptom's being diagnosed as Celiac disease today instead of a possible (co-morbid) Pellagra that causes the same symptom's.

When they discuss how Pellagra and Celiac disease are related (Co-Morbid) in a Celiac diagnosis are surprised to find that in 58% of Celiac's -- can also be diagnosed with Pellagra.

See this link http://pubs.sciepub.com/ijcd/3/1/6/

Quoting

3. Pellagra and celiac disease

"The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]."

If one is being diagnosed incorrectly the other co-morbid conditions can continue to cause Celiac like symptom's.

But if the majority of those who have been diagnosed as Celiac could be helped by taking Niacinamide I see no you reason you shouldn't try it.

Or at least research it some more.

Again good luck on your continued journey.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

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On 4/29/2017 at 10:29 PM, Feeneyja said:

I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years. 

Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue.

Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. 

Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free. 

I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).  

At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. 

And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?

Has a doctor seen her in the midst of one of her gluten reactions? If not take her to either her neurologist, as an emergency appointment, or take her to the ER.  You say she was doing well until glutened. This shows clearly that the issue is gluten. It might help to keep a record of her food consumption and any symptoms. That can be shown to her doctors. Folks with gluten ataxia usually have brain white matter lesions. Those lesions are diagnostic of gluten ataxia.  If she goes to the ER during one of these reactions chances are good she will get an MRI or a referral for one. The doctor who told you to keep her strictly gluten free is an expert and might even help by reading the scans since there are too many newuros who are not familiar with the lesions. These lesions can be mistaken for MS lesions (that was the case for me!) so they need to be interpreted by someone familiar with gluten  brain impact.

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Thank you everyone for the responses. Yes, it is definitely gluten related. We noticed the symptoms also came and went when we undwent a gluten challenge for celiac testing. We cut out gluten to see if it would help her bloating and we're amazed when mystery neurological symptoms disappeared then were shocked with the violent reaction with reintroduction.  We have been gluten free for several years now so this recent large gluten exposure was clearly a shock to the system. And the thing that seems to confuse her doctors is the SIBO. They keep referring to that diagnosis and they don't hear me when I say the neurological stuff is separate. The clear indication of that is this gluten exposure just after successfully treating SIBO. The gut stuff was not there. It was purely neurological. 

Thank you ravenwoodglass for the advice. I'm keeping good records and recording what I see. I was very close to going to the ER, but I waited to see if it would subside and it did after three days or so. It wasn't until AFTER that episode that I read about gluten ataxia. 

Can you tell me who made your diagnosis and how you got there?  It sounds like misdiagnosis is common. 

Edited to add: Our old insurance was terrible. Couldn't get referrals, took too long to get appointments.  So no, I have only been getting to the doctor well after the fact.  But we have new insurance now and I am free to see anyone. I'm hoping to find someone knowledgeable about this to monitor her. 

Edited by Feeneyja
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In November of 2016, my four years old son suddenly began to suffer from severe keratosis pilaris, constipation, bloating, frequent burping, fatigue, insomnia, auditory and visual hallucinations, episodes of confusion, balance issues, strange finger posturing (steropathy), sensory processing difficulties and major personality changes. We travelled across the country to seek medical help. He has been seen by three neurologists and dozens of other specialists. Every test performed came back negative (encephalitis, celiac, B vitamin deficiency) and ultimately we were referred to psychology for anti psychotic meds. The only indicator that something wasn't right medically was his thyroid tested high and we were told that he probably had a cold at the time of the test which can cause the thyroid to elevate.

I removed gluten from his diet as I was desperate to try anything. After two weeks entirely gluten free he was able to run, play, laugh, sleep soundly through the night. He no longer experienced hallucinations, insomnia, constipation, bloating, strange finger posturing, etc. It was as if we had a normal four years old boy again! Nearly all of his deficits went away after four months gluten free and return and last for days upon the slightest gluten exposure (at least four separate incidents of exposure due to very loose snack rules at school). His thyroid was retested and all is within normal limits. I just recently started giving him vitamin B12 (thank you posterboy for sharing info on this topic). Despite his bloodwork not showing B vitamin deficiency, that seems to be helping with those very minor lingering symptoms. Hoping that's not a placebo affect. 

So Feeneyja, regarding diagnosis I am in the very same exact predicament as you.  Any exposure to gluten and my son can hardly function at school (for days). We have traveled to Mayo Clinic to see a neurologist and the best they could do was refer us to allergy for a food challenge. They thought that GI wouldn't be able to help. We can't afford to travel back and forth to Mayo for iffy results. I'm looking for a top doctor who is familiar with this type of presentation and perform a thorough clinical assessment perhaps allowing for a diagnosis.

 

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10 hours ago, artistsl said:

In November of 2016, my four years old son suddenly began to suffer from severe keratosis pilaris, constipation, bloating, frequent burping, fatigue, insomnia, auditory and visual hallucinations, episodes of confusion, balance issues, strange finger posturing (steropathy), sensory processing difficulties and major personality changes. We travelled across the country to seek medical help. He has been seen by three neurologists and dozens of other specialists. Every test performed came back negative (encephalitis, celiac, B vitamin deficiency) and ultimately we were referred to psychology for anti psychotic meds. The only indicator that something wasn't right medically was his thyroid tested high and we were told that he probably had a cold at the time of the test which can cause the thyroid to elevate.

I removed gluten from his diet as I was desperate to try anything. After two weeks entirely gluten free he was able to run, play, laugh, sleep soundly through the night. He no longer experienced hallucinations, insomnia, constipation, bloating, strange finger posturing, etc. It was as if we had a normal four years old boy again! Nearly all of his deficits went away after four months gluten free and return and last for days upon the slightest gluten exposure (at least four separate incidents of exposure due to very loose snack rules at school). His thyroid was retested and all is within normal limits. I just recently started giving him vitamin B12 (thank you posterboy for sharing info on this topic). Despite his bloodwork not showing B vitamin deficiency, that seems to be helping with those very minor lingering symptoms. Hoping that's not a placebo affect. 

So Feeneyja, regarding diagnosis I am in the very same exact predicament as you.  Any exposure to gluten and my son can hardly function at school (for days). We have traveled to Mayo Clinic to see a neurologist and the best they could do was refer us to allergy for a food challenge. They thought that GI wouldn't be able to help. We can't afford to travel back and forth to Mayo for iffy results. I'm looking for a top doctor who is familiar with this type of presentation and perform a thorough clinical assessment perhaps allowing for a diagnosis.

 

artistsl I just read this post fresh out of being at the Naturopath and you should really research MTHFR gene deficiency.  I started another post about it here yesterday but I am not sure is you saw it.  Nevermind see that you are already there!

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