12 year old walks fine...usually (otherwise is in a wheelchair)...neurological?

[AlohaMaMa]

Hello and thanks for stopping by!

I have a 12 year old daughter that went un-diagnosed for 10 years showing symptoms in my womb that didn't seem right.

She would kick, strong with both legs even from before birth (not the regular baby kicking!!!). Then after she was born she continued kicking like this from the high chair, the stroller, car-seat, and so on. She would cry uncontrollably and now I wonder if she was better when she was not breastfeeding at times I may not have been "low carb". Then she began eating and from time to time would have fits where she could express that her legs were in immense pain - this was not normal but once again diagnosed as "growing pains" (very triggering!!!) and her stomach pains and continuous constipation resulted in being told year upon year to have her "eat more fruit"...eventually she would be getting x-rays for constipation and I ended up demanding to see a specialist and with one blood test it was determined that she has Celiac Disease. We are both now on a gluten-free and lactose free diet...gluten-free alone didn't improve her symptoms alone but after 6 months gluten-free we dropped the lactose...game changer! Okay so we enjoyed being away from cross-contamination while on "Covid lock-down" since we suspected she was getting a lot of contact from school. Now that school is back in session however she was back in a wheelchair (the walker wasn't enough since her legs were a dead weight). Since it's impossible to get away from gluten we need to know how it's causing her to not be able to walk or shower without Designated Medical Equipment. The day before her legs turned to dead weight she was running laps and playing pickle-ball...she's in good shape and very social then randomly in a wheelchair one day and back to normal a day or two later. Doctors seem to run from us and our weird problems...you can't make this up!!! On the west coast there is very little attention given to Celiac Disease and even less support. Is this Neurological? Could she have a second illness that hasn't been detected yet? Your wisdom on neurological related issues or alike is welcome! 

Love, SB MaMa

[trents]

Welcome to the forum, AlohaMaMa!

First, many celiacs have issues with dairy products. Either the sugar in milk (lactose) or the main protein component (casein) can be a problem. In addition, research has shown that in some celiacs, casein blunts the villi of the small bowel very similar to what gluten does.

Second, it is well-known by the celiac community that celiac disease can cause various kinds of neurological problems.

Third, there may be something medically going on with your daughter in addition to celiac disease. So keep looking. 

Fourth, you must by all means see that your daughter does not consume gluten. Give her a lunch to take to school if the school cannot reliably address her dietary needs. As a family, it sounds like you need to take this more seriously. Cutting back on gluten is not going to hack it. You must see to it that your daughter eliminates it from her diet. Until you eliminate gluten as the culprit in her physical problems, you will never be able to confidently explore other options.

It is very difficult to prevent gluten cross contamination in a household where other members are still consuming gluten. You need to consider having the whole family adopt a gluten free lifestyle. Many homes have done this. And realize also that there is good possibility that other family members have or will develop celiac disease. One recent study by the Mayo Clinic found the incidence of celiac disease in the first degree relatives of those having been diagnosed with celiac disease was 44%. 

Like you, many celiacs live in places where there aren't a lot of resources for celiacs but they find ways to be consistent in their gluten free eating. It usually means not eating out at restaurants, eliminating as many processed foods as possible while sticking to fresh meat, fruit and vegetables that you cook yourself. It can be done.

[AlohaMaMa]

Thank you for your response and I am stunned if my original message came off sounding like we casually are gluten-free. Again, we are a gluten free household including our dog (so we don't have any gluten to handle). We also dropped all lactose after six months of being on a Strict gluten-free diet. My daughter is very cautious about what she eats and will not eat anything processed in a factory that handles wheat - this is Much more strict than eating gluten free. Additionally, we did replace the following items for our own piece of mind (over our actual budget) all gluten containing: medications, lotions, makeup, toaster oven, wooden spoons, cast iron pan, waffle iron, pizza stone, strainers, cutting boards, bath products, toothpaste, pantry items containing gluten or lactose - this took me a year to completely remove room by room...every tube of chap-stick! I started with her bathroom and now all of her products are specifically gluten-free including the big bottle of lotion I got for her yesterday. I don't have Celiac Disease however I believe that I am gluten sensitive. My daughter wasn't exposed to gluten during the entire pandemic and yes now that she is at school there is no where to hide from cross-contamination of gluten onto tables, door knobs, and so on...I am certain that this is what caused the flareup. Sooo my 12 year old does have to carry disposable gloves and non-bleach Clorox wipes and sanitizer in her backpack and does use them. There is no getting away from gluten that compares to her high sensitivity. She hasn't had gluten in two years however if someone eats a sandwich them touches her hand it will swell up. Additionally, she has a variety of skin issues (not the common type)...a bit of a medical mystery. That said, we have two more referrals this week to shut us up but what we really need is a Neurologist that is familiar with Celiac + Other Auto Immune issues including those that impact someone's ability to walk. What kind of neurological problems exactly??? I keep researching and eliminating syndrome's - this week I am on Huntington's and checking Staph and Strep numbers in her blood work. We would love to find a doctor of this nature that can work potentially with her G.I. We can't just keep seeing Specialists that know nothing about Celiac except that it flattens your villi and you shouldn't eat gluten...we are way past Gluten 101! P.S. We do not allow anyone to bring gluten into our home and we do a lot of home cooking and rarely eat our in this paradise we live in... S.O.S.

[trents]

Thank you for the additional information. I probably read too much into your comment about there being no way to avoid gluten when your daughter is at school and I did not realize until you explained this that she was so extremely gluten sensitive. Sounds to me like she may also be allergic to wheat. But I can't help but wonder if something else is going on. I would not totally disregard the possibility that something non-gluten/non-wheat may be going on so I would continue to work with the doctors if I were you and let them do their thing. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3829244/ Note the mention of ataxia.

 

 

[knitty kitty]

@AlohaMaMa,

I suffered from painful neuropathy in my legs before we figured out the Celiac thing.  There were days when I had foot drop and pain so severe I could barely walk.  It turned out I was deficient in vitamins and minerals.  Celiac Disease causes malabsorption which results in malnutrition.  My doctors weren't familiar with nutritional deficiency diseases (outside of alcoholism) and they wrote me off as hypochondriac. 

You said... 

"The day before her legs turned to dead weight she was running laps and playing pickle-ball...she's in good shape and very social then randomly in a wheelchair one day and back to normal a day or two later. Doctors seem to run from us and our weird problems...you can't make this up!!!"

 

This rang a bell with me.  My painful legs sometimes worked better some days more than others.  People thought I was faking and making stuff up.  I wasn't.  I started researching...being a microbiologist, this was right up my alley.

I realized I had Thiamine deficiency.  Thiamine deficiency symptoms can come and go depending on how much Thiamine is consumed in the diet.  One day I could walk up and down all the aisles in the grocery store, and the next I could barely move.  

I had several deficiencies in the eight B vitamins....  Niacin (B3) and Cobalamine (B12) and even Vitamin C can manifest as neuropathy.  

I began supplementing with high dose Thiamine, niacin, and the other B Complex vitamins and minerals like magnesium (thiamine needs magnesium to work properly).

Here's some articles that might help....

This one explains why symptoms of thiamine deficiency can come and go...

 

"Thresholds and Tipping Points in Thiamine Deficiency Syndromes"

https://www.hormonesmatter.com/thresholds-and-tipping-points-in-thiamine-deficiency/

 

This article describes thiamine deficiency in nursing moms and their infants....

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

 

"Nutritional Neuropathies"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

 

Case studies....

"A Patient With Thiamine Deficiency Exhibiting Muscle Edema Suggested by MRI"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6297209/

 

"Myopathy in thiamine deficiency: analysis of a case"

https://pubmed.ncbi.nlm.nih.gov/16920153/

 

Thiamine fact sheet...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

Have the doctors check your daughter for thiamine deficiency and other vitamin and mineral deficiencies before starting supplementation (otherwise the tests will show false levels).  

I couldn't get my doctors to take me seriously, so I supplemented with over the counter vitamins and minerals.  I took high dose Thiamine and had immediate improvement.  It was amazing!  

I hope this helps you and your daughter find answers.

 

[RMJ]

Celiac disease can definitely have neurological effects.  Here is a fairly recent scientific review article about it.  If you click on “author information” (near the top, under the list of author’s names) there are email addresses for the authors.  Perhaps you could email the author who is listed for correspondence and ask if she knows of gastroenterologists or neurologists in your area who have good knowledge of celiac neuropathy and gluten ataxia.

Neurological Manifestations of Neuropathy and Ataxia in Celiac Disease: A Systematic Review

[yuluyouyue]

I am very sorry to hear your daughter has these rather baffling and quite painful sympotms. Could you clarify when she had to start using the wheelchair? You said she complained all along, while undiagnosed, about painful legs, but that is still quite different from having to use a wheelchair. And now on gluten free she is symptom free unless when there is a flare up when she suddenly cant walk? How long does that usually last? I apologise for the questions, I would just like to understand it better. Fwiw, my celiac friend of a friend, almost got to the point to have to use the wheelchair in her childhood, but once she was diagnosed and started gluten free, she completely recovered and is now symptom free.

[AlohaMaMa]

On 10/6/2021 at 5:32 PM, trents said:

Thank you for the additional information. I probably read too much into your comment about there being no way to avoid gluten when your daughter is at school and I did not realize until you explained this that she was so extremely gluten sensitive. Sounds to me like she may also be allergic to wheat. But I can't help but wonder if something else is going on. I would not totally disregard the possibility that something non-gluten/non-wheat may be going on so I would continue to work with the doctors if I were you and let them do their thing. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3829244/ Note the mention of ataxia.

 

 

We have tested for wheat and the bloodwork determined she's not allergic to wheat. It's not going to be as easy as that unfortunately. I have been scratching my head for a few years even going to back to the four possible issues we, her parents could have had resulting in her having celiac and I'm not 100% sure of that. Hashimoto's is out, me having celiac is out however I now realize I had a gluten sensitivity, her dad likely had ADHD, I did have issues with my thyroid and those issues run in our family however mine was only pregancy induced and then went away (I had my thyroid tested prior to the pregancy which was great for later using as a baseline).

*The most common disorders associated with celiac disease are thyroid disease and type 1 diabetes. Celiac disease is more frequent in those who have the following autoimmune disorders:

Autoimmune Disorder Increased Risk

Addison’s Disease6%

Arthritis1.5-7.5%

Autoimmune Hepatitis6-15%

Hashimoto’s Thyroiditis4-6%

Idiopathic Dilated Cardiomyopathy5.7%

IgA Nephropathy (Berger’s Disease)3.6%

Multiple Sclerosis (MS)11%

Sjogren’s Syndrome2-15%

Type 1 Diabetes Mellitus2.4-16.4%

[AlohaMaMa]

On 10/6/2021 at 5:51 PM, knitty kitty said:

@AlohaMaMa,

I suffered from painful neuropathy in my legs before we figured out the Celiac thing.  There were days when I had foot drop and pain so severe I could barely walk.  It turned out I was deficient in vitamins and minerals.  Celiac Disease causes malabsorption which results in malnutrition.  My doctors weren't familiar with nutritional deficiency diseases (outside of alcoholism) and they wrote me off as hypochondriac. 

You said... 

"The day before her legs turned to dead weight she was running laps and playing pickle-ball...she's in good shape and very social then randomly in a wheelchair one day and back to normal a day or two later. Doctors seem to run from us and our weird problems...you can't make this up!!!"

 

This rang a bell with me.  My painful legs sometimes worked better some days more than others.  People thought I was faking and making stuff up.  I wasn't.  I started researching...being a microbiologist, this was right up my alley.

I realized I had Thiamine deficiency.  Thiamine deficiency symptoms can come and go depending on how much Thiamine is consumed in the diet.  One day I could walk up and down all the aisles in the grocery store, and the next I could barely move.  

I had several deficiencies in the eight B vitamins....  Niacin (B3) and Cobalamine (B12) and even Vitamin C can manifest as neuropathy.  

I began supplementing with high dose Thiamine, niacin, and the other B Complex vitamins and minerals like magnesium (thiamine needs magnesium to work properly).

Here's some articles that might help....

This one explains why symptoms of thiamine deficiency can come and go...

 

"Thresholds and Tipping Points in Thiamine Deficiency Syndromes"

https://www.hormonesmatter.com/thresholds-and-tipping-points-in-thiamine-deficiency/

 

This article describes thiamine deficiency in nursing moms and their infants....

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

 

"Nutritional Neuropathies"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

 

Case studies....

"A Patient With Thiamine Deficiency Exhibiting Muscle Edema Suggested by MRI"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6297209/

 

"Myopathy in thiamine deficiency: analysis of a case"

https://pubmed.ncbi.nlm.nih.gov/16920153/

 

Thiamine fact sheet...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

Have the doctors check your daughter for thiamine deficiency and other vitamin and mineral deficiencies before starting supplementation (otherwise the tests will show false levels).  

I couldn't get my doctors to take me seriously, so I supplemented with over the counter vitamins and minerals.  I took high dose Thiamine and had immediate improvement.  It was amazing!  

I hope this helps you and your daughter find answers.

 

This is very interesting and exciting!!! I am constantly tweaking her vitamins and she runs especially low in D3, but it's possible she is also quite low in others however some of the vitamin deficiencies were detected by her blood panel. I will start by reviewing past results and will share some of the information after I review it with her physicians related to upoming appointment. Greatly appreciated! She was too wear in the foot and legs to even walk down the hall to the bathroom! This could be a game changer and is worth the investment! Thank you so much! ~SB MaMa

On 10/6/2021 at 5:51 PM, knitty kitty said:

@AlohaMaMa,

I suffered from painful neuropathy in my legs before we figured out the Celiac thing.  There were days when I had foot drop and pain so severe I could barely walk.  It turned out I was deficient in vitamins and minerals.  Celiac Disease causes malabsorption which results in malnutrition.  My doctors weren't familiar with nutritional deficiency diseases (outside of alcoholism) and they wrote me off as hypochondriac. 

You said... 

"The day before her legs turned to dead weight she was running laps and playing pickle-ball...she's in good shape and very social then randomly in a wheelchair one day and back to normal a day or two later. Doctors seem to run from us and our weird problems...you can't make this up!!!"

 

This rang a bell with me.  My painful legs sometimes worked better some days more than others.  People thought I was faking and making stuff up.  I wasn't.  I started researching...being a microbiologist, this was right up my alley.

I realized I had Thiamine deficiency.  Thiamine deficiency symptoms can come and go depending on how much Thiamine is consumed in the diet.  One day I could walk up and down all the aisles in the grocery store, and the next I could barely move.  

I had several deficiencies in the eight B vitamins....  Niacin (B3) and Cobalamine (B12) and even Vitamin C can manifest as neuropathy.  

I began supplementing with high dose Thiamine, niacin, and the other B Complex vitamins and minerals like magnesium (thiamine needs magnesium to work properly).

Here's some articles that might help....

This one explains why symptoms of thiamine deficiency can come and go...

 

"Thresholds and Tipping Points in Thiamine Deficiency Syndromes"

https://www.hormonesmatter.com/thresholds-and-tipping-points-in-thiamine-deficiency/

 

This article describes thiamine deficiency in nursing moms and their infants....

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

 

"Nutritional Neuropathies"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

 

Case studies....

"A Patient With Thiamine Deficiency Exhibiting Muscle Edema Suggested by MRI"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6297209/

 

"Myopathy in thiamine deficiency: analysis of a case"

https://pubmed.ncbi.nlm.nih.gov/16920153/

 

Thiamine fact sheet...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

Have the doctors check your daughter for thiamine deficiency and other vitamin and mineral deficiencies before starting supplementation (otherwise the tests will show false levels).  

I couldn't get my doctors to take me seriously, so I supplemented with over the counter vitamins and minerals.  I took high dose Thiamine and had immediate improvement.  It was amazing!  

I hope this helps you and your daughter find answers.

 

I especially can't wait to read the portion regarding myopathy!

[AlohaMaMa]

On 10/6/2021 at 7:06 PM, RMJ said:

Celiac disease can definitely have neurological effects.  Here is a fairly recent scientific review article about it.  If you click on “author information” (near the top, under the list of author’s names) there are email addresses for the authors.  Perhaps you could email the author who is listed for correspondence and ask if she knows of gastroenterologists or neurologists in your area who have good knowledge of celiac neuropathy and gluten ataxia.

Neurological Manifestations of Neuropathy and Ataxia in Celiac Disease: A Systematic Review

Thank you! This is related to some materials I am currently mom-searching!

[AlohaMaMa]

On 10/7/2021 at 2:01 AM, yuluyouyue said:

I am very sorry to hear your daughter has these rather baffling and quite painful sympotms. Could you clarify when she had to start using the wheelchair? You said she complained all along, while undiagnosed, about painful legs, but that is still quite different from having to use a wheelchair. And now on gluten free she is symptom free unless when there is a flare up when she suddenly cant walk? How long does that usually last? I apologise for the questions, I would just like to understand it better. Fwiw, my celiac friend of a friend, almost got to the point to have to use the wheelchair in her childhood, but once she was diagnosed and started gluten free, she completely recovered and is now symptom free.

So I previously mentioned my now 7th grader had to use a wheelchair all day at school last Wednesday. Update, I dropped by the school to drop off something yesterday and I was asked to find her upstairs within the school. I walk up the ramp and she is walking toward me on her quest to find the school nurse and instead falls into my arms in painful upset. I walk her back (helping her walk) to the office and eventually we borrow a wheelchair to get back to our car. I have our wheelchair at home but our tiny home can't accommodate the chair and she didn't have the body strength for the walker so she dragged her body a few times back and forth down the hall to the bathroom. She didn't want to take Tylenol more than twice yesterday but did wrap a heating pad around her foot...eventually it was a foot pain however I could still feel swelling in the posterior of the calves. I had her keep her stockings on to act a a compression sock.

She probably could have used a wheelchair at age 3 but due to everyone saying it's JUST "growing pains" (TRIGGER WORD!) we just kept leaving the doctor's visit ultimately UN-helped. I had to carry her many times and friends of mine would help carry her or I would have to pay the bicyclists to cart us in their rickshaw to our car or home or call an UBER! We would be out for a walk and BAM she would say I can't walk any further. We live by the beach and I just want to talk walks with her and it comes down to we can do it but I have to push the chair which isn't so easy since my spinal column was crushed on all sides although we look healthy...that's what's so frustrating is we just aren't being taken seriously. 

Our family has no idea what we are going through since she is usually fine when we visit - we do also try to travel only when we are physically up to it so those go hand in hand.

We greatly appreciate all of these wonderful suggestions and reads!!! There has got to be an answer out there...somewhere!!!   ~SB MaMa

[AlohaMaMa]

On 10/7/2021 at 2:01 AM, yuluyouyue said:

I am very sorry to hear your daughter has these rather baffling and quite painful sympotms. Could you clarify when she had to start using the wheelchair? You said she complained all along, while undiagnosed, about painful legs, but that is still quite different from having to use a wheelchair. And now on gluten free she is symptom free unless when there is a flare up when she suddenly cant walk? How long does that usually last? I apologise for the questions, I would just like to understand it better. Fwiw, my celiac friend of a friend, almost got to the point to have to use the wheelchair in her childhood, but once she was diagnosed and started gluten free, she completely recovered and is now symptom free.

OH and the flareup took place right after the kid next to her in class was eating Takis! I told the office as I was rolling her out for the day yesterday and they will get on that teacher for now allowing it but also not preventing eating during class.

[RMJ]

AlohaMaMa, may I make a suggestion?  In order to get the most help from doctors, one must describe the problem accurately.  (My family has this issue with my elderly father who keeps saying that he doesn’t walk more because he is tired.  Does that mean sleepy?  Leg muscles tired?)

In this thread you have written multiple descriptions of your daughter’s problem.

• Legs were in immense pain
• Legs turned to dead weight
• Too weak in foot and legs
• Didn’t have the body strength for the walker
• Swelling in the posterior of the calves

As a casual reader, I’m not at all sure what the main issue is.  Is it pain?  Weakness? Where is the pain?  Where is the weakness?  Perhaps it is all of the above, which would also be good information for the doctor.  

[AlohaMaMa]

2 hours ago, RMJ said:

AlohaMaMa, may I make a suggestion?  In order to get the most help from doctors, one must describe the problem accurately.  (My family has this issue with my elderly father who keeps saying that he doesn’t walk more because he is tired.  Does that mean sleepy?  Leg muscles tired?)

In this thread you have written multiple descriptions of your daughter’s problem.

• Legs were in immense pain
• Legs turned to dead weight
• Too weak in foot and legs
• Didn’t have the body strength for the walker
• Swelling in the posterior of the calves

As a casual reader, I’m not at all sure what the main issue is.  Is it pain?  Weakness? Where is the pain?  Where is the weakness?  Perhaps it is all of the above, which would also be good information for the doctor.  

Thank you for your message. I guess the problem is that nothing is constant and even when she does have a "flareup" it's different each time to an extent. Her legs are in immense pain due likely to the swelling. She is unable to lift her legs without using her hands and arms to lift them (even to put her feet into the stirrups of the wheelchair). To touch her legs (even to place a pillow under her legs) causes her great agony when they are in this state. Due to the pain in her feet during a flareup she is unable to set them onto the ground or apply any pressure whatsoever to the point she must slither along the floor to get to the bathroom and back (could not even manage crawling on hands and knees due to leg pain/condition). This same leg pain and weakness make her unable to physically stand on two legs in order to use her walker - she literally collapsed on the floor since her arms cannot hold up her whole body when her legs can't support any weight. When I feel her legs, the majority of the inflammation is on the backside aka posterior side of the calves primarily.

I have been explaining the same thing in as many ways as possible for over a decade, so excuse me but I am emotionally exhausted repeating myself what feels like endlessly to no avail. We have seen numerous doctors and I try very hard to keep definitions on point and relevant. The doctors get overwhelmed easily since they haven't made much progress and without my persistence my child would not have made the progress she has to this point. There is little knowledge about this illness seemingly with anyone in our area to the extent we are seeking care. Please keep your feedback coming as it is most appreciated!

[yuluyouyue]

What an ordeal it must be for you and your daughter. May I just ask how often does she have these flareups and how long do they last? Are her legs completely fine in between? And before going gluten free were they constantly painful or where there normal and flareup times too? Did gluten free diet definitely help? Was she tested since to check if her celiac is under control, if her antibodies are normalised? 

[yuluyouyue]

Also, was MS ruled out? 

[TheFuzz]

I had neurological issues for a long time, adding B vitamins helped a lot(as well as a daily multivitamin).  But 1.5 years ago my swollen feet and ankles suddenly got worse. I could barely walk.  I couldn't even hold a coffee cup.  I'm a physically active guy so it was pretty debilitating.  Anyway, it turns out I have rheumatoid arthritis, which is an immune disease that can go hand in hand with celiac.  I'm 100% no cheat gluten free as well.  I'd suggest having your daughter tested for it.  Now that I'm being treated for it, I'm back to hiking, biking, running, etc.

 

Good luck.

[Sunshine99]

On 10/6/2021 at 4:27 PM, AlohaMaMa said:

Hello and thanks for stopping by!

I have a 12 year old daughter that went un-diagnosed for 10 years showing symptoms in my womb that didn't seem right.

She would kick, strong with both legs even from before birth (not the regular baby kicking!!!). Then after she was born she continued kicking like this from the high chair, the stroller, car-seat, and so on. She would cry uncontrollably and now I wonder if she was better when she was not breastfeeding at times I may not have been "low carb". Then she began eating and from time to time would have fits where she could express that her legs were in immense pain - this was not normal but once again diagnosed as "growing pains" (very triggering!!!) and her stomach pains and continuous constipation resulted in being told year upon year to have her "eat more fruit"...eventually she would be getting x-rays for constipation and I ended up demanding to see a specialist and with one blood test it was determined that she has Celiac Disease. We are both now on a gluten-free and lactose free diet...gluten-free alone didn't improve her symptoms alone but after 6 months gluten-free we dropped the lactose...game changer! Okay so we enjoyed being away from cross-contamination while on "Covid lock-down" since we suspected she was getting a lot of contact from school. Now that school is back in session however she was back in a wheelchair (the walker wasn't enough since her legs were a dead weight). Since it's impossible to get away from gluten we need to know how it's causing her to not be able to walk or shower without Designated Medical Equipment. The day before her legs turned to dead weight she was running laps and playing pickle-ball...she's in good shape and very social then randomly in a wheelchair one day and back to normal a day or two later. Doctors seem to run from us and our weird problems...you can't make this up!!! On the west coast there is very little attention given to Celiac Disease and even less support. Is this Neurological? Could she have a second illness that hasn't been detected yet? Your wisdom on neurological related issues or alike is welcome! 

Love, SB MaMa

Has she seen a rheumatologist? They can run lots of blood work and test for an unbelievable amount of autoimmune diseases. And they work closely with neurologists as well so maybe they can work together to figure it out. In addition to Celiac, My daughter was diagnosed with an autoimmune disease called dermatomyositis, which affects muscles, joints, and skin and can cause the kind of muscle weakness you are describing. You also mentioned skin issues too which it affects. A rheumatologist should be able to do lots of blood work and determine if it’s autoimmune, and work with a neurologist as well. Good luck, my heart goes out to you. Hang in there Mama! 

[AlohaMaMa]

On 10/8/2021 at 8:21 PM, yuluyouyue said:

What an ordeal it must be for you and your daughter. May I just ask how often does she have these flareups and how long do they last? Are her legs completely fine in between? And before going gluten free were they constantly painful or where there normal and flareup times too? Did gluten free diet definitely help? Was she tested since to check if her celiac is under control, if her antibodies are normalised? 

The leg pain comes and goes but when it comes it could be for a few days in a row. With a doctor's appointment on the horizon I have a list of things to "investigate" including MS. Gluten exposure makes it worse however we noticed a big improvement after going lactose free. Only since she returned to exposure at school from home due to covid school closures did it start back up. 

[AlohaMaMa]

On 10/13/2021 at 6:10 PM, Sunshine99 said:

Has she seen a rheumatologist? They can run lots of blood work and test for an unbelievable amount of autoimmune diseases. And they work closely with neurologists as well so maybe they can work together to figure it out. In addition to Celiac, My daughter was diagnosed with an autoimmune disease called dermatomyositis, which affects muscles, joints, and skin and can cause the kind of muscle weakness you are describing. You also mentioned skin issues too which it affects. A rheumatologist should be able to do lots of blood work and determine if it’s autoimmune, and work with a neurologist as well. Good luck, my heart goes out to you. Hang in there Mama! 

Sunshine, We have seen a Rheumatologist briefly who stated that she had concerns...anyhow we are going back in on an actual referral this time with my list of possible illnesses (to rule out or tend to). With all of the neurology in mind I have already begun adjusting her vitamins to include B1, B12, etc. to aide or prevent in line with these related articles:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6412791/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

https://www.hormonesmatter.com/thresholds-and-tipping-points-in-thiamine-deficiency/

 

Short list:

* MS?

Huntington's

Parkinson's

Neuropathy (peripheral)

* Inflammatory Bowel Disease (IBD, not IBS) 

ADHD

 

Longer list:

The most common disorders associated with celiac disease are thyroid disease (Mom had hyperthyroidism during pregnancy) and type 1 diabetes (runs in family on  both sides). Celiac disease is more frequent in those who have the following autoimmune disorders:

Autoimmune Disorder Increased Risk

Addison’s Disease 6%

Arthritis1.5-7.5%

Autoimmune Hepatitis 6-15%

Hashimoto’s Thyroiditis 4-6%

Idiopathic Dilated Cardiomyopathy 5.7%

IgA Nephropathy (Berger’s Disease) 3.6%

Multiple Sclerosis (MS) 11%

Sjogren’s Syndrome 2-15%

Type 1 Diabetes Mellitus 2.4-16.4%

 

[AlohaMaMa]

On 10/12/2021 at 10:43 AM, TheFuzz said:

I had neurological issues for a long time, adding B vitamins helped a lot(as well as a daily multivitamin).  But 1.5 years ago my swollen feet and ankles suddenly got worse. I could barely walk.  I couldn't even hold a coffee cup.  I'm a physically active guy so it was pretty debilitating.  Anyway, it turns out I have rheumatoid arthritis, which is an immune disease that can go hand in hand with celiac.  I'm 100% no cheat gluten free as well.  I'd suggest having your daughter tested for it.  Now that I'm being treated for it, I'm back to hiking, biking, running, etc.

 

Good luck.

The Fuzz,

I agree. I just got her on B1 and complex in order to make sure some common neurology issues are being addressed while we wait to see the Rheumatologist. I am concerned that she may have arthritis or strep or MS or... We are a strict gluten-free household and especially my daughter - she wont eat food made in a facility that handles wheat at all. I am happy to hear you were able to take the reigns on your condition and get back to to your active lifestyle! My daughter was running laps around the school only a few weeks ago and then last weekend we had to take the wheelchair with us (just in case)...its just not right. Can we find a doctor that is looking for a side project? Oh bother.

On 10/8/2021 at 8:33 PM, yuluyouyue said:

Also, was MS ruled out? 

It's high on my list!

[AlohaMaMa]

On 10/6/2021 at 5:32 PM, trents said:

Thank you for the additional information. I probably read too much into your comment about there being no way to avoid gluten when your daughter is at school and I did not realize until you explained this that she was so extremely gluten sensitive. Sounds to me like she may also be allergic to wheat. But I can't help but wonder if something else is going on. I would not totally disregard the possibility that something non-gluten/non-wheat may be going on so I would continue to work with the doctors if I were you and let them do their thing. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3829244/ Note the mention of ataxia.

 

 

Thanks! I will add Ataxia to my short list to review with the rheumatologist. No wheat allergy but can't even be touched by someone that has touched gluten at all. Our doctors don't seem interested in finding the deeper problem - I had to force her General Practitioner to give us a referral to the GI in the first place and get my own x-rays proving we need to do more than another 10 years of eating more fruit. If not for my determination my child would still be eating gluten, wheat, lactose and soy. Mama knows best! XOXO

[yuluyouyue]

9 hours ago, AlohaMaMa said:

Thanks! I will add Ataxia to my short list to review with the rheumatologist. No wheat allergy but can't even be touched by someone that has touched gluten at all. Our doctors don't seem interested in finding the deeper problem - I had to force her General Practitioner to give us a referral to the GI in the first place and get my own x-rays proving we need to do more than another 10 years of eating more fruit. If not for my determination my child would still be eating gluten, wheat, lactose and soy. Mama knows best! XOXO

Hang on in there, dear AlohaMaMa. Once your daughter has a proper diagnosis and treatment options it will get easiser. It does seem to me that the doctors have not been doing their job at all. Testing for MS, for example, is commonly rather straight forward. I had it. MRI, if normal, that's it, no MS. If there are suspect lesions, then spine tap. If that is clear too, it can be ruled out. I hope the doctors you are seeing next will be of more help. Hugs to you and your daughter! 

[ravenwoodglass]

Has she seen a doctor while in the midst of one of the episodes?  If not it might be helpful if a doctor fits her in when the symptoms are the worst. Have they done an electromylogram on her during one of these times? It might be a good idea to do in addition to the MRI. A good neurologist would be the one to do both testing. The electromylogram sounds scarey but the test isn't bad and will be able tell if the nerves are over or under responsive to the stimulus. That was the test that 'proved' to the doctors that something physical was going on with me and everything was not just 'in my head because I wanted to be sick' the flat line on testing of my right leg could not be brushed off and was the reason I had difficulty walking. In my case though the symptoms were constant not a come and go effect. That is why I suggest that the tests be done during an episode. Good luck and I hope she gets some relief and answers soon.

[AlohaMaMa]

On 10/21/2021 at 2:02 AM, ravenwoodglass said:

Has she seen a doctor while in the midst of one of the episodes?  If not it might be helpful if a doctor fits her in when the symptoms are the worst. Have they done an electromylogram on her during one of these times? It might be a good idea to do in addition to the MRI. A good neurologist would be the one to do both testing. The electromylogram sounds scarey but the test isn't bad and will be able tell if the nerves are over or under responsive to the stimulus. That was the test that 'proved' to the doctors that something physical was going on with me and everything was not just 'in my head because I wanted to be sick' the flat line on testing of my right leg could not be brushed off and was the reason I had difficulty walking. In my case though the symptoms were constant not a come and go effect. That is why I suggest that the tests be done during an episode. Good luck and I hope she gets some relief and answers soon.

Thank you for your input. I really appreciate it. That said, it's Murphy's Law that the symptoms hide when we pull into the doctor's office...OMG. OKay so she had episodes the last few weeks and she's in a wheelchair going into the appointment (finally). When the Rheumatologist asks her to walk I think oh great she's walking pretty good fortunately no RA however there were three "concerns" and PT has been recommended which still needs approval by her GA - she has an issue because her joints are overextending. Anyway while that all gets setup and I plan my chess moves toward getting the next referral I purchased a heating food/calf massaging machine for her and I found cheap ones at Walmart - I think I will buy one to keep at the school for visits to the nurse's office. Next is skin, then back to GP, then my trying to talk the doctor into a referral to the Neurologist - it will help that I got to talk to the Rheumatologist about my "list of things I want to rule out" (the short list as not to overwhelm)...one thing I discovered this week is that in relation to my concern about "Ataxia"...there is specifically a Gluten Ataxia (mind blown!!!). We saw a very unhelpful Neurologist for something semi-unrelated a few years ago...what a waste of time! I'm praying for a miracle or at least someone to put people before policy.