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SarahJimMarcy

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SarahJimMarcy Apprentice
SarahJimMarcy
Posted

We are coming up on one year gluten free. Yay us!

My daughter (14) has had a few strange things happen, and from reading what others have posted, it sounds like ataxia.

In one episode, she couldn't move her legs.

Last night, she couldn't move her arms or speak very easily.

Scary for her, and my husband was ready to carry her into the ER.

Having been through the legs episode with her, I wanted to wait 10 minutes, and sure enough, it resolved itself. She described it as her muscles felt like they had been overworked, like a marathon, and she just couldn't get them to move.

In each of these cases, we can track it back to unintentional gluten exposure. If this is ataxia, do we do anything more than what we're doing? Is there any permanent damage or could this escalate to a real dangerous level? Does ataxia happen to different parts of the body? Anything we can do to help her get through it?

Any help and advice would be greatly appreciated.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Ataxia is a loss of balance. What you are describing does not sound like ataxia, IMHO. It would be a good idea to get her to the doctor very soon to be checked out. If it happens again before you can get her into the doctor call an ambulance. Better to be safe than sorry.

rosetapper23 Explorer
rosetapper23
Posted

I agree with ravenwoodglass--this doesn't sound like a gluten-exposure problem (and it doesn't sound like ataxia); however, gluten has been known to cause neurological and muscle problems. This could be something else, though (and I can think of two possibilities), and I agree that your daughter needs to be evaluated very soon by a doctor. Please let us know what happens....

SarahJimMarcy Apprentice
SarahJimMarcy
Posted
  • Author

We are only about an hour from the Mayo. Do you think I should try to get her in there?

ravenwoodglass Mentor
ravenwoodglass
Posted

We are only about an hour from the Mayo. Do you think I should try to get her in there?

I would get her in wherever she can be seen soonest. She might get to Mayo quickest with a referral from her ped if they feel she needs a specialist not available in your city.

UKGail Rookie
UKGail
Posted

There is a woman in our local support group who arrives in a wheelchair. As newbie to the group the only thing I know is that she is under the care of a respected neurologist, who thinks her problems are probably linked to celiac. He is apparently trying to get her walking again, and is not neccessarily anticipating a successful outcome. I'm afraid I don't know if she is newly diagnosed or a celiac with a well-established gluten free diet. I suspect the former though, as the meeting was specifically for old hands to give support to the newbies.

I would definitely take your daughter to see a good neurologist as soon as possible. If you can find one with an interest in celiac disease, then so much the better.

I think I understand what your daughter is saying about her muscles feeling "overworked". I also get chronic fatigue when glutened, and my muscles feel like I have just run a marathon. I will have zero desire to move, and it is really hard work to go anything, even to get up to go to another room. This issue lasts about a week each time. However, I am much older than your daughter, and have been dealing with this symptom at this lower level of severity for a long time. Given your daughter's youth and the severity of her reaction, it is important for her to be thoroughly checked out.

I would be very pleased to hear how you get on with this, and hope to see you post in due course that this distressing symptom has resolved.

Best wishes.

SarahJimMarcy Apprentice
SarahJimMarcy
Posted
  • Author

Well, we ended up at Children's ER today as she had another episode early this morning. They did a bunch of tests and their working guess is that she is low in trace nutrients, especially selenium and zinc, and that thyroid may be an issue. More results to come on Thursday ...

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ravenwoodglass Mentor
ravenwoodglass
Posted

Well, we ended up at Children's ER today as she had another episode early this morning. They did a bunch of tests and their working guess is that she is low in trace nutrients, especially selenium and zinc, and that thyroid may be an issue. More results to come on Thursday ...

I hope they figure out what is going on and she feels better soon. Thanks for the update on how she is doing.

rosetapper23 Explorer
rosetapper23
Posted

Oh, this is good news! I hope that nutritional elements will be the only thing they find. Hooray for good medical care!

SarahJimMarcy Apprentice
SarahJimMarcy
Posted
  • Author

All tests have come back normal and it is the primary care doctor's opinion that it is stress. Being 14, starting high school, having a vision disability and celiac on top of that is too much. We have calls in to therapists. I feel like a terrible parent for not knowing. When I got my diagnosis, I was relieved. But I should have known that is not how a 14 year old would feel.

  • 1 month later...
SarahJimMarcy Apprentice
SarahJimMarcy
Posted
  • Author

I know people can come back to these threads many years later so I thought I would update it. After the ER visit, we had to go follow up with our primary care doctor. He was out that week, so I asked for the most experienced doctor they had available. So it was Dr. Hoffman at Southdale Peds (MN) who said, "I think this is stress. I could send you to more doctors and I will give you some names, but whenever I give someone a life-chainging diagnosis like celiac, I give them therapists names as well." Well, Dr. Hoffman was giving me some very wise advice. We have found a good therapist and it is starting to make a difference. I guess the lesson is do not ignore the psychological element to celiac. I'm really proud of the progress my daughter is making.

rosetapper23 Explorer
rosetapper23
Posted

Thank you so much for the update--I've wondered over the past month if your daughter's problems had been resolved.

It's good to know that she's on the path to good health once again and that you found a caring doctor.

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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