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Gluten Ataxia Vs. Neurological Problems Due To Nutritional Deficiencies

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Hi Boringandsafe,

There is a doctors section of the forum where you can search for doctors people like.  Another thing to try is searching for a celiac support group in your area.

I think the main thing is to keep her as gf as possible.  Neuro issues are slow to improve but they can and do get better in time.  A shared oven shouldn't be too problematic IMHO.  I use a shared oven myself.  You can always put aluminum foil  over things or a lid of some sort.  I do that sometimes but even when I don't it hasn't been a problem.  I don't bake gf foods at the same time as gluten food is baking though.

Has she been tested for vitamin levels?

Welcome to the forum! :)

http://www.cureceliacdisease.org/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis/

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015

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1 hour ago, boringandsafe@gmail.com said:

Does anyone have information about getting help for my three year old daughter. Currently I have a non HMO practice that can help. Looking for one that will be covered under insurance. It seems nobody I call even knows what gluten ataxia is let alone where to point me for my daughter to have the physical therapist and a doctor to help with how to guide me besides diet. The above mentioned comments on a gluten free oven. That was not even something I considered. At a restaurant we worked in we ran items through the same oven. Seriously hoping we didn't make that person sick although nothing else was used that was the same. All different utensils. I don't want to make my daughter worse. Can someone help?

Welcome to the board.  Your ped should be able to refer your little one to a physical therapist to help with any issues with balance and coordination if needed.  It is quite possible to recover from ataxia, especially as young as she is. It can take a bit longer than it does to recover from symptoms like stomach issues but chances are very good that she will. 

An oven can be shared with gluten foods as long as you aren't cooking on the racks directly.  You do want to avoid baking with gluten flours when cooking gluten foods though as flour can become easily airborne. You may want to read the Newbie 101 thread at the top of the Coping section as it will have a lot of info for you.

Do keep in mind that since she is diagnosed that all family members should be tested even if they don't seem to have symptoms.

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3 hours ago, boringandsafe@gmail.com said:

Does anyone have information about getting help for my three year old daughter. Currently I have a non HMO practice that can help. Looking for one that will be covered under insurance. It seems nobody I call even knows what gluten ataxia is let alone where to point me for my daughter to have the physical therapist and a doctor to help with how to guide me besides diet. The above mentioned comments on a gluten free oven. That was not even something I considered. At a restaurant we worked in we ran items through the same oven. Seriously hoping we didn't make that person sick although nothing else was used that was the same. All different utensils. I don't want to make my daughter worse. Can someone help?

I myself suffer from extreme issues with how celaic effects my nervous system, I have suffered brain damage, nerve damage, loss of feeling in my hands and feet etc. When I get glutened it gets worse, 2 times I can recall where I lost full motor control and was on the floor. Since you seem to be new to this I will share a few links

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

^ is full of information for people newly diagnosed

https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

^ Shopping help

I am going to ask a few things has your daughter gotten a diagnosis for celiac disease with the full blood panel and endoscope biopsy? If not you need to stay on gluten and get these done for a official diagnosis. A offical one will help in future with school programs and medical assistance in the future and going back on it later to get the test is a nightmare.

I have a article that I found that covers some things on gluten ataxia a bit controversial but it will help with some understandings of a few perspectives and the gluten effects on the body, brain and nervous system.

http://www.ataxia.org/events/2013-Presentations/Sunday/Alaedini_2013.pdf

We normally suggest a whole foods diet when starting a gluten-free diet, this way you avoid contamination and know what your putting in your body, this is very helpful when trying to find other issues. Many with celiac disease with our damaged intestines  develop different nutrient deficiencies and or allergies/intolerance to certain foods. I might suggest talking to a dietician about developing a diet and helping set up meal plans. Testing for allergies and deficiencies is also a suggestion if you can.

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Welcome B&S :)

I can only wish you good luck on your search for a doctor. On this:

14 hours ago, boringandsafe@gmail.com said:

The above mentioned comments on a gluten free oven

I don't think you should worry too much. Reading this site it's clear that people differ in their sensitivities. I have neuro symptoms that have abated after following a gluten-free diet despite living in a shared kitchen. The tips in the newbie thread regarding wooden spoons, scratched pans etc should be sufficient for most of us. As GFinDC has said, neuro symptoms may take time to abate,but it would be only if they persist that you'd need to look at more comprehensive measures such as taking the entire family gluten-free?

Best of luck to you and your daughter :)

 

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