Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten Ataxia Vs. Neurological Problems Due To Nutritional Deficiencies


T.H.

Recommended Posts

GFinDC Veteran

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! :)

Open Original Shared Link

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
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.

Ennis-TX Grand Master
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/forums/topic/91878-newbie-info-101/

^ is full of information for people newly diagnosed

https://www.celiac.com/forums/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.

Open Original Shared Link

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.

Jmg Mentor

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 :)

 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,247
    • Most Online (within 30 mins)
      7,748

    Jbamf8791
    Newest Member
    Jbamf8791
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Zuma888, The antibodies produced in response to gluten are made in the intestines.  When the body is provoked sufficiently, the antibodies overflow out of the intestines and into the blood stream.  Once in the blood stream, the antibodies can be measured with tTg IgA tests.  Three grams of gluten per day for two weeks minimum is enough gluten to make you feel the symptoms of having been glutened, but the antibodies are not in sufficient quantity to be measured in the blood. Ten grams of gluten per day for a minimum of two weeks is required to get the anti gluten antibodies at a high enough level in the blood stream to be measured by tTg IgA tests. So, no, occasional cross contamination or (heaven forbid) intentional cheat days will not be sufficient for tTg IgA testing.  You will still be making antibodies which will still be causing inflammation and damage to the intestines and body.  Histamine is released as part of the immune response to gluten.  High histamine levels lead to food sensitivities, brain fog, and body aches.   The damage done to the gastrointestinal tract affects the absorption of essential vitamins and minerals.  Malabsorption of fats can cause changes in stools.  Insufficient absorption of vitamins and minerals can cause damage to other organs like the thyroid if it can't get enough Selenium, iodine, iron, zinc, and Thiamine.  Brain fog and fatigue can be caused by low Thiamine and other B Complex vitamins.  Vitamin D is needed to regulate the immune system.  One gene is all that's needed to develop Celiac disease.  I know a Celiac diagnosis is a change that can be difficult to get your head around.  Many people go through the five stages of grief.  One stage is "bargaining".  Sounds like you're stuck there.  Every little cheat counts to your detriment.  But sticking to a gluten free diet, makes every meal a success.   Read the comments below the article... Best wishes!  Keep us posted on your progress!
    • Scott Adams
      No, I would not say this at all. If you were diagnosed with celiac disease and were gluten-free for a while, you could have gone into remission. Everyone's body is different, and some celiacs may be able to get regular contamination and not end up with damaged villi and positive antibody tests, while others who ingest tiny amounts will relapse and have full blown symptoms and flattened villi.  Only a full gluten challenge would reveal where you are at this point. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Pablohoyasaxa
      Great  post. The skin issue can be intolerable. I have been taking niacinamide for the past month and have improved with respect to the blistering lesions. 
    • knitty kitty
      I've found taking Niacin Vitamin B 3 in the form that causes flushing (nicotinic acid) helps immensely to clear my skin.  The flushing is harmless and goes away the longer Niacin is taken.  The flushing (vasodilation in the skin) helps the body get rid of the tTg 3 IgA antibodies that cause the blisters.  TTg 2 IgA antibodies are found in the blood and are measured in diagnostic testing for Celiac.  People with Dermatitis Herpetiformis make tTg 3 as well as tTg 2 antibodies.  Niacin Vitamin B3 in the non flushing form niacinamide also works without the flushing, but takes a bit longer.   I also avoid foods containing high levels of iodine because iodine activates the tTg 3 IgA antibodies to become more active and make more blisters.  I avoid kelp (nori, seaweed) and crustaceans,  eggs, dairy products, and iodized table salt.   Niacinamide and Nicotinic acid are water soluble and harmless.  I'd much rather take Niacin than Dapsone with scary side effects.  
×
×
  • Create New...