LisaSan111

In the beginning of my celiac journey; I expected that my biological children may also have celiac disease.  I urged for the whole family to use caution and do a trial gluten free. Because of my super-sensitivity to gluten, we created two kitchens. Now, a decade has gone by.  My 5 children grew up and flew the coop.  Not one of them has opted to be tested or go gluten free, so far as I know, although each is gluten aware more so than I would have been. 

I have one child still at home.  This child just got caught with High IgA gliadin!  Now the odd thing; this child is adopted?!  She is working on going gluten free.  A few tiny mistakes have sent her reeling.  First she was hungry when out and ordered some noodles.   Next day, she called me from school sobbing; her tummy cramps were unbearable.  More recently, she ate tater-tot casserole and felt full for days. As a mother I went from spoil- sport to super smart in a few months!   Now, she says, "I deserve this for the way I treated Mom!"  I feel for her; I can relate to big consequences for little mistakes.  I can also laugh as I did at my stupid mistakes in the beginning.  Who would think that a tater-tot would contain more than potatoes, eggs, and salt?

I would like to encourage other mothers out there.  Do what is right for you and when they get desperate themselves; they will know who to go for to get help.  In the past other parents warned me not to be so demanding as they would rebel.  I found out that when I followed a healthy diet and discouraged them from sodas, junk food, and processed foods.  They grew up and didn't like sodas, heavy sweets and they value making foods from scratch!

Dee



 

I went through very similar symptoms, being misdiagnosed and told it was all in my head for most of my life.  It's not all in our head.  It's what's NOT in doctors' heads.  Doctors don't think of vitamin deficiencies as causes of symptoms like we have.  Doctors are trained to prescribe pharmaceuticals in medical institutions funded by pharmaceutical companies.  
I've experienced the limbs falling asleep.....
Vitamin B12 deficiency neuropathy; a rare diagnosis in young adults: a case report
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5273828/
And...
I've experienced gritty dry eyes and eye pain, light sensitivity....Optic nerve swelling and permanent vision loss occurred in my situation because of delayed diagnosis...
Vitamin B12 deficiency evaluation and treatment in severe dry eye disease with neuropathic ocular pain
https://pubmed.ncbi.nlm.nih.gov/28299439/
And...
Tinnitus and hearing loss...
Therapeutic role of Vitamin B12 in patients of chronic tinnitus: A pilot study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4918681/
And...
Visual loss and optic nerve head swelling in thiamine deficiency without prolonged dietary deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4039400/
 
My "friends" used to call me  Helen (as in Keller) because I had such bad problems with my hearing and vision... I was referred to the Helen Keller Institute for the Blind hospital and even those specialists did not diagnose B12, Vitamin A, and Thiamine deficiencies causing my vision problems.  
I have Bell's Palsy, a type of facial numbness and paralysis, which is linked to B12 deficiency.
I have had dark circles around my eyes and puffy eyelids from B12 deficiency.  
B12 deficiency caused urination urgency problems.
I experienced facial rash, nail, and hair changes...
Cutaneous lesions and vitamin B12 deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2294086/
 
Niacin B3 caused nail changes, especially toe nail changes that look like fungus but it was the start of Pellagra.  I had Casal's necklace, and the doctors still did not diagnose the Niacin deficiency.
Magnesium deficiency caused night terrors.  Iron deficiency caused black lines in my nails.  Riboflavin deficiency caused a rash around my nose and mouth.  Vitamin C deficiency caused skin problems and hair loss.  Thiamine B1 and Biotin B7 deficiency contributed to hair loss.  Thiamine deficiency caused panic attacks and eventually Wernicke's Encephalopathy. 
Big Thing to note is we can have B12 deficiency symptoms BEFORE blood tests show B12 deficiency.  Same for the other vitamins.  Blood tests don't accurately reflect vitamin deficiencies inside the organs and tissues of the body where the vitamins are actually used.  Blood tests for vitamin deficiencies can reflect how much of that vitamin we've consumed in the previous twenty-four to forty-eight hours.  Supplementing with vitamins prior to blood tests for vitamin deficiencies will reflect the vitamin supplements, not the deficiencies in organs and cells.  
B12 deficiency can be reversed by oral B12 supplementation or B12 shots, but remember, it's unusual to have a single vitamin deficiency in Celiac Disease because the absorption of vitamins and minerals are affected by damage done to the small intestine where most vitamins and minerals are absorbed.  
There are eight essential B vitamins.  Our bodies can not make these or store them for long, so we need to consume them every day.  The eight B vitamins all work together, dependent on each other.  B12 needs folate B9 and pyridoxine B6.  Pyridoxine needs riboflavin B2.  Thiamine B1 and Niacin B3 provide energy and enzymes for the other vitamins to work, along with magnesium and iron and other minerals, and Vitamin C. Also, there are four fat soluble vitamins we need, Vitamins A, D, E, and K 2.
Checking for nutritional deficiencies is part of proper follow up care for newly diagnosed Celiacs.  Blood tests do not accurately measure vitamin status, so talk to your doctor about supplementing with vitamins.  Talk to a nutritionist about including nutrient dense foods in the gluten free diet.
Hope my experiences with vitamin deficiencies can help you and others.