Celiac Disease and My Brain and Muscles

[ling27]

     Hi my name is Laura and for over five years my body was a mess.  By the time I realized I had Celiac Disease, it had gone to my muscles and then my brain.  Leaving me with terrible symptoms of migraines, drooling, bloodshot eyes, and so very close to a rupture in my right eye.  My entire body was swelled beyond recognition, and I was unable to walk.  I tried to get the doctors to help me and even begged them. I was told it was all in my head, but I knew that was not true. 

     I would like to continue this later and let others know what I did on my own and actually am still in the process of doing at a later date.   Due to my permanent condition, I am limited with the computer. If they had only listened to me!   

 

[trents]

Welcome to the forum, @ling27!

Have you been officially diagnosed with celiac disease yet?

We're looking forward to supporting you and hearing more of your story. Just take your time as you are able.

[knitty kitty]

Welcome to the forum, @ling27,

I understand what you're going through.  Lots of doctors are not as knowledgeable about Celiac Disease and the need for vitamin  supplementation.  

I've posted some of my experiences in my blog.  Let's compare notes.  I'm limited on my computer use due to eye problems, too.  You're not alone.  

 

[ling27]

Thank you for welcoming me. Yes I have been diagnosed with celiac disease.  Due to the damage it caused I have to live alone because I am over stimulated by noise.  It's not the life I want but it is finally a life, I can live with the coping skills I have learned.  I cannot drive, but live across from the store and the medical center for my PC is just around the bend.  I thought I would share just a few things I have done to see if it can help someone else out there.  I take tumeric for swelling and soak my feet in epsom salts two times a week.  Like I shared before this is just a tip of the iceberg, but due to my condition I cannot concentrate at long periods of time.  Thank you and yes I am totally gluten free, right down to my shampoo. I was actually up out of bed three days after going gluten-free.  Take care my friends, we are not alone, but it's a hard road and I understand. Later!

 

[knitty kitty]

One symptom of Thiamine deficiency is edema in the feet, ankles and legs.  Thiamine is Vitamin B1.  There are eight essential B vitamins that Celiac people have difficulty absorbing sufficient amounts of due to Celiac damage in the small intestine.  The B vitamins cannot be stored for long.  Thiamine runs out first, in as little as three days.  

Has your physician checked for nutritional deficiencies? 

When we remove gluten containing foods from our diets, we are also removing the vitamins added by the manufacturers.  Buy your own vitamins now.  Gluten free processed foods are not required to have vitamins added to them like gluten based products.  The Gluten free diet can be low in B vitamins. 

I became deficient in B vitamins. My doctors said it was all in my head. They did not recognize vitamin deficiency symptoms.  I developed Thiamine deficiency.  It was difficult to think and to move about.  The fatigue was devastating.  I drooled and had difficulty talking.  Deficiency in Riboflavin Vitamin B2 caused migraines.  

There's eight B vitamins.  They need to be taken together because they all work together.  I took extra Thiamine (Benfotiamine) as well as a B Complex supplement.  

Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals while healing.  Celiac Disease causes malabsorption of nutrients.  Doctors don't think about vitamin deficiencies in Celiac, but it really happens.  

Hope this helps!

[ling27]

Thank you so much! I do take B12, but are talking about taking on B vitamin with all of them combined?  I have had my blood work done, but I have found its all a trial with this as not getting much support or knowledge from doctors.

[knitty kitty]

@ling27,

Yes, I'm talking about taking a vitamin supplement with all eight essential B vitamins.  You can take a B Complex in addition to your B12.  

B12 needs other B vitamins to function properly.  Cobalamine B12 needs Folate B 9, Riboflavin B2 and Pyridoxine B 6.  Thiamine B1 is needed as well as the rest.   

If you take just B12 and are low in the other B vitamins that are needed to work with B12, B 12 just doesn't work.  Blood tests are not an accurate measurement of vitamin storage status inside cells where they are utilized.  Routine blood tests usually only test for B12, and maybe Vitamin D, but not for the other dozen vitamins needed as well, not to mention minerals.  

Doctors are required to take twenty hours of nutritional education while in medical schools for seven years.  Mostly vitamin deficiency diseases are thought to be in the past or in starving countries.  So doctors do not recognize vitamin deficiency disease symptoms in the early stages.  Celiac Disease causes vitamin deficiencies because the lining of the small intestine is damaged and unable to absorb nutrients.  We're starving for nutrients, those vitamins our bodies cannot make, and minerals, too.  We may be consuming sufficient calories, but without a sufficient amount of those vitamins, our bodies cannot process the carbohydrates, proteins and fats from our diet and turn them into energy and building blocks for cell repair and for our bodies' health.  Instead, our bodies can store those extra calories as fat to burn for energy, or start burning muscle.  This is High Calorie Malnutrition.  A diet high in carbohydrates requires an additional .5 mg (minimum) of Thiamine B1 to process those carbohydrates.  Benfotiamine, a form of Thiamine, has been shown to promote healing in the intestines. 

Vitamins are needed to decrease Inflammation and regulate the immune system.  Vitamins are needed for cell repair and replacement, so our villi can grow back and absorb nutrients properly for us.  

Gluten containing foods are required to be enriched with vitamins and minerals lost during processing.  Gluten Free facsimile foods are Not required to be enriched with vitamins and minerals.  The Gluten Free diet can be low in the B vitamins.  Talk to your doctor and nutritionist about supplementing with vitamins and minerals while healing.  

[trents]

I would also add that the B vitamins are water soluble so there is no concern with overdosing on them. Excess is just urinated out. Make sure all your vitamins and supplements are gluten free. Costco is a good place to find vitamins and supplements at a reasonable price and reasonable quality. Many or most of their vitamins and supplements are gluten free and will say so on the packaging.

Edited June 30, 2024 by trents

[ling27]

Thank you for the information! I am B shopping tomorrow for sure.