Thyroid problems, effects of celiac, or something else?

[Lou24]

Hi!

I am not sure if this is the right place to post, but thought I'd try. Thanks for time in advance!

I am a 20 y/old woman, diagnosed with celiac January 2022. I had 4 years of symptoms which I was told by family and doctors, was just in my head or due to stress. Until finally getting tested and then confirmed celiac by endoscopy. 

There were two incidents pre-diagnosis of celiac where I went to the ER. Once for eye-pain combined with tinnitus (2018). My eyes felt gritty and hurt. The doctor checked my vision and said I was fine so I left it at that. Other time in 2020, I went to the ER because my face went completely numb and tingly. They brought me in but ultimately sent me home with a panic attack. 

I have had pins and needles in my feet, legs, arms and hands; often waking me up from sleep/causing night terrors since I was at least 15 (pain or pins and needles worse at night). My extremities go completely numb in sleep, to the point where it feels as if I am touching another persons arm etc. I'll wake up slamming parts onto floor or walls trying to wake them up, which is quite terrifying. 

For the past two years, I have had facial dermatitis, which has slightly gone away besides redness. This redness has spread to the majority of my face. I have swollen eyes/eyelids (which are now starting to look veiny, and my dark circles, which have been present since I was a young kid, are getting worse combined with discoloration), sensitivity to light, eye pain, fatigue; and my joints will randomly throb/feet will feel as if they are burning. 

My cuticles/proximal nail folds have gone thin, tearing easily; and light, black lines have appeared (along with purple reddish color different from rest of skin). Patches of hair on body have stopped growing, and hair on head has thinned (generally all over, but also slightly on each side of front hairline). Dry skin, persistent urination, toenail fungus. My feet and hands are very cold majority of time, and when I try to warm up with heating pad, this sometimes will cause pain. 

I am still paying off my endoscopy (about $1,000 dollars left to go). I don't trust doctors because some delayed results and explanations even though I felt something was wrong. I started telling myself symptoms weren't real or were normal. However, I was right, and the issue was celiac. I have since gone gluten free, and abdominal pain/diarrhea has gone away, except when I accidentally contaminate. 

Nevertheless, symptoms regarding pins and needles, brain fog, fatigue, skin and hair; have persisted or escalated. I don't know what to do, or what to get tested.

I really don't have a lot of money, and am unemployed at the moment, so I want to see if anyone has similar experiences, and could recommend what I should get tested for, if anything? Or what my options are? I don't want to seem dramatic, but I'm also tired of these symptoms!

I apologize for extremely long post, but appreciate any and all ideas/responses. 

Thanks!

[Wheatwacked]

Welcome to the forum. To me it sounds like multiple vitamin deficiencies. Doctors are taught to treat diseases but not to recognize simple nutrition deficiencies.  Thyroid problems could be a lack of enough iodine. The American diet has half as much iodine as in 1970. Prescriptions of Thorazine has increased and there was a 242% increase in breast cancer from 1970 to 2014 The breast cancer epidemic: 10 facts.  Celiac Disease is a disease of malabsorption and treated in two stages. A gluten free diet and replenishment of the vitamins and minerals. There are 10 commonly associated with and close to twenty absorbed in the small intestine that may be affected. In addition, when you stop eating wheat products you lose the vitamins and minerals that they are fortified with. To get a head start, try a multivitamin that has >100% RDA of most of them, Geritol Multivitamin is one that I know worked for me.  No vitamin will have more than 100 mg of potassium, you have to get it in food. 100% DV of potassium is 4700 mg. Choline, B12, B6 and folate work together to control homocysteine, an indicator of vascular inflammation, but most Americans eat less than the recommended 4 eggs or 3 ounces of liver or 15 ounces of steak or 10 cups of cooked broccoli every day for the recommended amount of choline. It is better to get all your essentials from food but supplementing the ones you can, at least while your gut is healing may help.

[Lou24]

5 minutes ago, Wheatwacked said:

Welcome to the forum. To me it sounds like multiple vitamin deficiencies. Doctors are taught to treat diseases but not to recognize simple nutrition deficiencies.  Thyroid problems could be a lack of enough iodine. The American diet has half as much iodine as in 1970. Prescriptions of Thorazine has increased and there was a 242% increase in breast cancer from 1970 to 2014 The breast cancer epidemic: 10 facts.  Celiac Disease is a disease of malabsorption and treated in two stages. A gluten free diet and replenishment of the vitamins and minerals. There are 10 commonly associated with and close to twenty absorbed in the small intestine that may be affected. In addition, when you stop eating wheat products you lose the vitamins and minerals that they are fortified with. To get a head start, try a multivitamin that has >100% RDA of most of them, Geritol Multivitamin is one that I know worked for me.  No vitamin will have more than 100 mg of potassium, you have to get it in food. 100% DV of potassium is 4700 mg. Choline, B12, B6 and folate work together to control homocysteine, an indicator of vascular inflammation, but most Americans eat less than the recommended 4 eggs or 3 ounces of liver or 15 ounces of steak or 10 cups of cooked broccoli every day for the recommended amount of choline. It is better to get all your essentials from food but supplementing the ones you can, at least while your gut is healing may help.

Thank you! I appreciate your help and recommendations. 

[trents]

I agree with Wheatwacked. Many or all of the symptoms you describe sound like vitamin/mineral deficiencies to me. Celiac disease, by definition, involves inflammation from the immune system attacking the lining of the small bowel, the "villi" where all of the nutrition from the food we eat is absorbed. This wears down the villi so they no longer efficiently absorb nutrients from food. It sounds like from the seriousness and sheer number of symptoms you are experiencing that this has been going on longer than you realize. The symptoms appeared four years ago but that typically happens after the villi have already been taking a hit for sometime, long enough to create deficiencies. Many people are "silent celiacs" who have no symptoms until the damage to the villi becomes severe.

[knitty kitty]

@Lou24,

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 deficiency 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 deficiencies 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.

😺

Edited April 13, 2022 by knitty kitty
Typo correction

[Jays911]

Just now, Jays911 said:

 

I am up to four autoimmune diseases plus Ataxia. Started with hypothroidism 30 years ago. Diagnosed with celiac 8 years ago, then gout, and rheumatoid arthritis. These diseases tend to cluster. From your systems, I would have them check your thyroid. If you have any balance issues, check your D3 and magnesium. Hang in there. Blessings. 

[knitty kitty]

1 hour ago, Jays911 said:

I am up to four autoimmune diseases plus Ataxia. Started with hypothroidism 30 years ago. Diagnosed with celiac 8 years ago, then gout, and rheumatoid arthritis. These diseases tend to cluster. From your systems, I would have them check your thyroid. If you have any balance issues, check your D3 and magnesium. Hang in there. Blessings. 

Jays, 

I thought you might be interested in these articles.  They show that gout and rheumatoid arthritis can be improved with Thiamine supplementation.

Long-Term Treatment by Vitamin B1 and Reduction of Serum Proinflammatory Cytokines, Hyperalgesia, and Paw Edema in Adjuvant-Induced Arthritis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102562/

And...

https://www.hormonesmatter.com/juvenile-rheumatoid-arthritis-an-unusual-treatment/

And...

Cross-sectional analysis of nutrition and serum uric acid in two Caucasian cohorts: the AusDiab Study and the Tromsø study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4459487/