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Issues with heat?

Emma R.

By Emma R.
in Coping with Celiac Disease

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Emma R. Apprentice
Emma R.
Posted

I have been diagnosed with Celiac for 6 months now. Almost all my symptoms are gone and I finally feel back to normal. But one random issue I have is heat. Being outside in direct sunlight makes me feel so sick. I will be super nauseous and my stomach will churn for about an hour or longer afterward. It makes me really tired and just a general malaise. It doesn't seem to make a difference if I'm exercising or not. Or wether or not i've been drinking water. I thought maybe it was a vitamin deficiency. But it doesn't seem to make a difference either.  When I've researched it I haven't found anything. I even asked my doctor as she didn't have any idea either. Anyone experienced something similar? I have no clue what it could be or if it's just a lingering symptom. 

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captaincrab55 Collaborator
captaincrab55
Posted
3 hours ago, Emma R. said:

I have been diagnosed with Celiac for 6 months now. Almost all my symptoms are gone and I finally feel back to normal. But one random issue I have is heat. Being outside in direct sunlight makes me feel so sick. I will be super nauseous and my stomach will churn for about an hour or longer afterward. It makes me really tired and just a general malaise. It doesn't seem to make a difference if I'm exercising or not. Or wether or not i've been drinking water. I thought maybe it was a vitamin deficiency. But it doesn't seem to make a difference either.  When I've researched it I haven't found anything. I even asked my doctor as she didn't have any idea either. Anyone experienced something similar? I have no clue what it could be or if it's just a lingering symptom. 

Hi EmmaR,  Did the Doctor check your Thyroid?

knitty kitty Grand Master
knitty kitty
Posted

@Emma R.,

It IS a vitamin deficiency!  It's Thiamine B 1 deficiency.

Thiamine deficiency occurs more often in the summer because sunlight (ultraviolet light) is stressful to the body.  More thiamine is required when we're under physical or emotional stress.

Symptoms of Thiamine deficiency include nausea, and digestive upsets, and fatigue.  

I felt as limp as a wet rag if I went outside when I had Thiamine deficiency.  I also had deficiencies in the other B vitamins as well.  Celiac malabsorption causes problems for absorbing most nutrients.  

Photosensitivity occurs with deficiencies in some of the other B vitamins.  Cobalamine B12 deficiency caused splotchy freckle like discoloration on my face and arms and legs.  Niacin B3 deficiency, Pellagra, caused a skin discoloration and blistering, then crusting skin.  Ew!  Bright sunlight can damage the eyes, too, so wear shades.

Ask your doctor for an Erythrocyte Transketolase test to determine Thiamine utilization.  Discuss supplementation with vitamins and minerals while you are healing.  Doctors can administer Thiamine by IV.  Thiamine (Benfotiamine) supplements can be used for correcting deficiencies, too.  High doses are better to correct Thiamine deficiency (500 - 2000 mg/day).  

Dr. Lonsdale explains more...

http://www.hormonesmatter.com/beriberi-the-great-imitator/

 

Emma R. Apprentice
Emma R.
Posted
  • Author
11 hours ago, captaincrab55 said:

Hi EmmaR,  Did the Doctor check your Thyroid?

Yes, I was actually diagnosed with hypothyroidism right before my celiac. But I’m on medication and my blood test show it’s regulated. But could it be a symptom of that? 

Emma R. Apprentice
Emma R.
Posted
  • Author
8 hours ago, knitty kitty said:

@Emma R.,

It IS a vitamin deficiency!  It's Thiamine B 1 deficiency.

Thiamine deficiency occurs more often in the summer because sunlight (ultraviolet light) is stressful to the body.  More thiamine is required when we're under physical or emotional stress.

Symptoms of Thiamine deficiency include nausea, and digestive upsets, and fatigue.  

I felt as limp as a wet rag if I went outside when I had Thiamine deficiency.  I also had deficiencies in the other B vitamins as well.  Celiac malabsorption causes problems for absorbing most nutrients.  

Photosensitivity occurs with deficiencies in some of the other B vitamins.  Cobalamine B12 deficiency caused splotchy freckle like discoloration on my face and arms and legs.  Niacin B3 deficiency, Pellagra, caused a skin discoloration and blistering, then crusting skin.  Ew!  Bright sunlight can damage the eyes, too, so wear shades.

Ask your doctor for an Erythrocyte Transketolase test to determine Thiamine utilization.  Discuss supplementation with vitamins and minerals while you are healing.  Doctors can administer Thiamine by IV.  Thiamine (Benfotiamine) supplements can be used for correcting deficiencies, too.  High doses are better to correct Thiamine deficiency (500 - 2000 mg/day).  

Dr. Lonsdale explains more...

http://www.hormonesmatter.com/beriberi-the-great-imitator/

 

I was taking a vitamin b complex vitamin for a few weeks. I didn’t notice any difference. But my doctor did labs to check all my levels. My b was over x2 what it was supposed to be. So she had me stop taking it. I have had the issue before and after taking it. Is the thiamine the same as the b vitamin? 

knitty kitty Grand Master
knitty kitty
Posted
(edited)

Blood tests for vitamin levels are not accurate.  They reflect how much of a vitamin has been consumed in the previous twenty-four hours.  Vitamin supplements should be discontinued six to eight weeks prior to blood tests, otherwise the unabsorbed supplements in the bloodstream be measured. 

Blood tests of vitamins do not reflect how well the vitamins are being utilized inside the cells of organs and tissues.  

You can have "normal" blood levels and still have vitamin deficiency symptoms.

A more informative test for Thiamine deficiency is the Erythrocyte Transketolase test which measures how well thiamine is used as an enzyme.

Vitamin deficiencies occur in malabsorption syndromes like Celiac Disease.  

There are Eight B vitamins.  They all need each other to function properly.  

High levels of B12 Cobalamine can mean there's an underlying Folate B 9 deficiency.  The Folate deficiency needs to be corrected.

Thiamine B 1 deficiency can also affect how other vitamins are utilized by the body.  Thiamine provides energy and creates enzymes with other B Complex vitamins. 

Pyridoxine B 6 is needed to work with B12 Cobalamine and Folate B 9.  Pyridoxine B 6 deficiency is common in CeD.  

Riboflavin B 2 needs Thiamine B 1 to make enzymes in order to help other vitamins like B12 Cobalamine and Folate function properly.

Thiamine needs Niacin B3 to digest our food and turn it into energy. 

Biotin B 7 and Pantothenic acid B 5 are needed for cell repair and proper functioning.  

Minerals like magnesium, zinc, potassium and calcium are needed for enzymes to help cells function properly.

Doctors, out of seven years of medical school, get about twenty-four hours of education in vitamins and nutrition deficiencies.  They are taught nutritional deficiencies happen in starving third world countries.  

The typical American Diet can produce High Calorie Malnutrition.  If a diet high in carbohydrates is eaten without a corresponding increase in vitamins (especially Thiamine), high calorie malnutrition occurs.  There's sufficient calories consumed, so there's no starving seen, but there are not sufficient vitamins, particularly Thiamine, to turn the carbohydrates into energy for our cells to function properly.

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

The best way to tell if you have a Thiamine deficiency is to supplement with high doses of Thiamine (500 mg several times a day).  Improvement should be seen within an hour to several days.  I had improvement within an hour of taking Thiamine.  A B Complex supplement should also be taken.  

The World Health Organization has a field test for Thiamine deficiency.  Can you rise from a squat without assistance?  I could not.  

My doctors were clueless about vitamin deficiencies, too.  Being a microbiologist, I have done lots of research on vitamin deficiencies in CeD.  Correcting vitamin deficiencies has helped me heal and recover from CeD.

Edited by knitty kitty
Typo correction
cristiana Veteran
cristiana
Posted
(edited)
On 9/24/2023 at 9:53 PM, Emma R. said:

I have been diagnosed with Celiac for 6 months now. Almost all my symptoms are gone and I finally feel back to normal. But one random issue I have is heat. Being outside in direct sunlight makes me feel so sick. I will be super nauseous and my stomach will churn for about an hour or longer afterward. It makes me really tired and just a general malaise. It doesn't seem to make a difference if I'm exercising or not. Or wether or not i've been drinking water. I thought maybe it was a vitamin deficiency. But it doesn't seem to make a difference either.  When I've researched it I haven't found anything. I even asked my doctor as she didn't have any idea either. Anyone experienced something similar? I have no clue what it could be or if it's just a lingering symptom. 

 When I was a teenager  I suffered from a lot of migraines which left me with a headache, light sensitivity and very nauseous.   I found certain light conditions triggered and exacerbated the issue, particularly strip lighting, and sun shining through a window in a stuffy classroom.

Since going gluten free I've had a type of migraine from time to time which doesn't really give me a really bad headache, more a feeling of nauseousness with neck and pain stiffness.   I think the trigger in that case is looking at a screen with my head and neck in a bad position, but the nauseousness was just the same feeling I had when I was younger.  

Do you have any headache symptoms too?  Any sensitivity to looking at light?  I'm just wondering if light is the issue, rather than heat?

 

Edited by cristiana
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knitty kitty Grand Master
knitty kitty
Posted
(edited)

Thiamine intake is related to migraines.  High dose Thiamine has been shown to lower the occurrence of migraines.  

I used to get chronic migraines with light sensitivity, nausea, and vomiting.  Since taking high dose Thiamine, I rarely get them anymore.

References:

Dietary intake of thiamine and riboflavin in relation to severe headache or migraine: A cross-sectional survey

https://pubmed.ncbi.nlm.nih.gov/36047917/

And...

Oral High-Dose Thiamine Improves the Symptoms of Chronic Cluster Headache

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932500/

 

P.S. I do still get Opthalmic Migraines caused by looking at digital screens:  computer screens, phone screens, tablet screens, even my flat screen television.   My ophthalmologist explained the optic nerve gets overstimulated by the refresh rate (flashing) and shuts down, so my vision fades out for hours.

Edited by knitty kitty
Add more information
cristiana Veteran
cristiana
Posted

Yes, I get this too. My central vision sparkles for about 10 minutes then returns, smartphones being the biggest trigger.  So I don't have one - I feel a complete dinosaur!

 

"P.S. I do still get Opthalmic Migraines caused by looking at digital screens:  computer screens, phone screens, tablet screens, even my flat screen television.   My ophthalmologist explained the optic nerve gets overstimulated by the refresh rate (flashing) and shuts down, so my vision fades out for hours."

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