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

Issues with heat?


Emma R.

Recommended Posts

Emma R. Apprentice

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. 


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



Celiac.com Sponsor (A8-M):



captaincrab55 Collaborator
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

@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
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
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
(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
(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

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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master
(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

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."

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,773
    • Most Online (within 30 mins)
      7,748

    Claudia Hyde
    Newest Member
    Claudia Hyde
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      Soap, water and scrubbing won’t “kill” gluten, but it will physically remove it if done well if you also add a thorough rinse step.
    • Jack Common
    • trents
      Eating out at restaurants is the single most risky environment for cross contamination.  Shared oven racks should be thoroughly cleaned after being used for cooking/baking of gluten containing foods. Better yet, purchase a second set of racks that are used only for one or the other.
    • Brandy969
      This is an expanding question on this topic, I’m not sure where to put it…. I get mixed answers on this but sense I’m Coeliac and my husband isn’t we do still use the same kitchen and cooking utensils-for the most part. I was told by dietitians and GI dr that only soap and water will “kill” the gluten. I am still so confused about this topic, even after being gluten-free for 3 years. I’m sure I’ve accidentally gotten cross contamination, but haven’t knowingly put anything with gluten in my mouth! I probably get more contamination from eating out than in our “shared kitchen”. I make all my bread in a gluten-free bread machine, and he generally uses a toaster oven to heat up gluten containing items. I bake both regular and gluten-free items in our oven, (Not at the same time). I’m constantly wiping down counters and cabinets with soap and water. I keep gluten-free items in a separate cabinet. I don’t seem to be super sensitive to gluten. I was confirmed by blood and on colonoscopy about 15 years ago, but continued eating Gluten not really knowing the damage I was doing to my body.  Can anything besides soap and water “kill” gluten? How hot would an oven have to be before killing it? So any kind of soap and any temp of water omit the gluten? That makes no sense to me if a 500 degree pizza oven won’t kill it. How can a dab of soap and lukewarm water do what heat can’t do?   thank you for putting this where it needs to be if this is the wrong spot!  sincerely needing advice, Brandy J  
    • trents
      I would say the tTG-IGA would be sufficient.
×
×
  • Create New...