Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

GottaSki

Heat Intolerance And Joint Issues

Rate this topic

Recommended Posts

I'm 3 months gluten-free. Have seen some improvement with bloating/gastro issues...am confident this will continue to improve.

Docs are stumped by my EXTREME heat intolerance...it is like my internal thermostat is broken. Anything over 75 or even lower with humidity and I am cooked! In the Winter I ski all day nearly every weekend, Spring/Summer/Fall early in the morning I can bike 20 miles, walk/hike hills with no problem. After 10am (or when the sun shines earlier) I can't walk around the block! I get extremely red in the face and come close to passing out. Can not sit in the direct sun without overheating and coming close to passing out.

Many, many thyroid panels over the years while looking for answers...always the same result "normal".

Symptoms that I've had for years (worsened each year) are the extreme heat intolerance and severe joint stiffness/pain when I wake or sit/lay down for more than 1/2 hour and unexplained weight gain (my weight seems to have started adjusting since going gluten-free) :)

Anyone that has or had heat and/or joint issues...has gluten-free helped? How long were you gluten-free before improvement?

Thanks!!!

Share this post


Link to post
Share on other sites

Maybe heat-induced anaphylaxis? Flushing and feeling like you're going to pass out is a bad sign... it means your cardio-vascular system is involved.

Here's a note on symptoms of anaphylaxis from the Mayo Clinic:

http://www.mayoclinic.com/health/anaphylax...ECTION=symptoms

You should seriously get that checked out... and either avoid exercise when it's hot out or carry an epipen. Anaphylaxis can be life-threatening.

ps - There does NOT have to be an external allergen (like a food allergy)... in some people, heat alone is enough to cause a reaction.

Share this post


Link to post
Share on other sites
Maybe heat-induced anaphylaxis? Flushing and feeling like you're going to pass out is a bad sign... it means your cardio-vascular system is involved.

Here's a note on symptoms of anaphylaxis from the Mayo Clinic:

http://www.mayoclinic.com/health/anaphylax...ECTION=symptoms

You should seriously get that checked out... and either avoid exercise when it's hot out or carry an epipen. Anaphylaxis can be life-threatening.

ps - There does NOT have to be an external allergen (like a food allergy)... in some people, heat alone is enough to cause a reaction.

Share this post


Link to post
Share on other sites

Thanks!

That is one possibility none of my docs or research has come up with. I'll read up on it and bring it up at my next appt.

All thoughts on my mysterious symptoms welcome :).

Share this post


Link to post
Share on other sites
Thanks!

That is one possibility none of my docs or research has come up with. I'll read up on it and bring it up at my next appt.

All thoughts on my mysterious symptoms welcome :).

What about a possible yeast problem? It's not uncommon for those with Celiac to have other problems like Candida Albicans. When your digestional tract is damaged it can allow the bad orginisms to proliferate. Candida can cause alot of sensetivities such as: sense of smell( things like chemicals or smoke you cannot tolerate) and can cause the joint pain that gets worse with the heat. I dunno it's just a thought. <Ted>

Share this post


Link to post
Share on other sites

Thanks Ted!

Another great thought...just remembered we thought I had yeast problems back in the late 80s -- completely forgot that round of strange symptoms -- I'll read up on that again tonight!

Have a great day!

-Lisa

Share this post


Link to post
Share on other sites
I'm 3 months gluten-free. Have seen some improvement with bloating/gastro issues...am confident this will continue to improve.

Docs are stumped by my EXTREME heat intolerance...it is like my internal thermostat is broken. Anything over 75 or even lower with humidity and I am cooked! In the Winter I ski all day nearly every weekend, Spring/Summer/Fall early in the morning I can bike 20 miles, walk/hike hills with no problem. After 10am (or when the sun shines earlier) I can't walk around the block! I get extremely red in the face and come close to passing out. Can not sit in the direct sun without overheating and coming close to passing out.

Many, many thyroid panels over the years while looking for answers...always the same result "normal".

Symptoms that I've had for years (worsened each year) are the extreme heat intolerance and severe joint stiffness/pain when I wake or sit/lay down for more than 1/2 hour and unexplained weight gain (my weight seems to have started adjusting since going gluten-free) :)

Anyone that has or had heat and/or joint issues...has gluten-free helped? How long were you gluten-free before improvement?

Thanks!!!

Have they checked your idoine levels. Read up on Idoine def and see if you have more symptoms. could be the thyroid is normal but in the low range which is too low for you. That happened to me and I now take kelp tablets which are loaded with idoine.

P

Share this post


Link to post
Share on other sites
Have they checked your idoine levels. Read up on Idoine def and see if you have more symptoms. could be the thyroid is normal but in the low range which is too low for you. That happened to me and I now take kelp tablets which are loaded with idoine.

P

Not sure...will check my iodine levels!

Thank you :)

Share this post


Link to post
Share on other sites

Have you tried going casein-free too? Both gluten and casein give me hot flashes (I'm 22) and certain types of gluten makes my joints so sore that it feels like what most people describe as fibromyalgia (which is what my grandma suffers from and i have read that fibromyalgia is a long-term effect of celiac disease). Both also trigger UTIs, which is a candida problem for me and it only flares up after dairy and gluten poisoning. Even so much as a splash of butter will get the symptoms going! My mom's first sign that she was glutened is sore joints and fever-like symptoms (she starts roasting).

Also I went gluten-free a year ago but didn't realize all the cross contamination stuff I had to worry about. Or never worried about BBQ sauce or dressings or soy sauce or anything like that. i had no idea that malt beverages like smirnoff ice and mikes hard lemonade had gluten in them! and the cheap liquors! (hey i was in college and i just thought it was a hangover) When I first when Gluten-Free i was at complete rock bottom: i felt like i was crawling out of my skin and was a complete mess psychologically so i didnt even realize all the GI problems i had. the really horrible stuff definitely improved. Then after i graduated college a year later i had more free time on my hands and started reading books: elisabeth hasselbecks the Gluten-Free diet and one called healthier without week. plus i started checking out website and blogs and this message board. now i am super strict and really careful and i am starting to feel 100% better, like my normal self that had been hiding all my life!

what i am trying to say is the time frame is different for everyone since everyone's symptoms are so different. plus, it depends on how strict you are and you begin to realize there are other intolerances too (like for me it's casein and artificial sweeteners. i havent had a headache since i cut out aspertame

Share this post


Link to post
Share on other sites
On 6/22/2009 at 6:46 PM, GottaSki said:

I'm 3 months gluten-free. Have seen some improvement with bloating/gastro issues...am confident this will continue to improve.

 

Docs are stumped by my EXTREME heat intolerance...it is like my internal thermostat is broken. Anything over 75 or even lower with humidity and I am cooked! In the Winter I ski all day nearly every weekend, Spring/Summer/Fall early in the morning I can bike 20 miles, walk/hike hills with no problem. After 10am (or when the sun shines earlier) I can't walk around the block! I get extremely red in the face and come close to passing out. Can not sit in the direct sun without overheating and coming close to passing out.

 

Many, many thyroid panels over the years while looking for answers...always the same result "normal".

 

Symptoms that I've had for years (worsened each year) are the extreme heat intolerance and severe joint stiffness/pain when I wake or sit/lay down for more than 1/2 hour and unexplained weight gain (my weight seems to have started adjusting since going gluten-free) :)

 

Anyone that has or had heat and/or joint issues...has gluten-free helped? How long were you gluten-free before improvement?

 

Thanks!!!

 

Hello

 

  I diagnosed myself with gluten sensitivity since all my tests came back negative but I am sensitive to it. I have the same problem as you. I am very sensitive to the heat. Can you explain why to me please. I am lost. 

Share this post


Link to post
Share on other sites
9 hours ago, maby said:

I have the same problem with the heat and my face gets so read too. All my tests normal too.

In case Gotta Ski does not see this, I think she found out that she had Mast Cell Activation Disorder or Syndrome.  I hope this helps! 

Share this post


Link to post
Share on other sites
On July 8, 2016 at 0:23 PM, maby said:

I have the same problem with the heat and my face gets so read too. All my tests normal too.

Hi Maby!

It was a very long road after celiac diagnosis, but we have learned conclusively that we have too many mast cells in the mucosal lining of the small intestine which is responsible for non-responsive celiac disease and many autoimmune and allergic type symptoms.

Other things can cause heat intolerance...be sure your thyroid has been correctly evaluated.

Share this post


Link to post
Share on other sites
14 hours ago, GottaSki said:

Hi Maby!

It was a very long road after celiac diagnosis, but we have learned conclusively that we have too many mast cells in the mucosal lining of the small intestine which is responsible for non-responsive celiac disease and many autoimmune and allergic type symptoms.

Other things can cause heat intolerance...be sure your thyroid has been correctly evaluated.

GottaSki......baby!......so lovely to see you on here!  :D  I have a question for you because you are such an expert on this.  The allergic type symptoms, mainly hives, can be caused by too many mast cells in the small intestine?  Do you have to have many allergic symptoms and feel bad or can it just be 1 symptom but, overall,  you feel fine?

Share this post


Link to post
Share on other sites

I have had similar experience...thyroid was a little low (TSH normal but T3 was a little low).  I could not tolerate any prescription for it or iodine/iodide supplementation, broke out in hives.  On my own, I found that Ashwagandha worked wonders to even me out. Stabilized blood pressure, and ups and downs throughout the day. Worth a try, it's relatively inexpensive. I take 1 capsule 3x a day.  Naturopath liked the Ashwagandha idea, also suggested Selenium.  Good luck.

Share this post


Link to post
Share on other sites
17 hours ago, Beverage said:

I have had similar experience...thyroid was a little low (TSH normal but T3 was a little low).  I could not tolerate any prescription for it or iodine/iodide supplementation, broke out in hives.  On my own, I found that Ashwagandha worked wonders to even me out. Stabilized blood pressure, and ups and downs throughout the day. Worth a try, it's relatively inexpensive. I take 1 capsule 3x a day.  Naturopath liked the Ashwagandha idea, also suggested Selenium.  Good luck.

beverage.......I have Hashi's thyroid disease and have been on thyroid hormone for years and tolerate it just fine.  It's funny that you mention Ashwaganda because my thyroid doc gave me some to try for some of the symptoms I had and it was a disaster.  If you read the particulars of it, it can be a GI irritant and it was for me.  Every time I take it, I throw it back up within an hour.  Makes me violently ill. I also had that experience with other herbs so now?  I will not take anything with herbs in it because they just don't agree with me.  I don't know why, other than that they can be a GI irritant.  I do know people who love the stuff and use it without issue but I'm done with it.  :blink:

Share this post


Link to post
Share on other sites

Funny you mention it, but I was having very very slight acid reflux recently, which had completely cleared up after going gluten free.  I backed off the ashwagandha from 3 per day to 2 and it's all good again ... Perfect example of trying anything new ... go slow, start at lowest dose as possible, gradually try more to recommended dose, then back off if too much.  LISTEN TO YOUR BODY!!!  Thanks, Gemini!

Share this post


Link to post
Share on other sites
13 minutes ago, Beverage said:

Funny you mention it, but I was having very very slight acid reflux recently, which had completely cleared up after going gluten free.  I backed off the ashwagandha from 3 per day to 2 and it's all good again ... Perfect example of trying anything new ... go slow, start at lowest dose as possible, gradually try more to recommended dose, then back off if too much.  LISTEN TO YOUR BODY!!!  Thanks, Gemini!

Glad I helped you indirectly!  I always tell people what happened to me because herbs are highly used today but they do not agree with everyone.  I could not understand how I could have gotten so violently ill from them but in hindsight, that is my reaction to anything I ingest that my body just doesn't like.  I am a puker.......Ha, Ha!  :lol:

 

Share this post


Link to post
Share on other sites
On July 14, 2016 at 9:00 AM, Gemini said:

GottaSki......baby!......so lovely to see you on here!  :D  I have a question for you because you are such an expert on this.  The allergic type symptoms, mainly hives, can be caused by too many mast cells in the small intestine?  Do you have to have many allergic symptoms and feel bad or can it just be 1 symptom but, overall,  you feel fine?

So sorry Gem!  Just saw this...don't log on much any more.

I do know folks with primary hives and other allergic type symptoms without any IgE allergies.  If these present in someone with celiac, NCGS or other gastro symptoms, I would highly suggest proper mast cell staining.  This can be done from former endoscopic biopsies.  Unfortunately, finding a gastro willing to order these tests remains tough.  Some immunologists are starting to.

Until mast cell staining becomes commonplace, I don't see how we can prove that too many mast cells within the small intestine are responsible for just one symptom, but I do believe it possible.  After all...I didn't become unable to function until nearly four decades of living life making adjustments as each symptom appeared.

Hugs to you and all my silly pals, Ski

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
What did you find out about your daughter ? My son is 6 and has used the exact same sentence!! He feels like there is a bubble in his throat. He has been complaining on and off for the last year and recently it seems he complains more Ans Wants me to make a doctor appt. he had reflux bad as a baby until about 2.5 and allergies to fomula Ans my milk but since then I thought that all went away. 
  • Blog Entries

  • ×
    ×
    • Create New...