Jump to content

  • 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

Who knew?!?

Mermaid's Mom

Recommended Posts

Mermaid's Mom Enthusiast
Mermaid's Mom
Posted

I decided to go Gluten Free out of support for my daughter and because I do struggle with digestive issues and my energy level isn't consistent.   I expected that I would feel better but I didn't truthfully expect a BIG difference.  In the month that I have been gluten-free I have twice consumed ONE bite of Gluten foods (a pastry once and then a bite of a mini muffin) because I had a brain fart and wasn't thinking.  Both times within 8-10 hours the stabbing stomach pains returned and irritability etc even though mentally I never gave either bite another thought.  I thought the first time may have just been a coincidence but I realize now the connection.   I have also had painful carpal tunnel for years.  Two days ago someone asked for an update on my daughter and I told her that she is now Gluten Free.  She remarked that she has been gluten-free for a few years and that she used to have painful wrists and now it is just gone.  I must be an inner cynic because I still assumed that her issues were not true carpal tunnel? LOL  The very next day I was grocery shopping with my daughter and when she picked up items she would wince and for the first time ever complained about the shooting pains in her wrists.  

I am researching and reading about this so much now and I read about infertility and all these issues connected to gluten intolerance and I am SHOCKED that potentially I have been struggling with Gluten all this time and just really had no idea!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Celiac is genetic. That is why it is advised that all first degree relatives of folks diagnosed get tested before they go gluten free. If you have other family members who haven't been tested it would be best to have them blood tested before they go gluten free. You may want to consider going back to eating gluten for a bit so you can be tested.

Gemini Experienced
Gemini
Posted
16 hours ago, Mermaid's Mom said:

I decided to go Gluten Free out of support for my daughter and because I do struggle with digestive issues and my energy level isn't consistent.   I expected that I would feel better but I didn't truthfully expect a BIG difference.  In the month that I have been gluten-free I have twice consumed ONE bite of Gluten foods (a pastry once and then a bite of a mini muffin) because I had a brain fart and wasn't thinking.  Both times within 8-10 hours the stabbing stomach pains returned and irritability etc even though mentally I never gave either bite another thought.  I thought the first time may have just been a coincidence but I realize now the connection.   I have also had painful carpal tunnel for years.  Two days ago someone asked for an update on my daughter and I told her that she is now Gluten Free.  She remarked that she has been gluten-free for a few years and that she used to have painful wrists and now it is just gone.  I must be an inner cynic because I still assumed that her issues were not true carpal tunnel? LOL  The very next day I was grocery shopping with my daughter and when she picked up items she would wince and for the first time ever complained about the shooting pains in her wrists.  

I am researching and reading about this so much now and I read about infertility and all these issues connected to gluten intolerance and I am SHOCKED that potentially I have been struggling with Gluten all this time and just really had no idea!

It is such an epiphany moment when you realize how many of your little problems are connected to gluten.  Same thing happened to me after I was diagnosed and went gluten free.  Of course, my family think I am insane and apparently prefer to have all their little problems forever, rather than go gluten free.  My sister has carpal tunnel and wears a brace at night when sleeping. She will not even entertain the notion she may have Celiac also.  When you think about it, it all boils down to widespread inflammation when you eat gluten and shouldn't be.

notme Experienced
notme
Posted
2 hours ago, Gemini said:

It is such an epiphany moment when you realize how many of your little problems are connected to gluten.  Same thing happened to me after I was diagnosed and went gluten free.  Of course, my family think I am insane and apparently prefer to have all their little problems forever, rather than go gluten free.  My sister has carpal tunnel and wears a brace at night when sleeping. She will not even entertain the notion she may have Celiac also.  When you think about it, it all boils down to widespread inflammation when you eat gluten and shouldn't be.

gem:  MY BROTHER FINALLY JUMPED ONBOARD THE gluten-free TRAIN!!!!!!  :D  i think that watching me navigate the gluten-free diet gave him the conviction he needed to try it.  he is amazed at how many things don't bother him when he eats gluten-free - doctors gave him every diagnosis you can think of before he went to a gi doc who connected the dots for him!  i'm pretty darn happy and so tired of watching him chase his tail.  now, if i could ever get through to my (very angry/exhausted/sick all the time) sister............. after all, we (supposedly) have the same mom & dad (maybe she knows something i don't lolz ;) )

 

Jmg Mentor
Jmg
Posted
3 hours ago, Gemini said:

It is such an epiphany moment when you realize how many of your little problems are connected to gluten. 

Absolutely, that's exactly the right term. I'd go so far as to say my life divides between the period before I realised and afterwards, because once I had an explanation, so many things fell into place. 

I had to make myself stop telling every random person I spoke to about the dangers of gluten :D

 

Gemini Experienced
Gemini
Posted
50 minutes ago, notme! said:

gem:  MY BROTHER FINALLY JUMPED ONBOARD THE gluten-free TRAIN!!!!!!  :D  i think that watching me navigate the gluten-free diet gave him the conviction he needed to try it.  he is amazed at how many things don't bother him when he eats gluten-free - doctors gave him every diagnosis you can think of before he went to a gi doc who connected the dots for him!  i'm pretty darn happy and so tired of watching him chase his tail.  now, if i could ever get through to my (very angry/exhausted/sick all the time) sister............. after all, we (supposedly) have the same mom & dad (maybe she knows something i don't lolz ;) )

 

So....a miracle has happened in your family????????  I wish my brother hadn't been so deep in denial because maybe he would still be alive today.  I am so happy for you!  Isn't it amazing to see validation and "that look" on a family members face when they finally get it?   :)

Your sister sounds just like mine.  Angry and tired all the time. Says she couldn't possibly have Celiac because her stomach doesn't hurt. I guess the other 50 symptoms she has don't count.........:blink:

Gemini Experienced
Gemini
Posted
45 minutes ago, Jmg said:

 

I had to make myself stop telling every random person I spoke to about the dangers of gluten :D

 

Ha, Ha!  I did the same thing.  I guess when you come back from the brink just by changing your diet, it seems so miraculous that you have to share the knowledge.  Except that many people don't want to hear it. I know people who are basically unable to work and lead a normal, fun life because of their health issues but they will not get tested or clean up their diet. That is something I will just never understand in a million years.........

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

Celiac.com Sponsor (A8-M):


Mermaid's Mom Enthusiast
Mermaid's Mom
Posted
  • Author
2 hours ago, Gemini said:

Ha, Ha!  I did the same thing.  I guess when you come back from the brink just by changing your diet, it seems so miraculous that you have to share the knowledge.  Except that many people don't want to hear it. I know people who are basically unable to work and lead a normal, fun life because of their health issues but they will not get tested or clean up their diet. That is something I will just never understand in a million years.........

I am AWFUL for this!  Now that I am "enlightened" I feel it is my duty to tell EVERYONE! LOL!.    We really do live in a society where people would rather take meds than change their diets.   My own personal story is not earth shattering enough to change anyone's mind but I am telling you Gluten was literally killing my daughter.  Week by week we just kept losing more of her.  Knowing that I feel compelled to tell everyone to go gluten-free if they have ANY issue from schizophrenia to dandruff! 

Gemini Experienced
Gemini
Posted
On 3/30/2017 at 8:48 PM, Mermaid's Mom said:

I am AWFUL for this!  Now that I am "enlightened" I feel it is my duty to tell EVERYONE! LOL!.    We really do live in a society where people would rather take meds than change their diets.   My own personal story is not earth shattering enough to change anyone's mind but I am telling you Gluten was literally killing my daughter.  Week by week we just kept losing more of her.  Knowing that I feel compelled to tell everyone to go gluten-free if they have ANY issue from schizophrenia to dandruff! 

We get what you are saying even if the rest of the wheat eating world doesn't!  ;)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    2. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    3. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    4. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
    5. Scott Adams
      - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,912
    • Most Online (within 30 mins)
      7,748
    journaljenny
    Newest Member
    journaljenny
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.