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Mermaid's Mom

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Mermaid's Mom Enthusiast

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!


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ravenwoodglass Mentor

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
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
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
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
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
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.........


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Mermaid's Mom Enthusiast
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
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!  ;)

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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