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

I Made An Interesting Discovery Today!


justlisa

Recommended Posts

justlisa Apprentice

For reasons I won't get into here, my full brother and I did not speak for a very long time (family dynamics...sigh). However, approximately 4 years ago, he found me on facebook and sent me a friend request... We've been friends on Facebook ever since...

So, lately, I've been posting a LOT about celiac/gluten intolerance/gluten free/etc. Today, I posted about how my dogs went gluten free when "mom" did.

My brother posted a very long comment about celiacs and how HE was dx 3 years ago... Blew me away!

I mean...once I started figuring out what my problem was (because the docs couldn't), I could easily see SO MANY "gluten" connections with my dad, grandmother, aunt, cousin, etc... (IBS, thyroid, etc, etc).

To hear about his dx...well, it just hit me, you know? I mean I can't tell you how many times I've heard, "there aren't any celiacs in the family"...yada yada yada.

Anyway, I just had to share this...


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



Celiac.com Sponsor (A8-M):



icm Apprentice

Lots of people are in denial about it. They often don't "want to know". (sigh)

squirmingitch Veteran

Wow. What a surprise Lisa. I too see celiacs but they don't want to know about it. When I found out about myself I did look up my nephew sort of long lost b/c of my sister & my horrid relationship. I wanted to let my nephew know especially as he has a child of his own now. I can only give the information & then hope they have enough sense to watch for signs & heed them when/if they come.

When I contacted my nephew, he informed me my niece had died a few months prior. I loved her & we got along very well but she was having a "rough life" & it was hard to get in touch with her. All things considered when everything came to light --- I have no doubt my niece was a celiac.

1desperateladysaved Proficient

I think it is our responsibility to inform family. However, they may not believe us. So, please if you don't talk with your extended family let them know. I sent e-mails to some and papers to others. They might be suffering too. They may have no reason to check for Celiac.

moose07 Apprentice

Not that I would wish celiacs on anyone but it would be kind of nice to have a family member that unerstood my plight. But like other responders said my family is denial. I'm pretty sure my mom has it but she won't get checked for it. That is a neat discovery for you though!

frieze Community Regular

For reasons I won't get into here, my full brother and I did not speak for a very long time (family dynamics...sigh). However, approximately 4 years ago, he found me on facebook and sent me a friend request... We've been friends on Facebook ever since...

So, lately, I've been posting a LOT about celiac/gluten intolerance/gluten free/etc. Today, I posted about how my dogs went gluten free when "mom" did.

My brother posted a very long comment about celiacs and how HE was dx 3 years ago... Blew me away!

I mean...once I started figuring out what my problem was (because the docs couldn't), I could easily see SO MANY "gluten" connections with my dad, grandmother, aunt, cousin, etc... (IBS, thyroid, etc, etc).

To hear about his dx...well, it just hit me, you know? I mean I can't tell you how many times I've heard, "there aren't any celiacs in the family"...yada yada yada.

Anyway, I just had to share this...

And the neuro/psych aspects of celiac may account for some of your relationship issues....

kittty Contributor

I have a cousin who was constantly sick with stomach problems when we were little. She was always going in for medical tests, and going on restricted diets. I don't think they ever found the cause, or if she feels any better today (we live in different countries so rarely talk). My mom has had many medical issues, including hyperthyroid where she lost an extreme amount of weight, but she hasn't had the stomach issues.

I've also been posting articles and things on Facebook, so hopefully they'll see and possibly a lightbulb will go off. If 1 in 100 Caucasians has Celiacs, then statistically there must be at least one more person on my friend list with the illness.


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



Celiac.com Sponsor (A8-M):



Sunny600 Rookie

I think my son, who is 19 years old, struggling with ADD and depression, neither going to school not able to bring himself to apply for jobs, constantly on the toilet and suffering from stomach aches, has it too, but he refuses to be tested. He say s that if he finds out he does, then he'll start thinking he has problems when he really doesn't (yeah, right, like he doesn't already have problems) and he doesn't think he could live without eating gluten. I want to ask his doctor to test him anyway the next time he goes in for ADD meds, but I don,t know if I can do that since he is legally an adult.

I also wonder if my dad, who died of Alzheimer's at the age of 67 might have had it.....but I don't know.

IrishHeart Veteran

I could easily see SO MANY "gluten" connections with my dad, grandmother, aunt, cousin, etc... (IBS, thyroid, etc, etc).

I can't tell you how many times I've heard, "there aren't any celiacs in the family"

Once I was DXed, both my parents' health histories made sense. My Mom went gluten-free at age 84 and is doing very well! She has more energy than I do. Off 9 years of GERD meds, no need for medications except a low dose of thyroid med. No more heart palps or high BP.

Sadly, it's too late for my Dad. He was a walking celiac if there ever was one.

I wrote to my entire extended family about celiac and gluten intolerance and how it was connected to all of their various AI diseases and depression and anxiety, etc. No takers. They saw me almost dying from this thing for 3 years, but I do not think they want to give up gluten, period. I begged my siblings to be tested. Nope. I have stopped nagging.

As for the "there aren't any celiacs in the family!!" line?

Well, SOMEONE has to be DXed first for that to be a valid issue in a family's health history. I was first, but I am not the last, I have no doubt.

Archived

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

  • 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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,033
    • Most Online (within 30 mins)
      7,748

    DeeDeeS
    Newest Member
    DeeDeeS
    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

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.