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Family Cluster Of Celiac - The Legacy I Want To Leave Behind

homeschoolmama

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homeschoolmama Newbie
homeschoolmama
Posted

Recently diagnosed with both Celiac and Sjogren's.  The symptom that began my search with the doctors was severe arthritis (I am only 42 yo.)  I was shocked to find out I had these auto-immune diseases and that I have have Celiac long enough to have developed Osteopenia.  I thought the primary symptom of Celiac was stomach and digenstive issues!  Thank goodness for an informed doctor.

 

Both my brothers died in their 30's.  One had diagnosed Celiac the other likely had Celiac but it was never diagnosed formally.  Neither of them stayed 100% gluten free.  One of my brothers died of cancer.  The other developed severe mental illness in the last few years of his life and died of suicide.  I was surprised to learn from my specialist that these are both symptoms and problems of untreated Celiac.

 

Feeling very thankful I had a doctor who thought to test me for this because now I can live gluten free and avoid developing anything more severe.  Feeling thankful as well that as it appears we have a family cluster of Celiac, I can test my children and inform other family members.  We can literally change the trajectory of our family line with this information.  I have accepted a new reality about the legacy I want to leave behind...I am committed to making sure each generation that comes behind me knows our family stories, knows to get tested for Celiac, and knows that with a simple dietary change, they could be extended their lives and choosing health.

 

Look forward to learning from your stories on this forum and improving my health as you do the same.

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MycasMommy Enthusiast
MycasMommy
Posted

Welcome to the board!  I am glad you have gotten a diagnosis and now have an understanding of what has been going on with your family.  You now have the knowledge to protect your children too. I lost 2 inches of height before I ever knew what was going on.  Crazy eh?  I just had my almost adult daughter tested too. The blood tests seem iffy though. The doctor is great and is actively teaching herself about it all.  She has been more than willing to go the extra mile. Just remember that the kiddos should be tested once a year or so if they show up negative.

BlessedMommy Rising Star
BlessedMommy
Posted

Welcome to the board! I like your username. :) I am a homeschool mom. My oldest is in 3rd grade.

How wonderful that you have a firm diagnosis and can now help your family to be aware.

nvsmom Community Regular
nvsmom
Posted

Feeling very thankful I had a doctor who thought to test me for this because now I can live gluten free and avoid developing anything more severe.  Feeling thankful as well that as it appears we have a family cluster of Celiac, I can test my children and inform other family members.  We can literally change the trajectory of our family line with this information.  I have accepted a new reality about the legacy I want to leave behind...I am committed to making sure each generation that comes behind me knows our family stories, knows to get tested for Celiac, and knows that with a simple dietary change, they could be extended their lives and choosing health.

 

The fact that going gluten-free will reduce any future health risks back to normal levels is something that many celiacs seem to miss.  If we are careful with our diet, then we are healthy.  :)  We might still have a slightly higher risk of developing other autoimmune issues but staying gluten-free will help minimize that too.

 

Well said.  :)  Welcome to the board.

 

ps.  My kids are schooled at home too. :)

LauraTX Rising Star
LauraTX
Posted

Welcome to the forum!

 

I am so glad you fully understand the benefits of getting tested and going gluten-free if need be...no better legacy to leave behind than the gift of health and life.

MycasMommy Enthusiast
MycasMommy
Posted

Well we are all just a bunch of home schoolers here! :D  Ditto for this family.

luvs2eat Collaborator
luvs2eat
Posted

I was diagnosed at age 49 after only a month or two of huge digestive issues (unrelenting diarrhea). No one else in my immediate or extended family has it. One by one... my three daughters were diagnosed. Middle daughter was about 27. Her doc told her she was lucky to be diagnosed at such an early age because she would avoid lots of later health problems. She said, "Isn't that like saying it's good luck if it rains on your wedding day? Like what else can you say? It sucks to be you??" Youngest daughter was diagnosed next... and hindsight showed me that the stomach aches she had growing up were real and not just a way to get out of going to school. Hers was so severe and with so many debilitating symptoms, she lost 60 lbs. and through her OWN research and trials and errors (one of her docs said to her, "Oh great... you've been on the internet. Why don't YOU tell ME what you have?") she was able to remove foods (nightshades, oxylates, dairy, and many others) and allow her gut to heal. Oldest daughter was diagnosed at about age 30... while dealing with metastatic breast cancer.

Thank goodness they grew up in a cooking home. Despite all of the difficulties and obstacles, they can cook and feed themselves well!

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Gemini Experienced
Gemini
Posted

Hey!  Good to meet someone else with Celiac and Sjogren's!  :) I think your head is soooooooo in the right place and you will do well because of it.  I have the same attitude, despite having 4 autoimmune diseases. There are times when your positive attitude will be challenged but overall, it is awesome to be able to have so much control over our health and to indeed, choose a healthier lifestyle through diet. 

 

I am not sure if there are family clusters of Celiac as this seems to be the norm with most Celiac's I have met over the past 10 years, including my own family.  Most will tell you they have siblings and parents with symptoms also, which is not surprising as it is a genetic disease.  I wish you luck with spreading the need for testing because many people will push back and not want to hear what you may have to say.  My family have completely ignored my attempts to inform them so I have let that all go.  You cannot save everyone but I hope your own family will be more responsive.  I have a large family on my mother's side and all generations are affected but no one will be tested. Many have multiple autoimmune diseases too. Silly, isn't it?  ;)

 

Welcome to the Celiac Club and I hope you will be a regular on here! 

icelandgirl Proficient
icelandgirl
Posted

Welcome to the board! I love your positive attitude. Please stick around and post some more!

homeschoolmama Newbie
homeschoolmama
Posted
  • Author

Thank you for your welcome and your comments. 

My three children were tested last week for Celiac and today we learned that all three test results were negative.  The doctor recommended no need for further testing unless we observed symptoms.  But is this the advice most of you received?  One of you mentioned getting the children tested each year.  I guess my concern is that I would not know which symptoms to look for since I never experienced any stomach problems myself.  My mom thinks she has Celiac and believes her mom did as well.  So that is 3 generations of it...causing me to want to be on top of it for my children (the fourth generation.)

I appreciate your input!

cyclinglady Grand Master
cyclinglady
Posted

Because I just had anemia as my symptom, our doc checks my daughter for anemia. She has had just one celiac disease test since my dx in March 2013. As long as she does not become anemic and displays no other symptoms, we will test every three years. I am good with that!

nvsmom Community Regular
nvsmom
Posted

First degree relatives should be tested every couple of years, or sooner if they have symptoms, because their chances of getting celiac disease are so much higher - I have heard anywhere between 1 in 10 and 1 in 22, compared to 1 in 133 for most people.

 

There are hundreds of celiac symptoms to keep an eye out for.  This is a pretty comprehensive list: Open Original Shared Link

LauraTX Rising Star
LauraTX
Posted

Thank you for your welcome and your comments. 

My three children were tested last week for Celiac and today we learned that all three test results were negative.  The doctor recommended no need for further testing unless we observed symptoms.  But is this the advice most of you received?  One of you mentioned getting the children tested each year.  I guess my concern is that I would not know which symptoms to look for since I never experienced any stomach problems myself.  My mom thinks she has Celiac and believes her mom did as well.  So that is 3 generations of it...causing me to want to be on top of it for my children (the fourth generation.)

I appreciate your input!

The first step recommended for first-degree relatives of someone with Celiac is toOpen Original Shared Link.  If the genetic test

is positive, then the individual should have antibody screening regularly to help determine if the disease is active.  This should be done Open Original Shared Link. A great way to do this is to get this done with other screening bloodwork at the kid's annual checkup, so it is easy to remember.  
MomBTired Newbie
MomBTired
Posted

Son was homeschooled because of all the undiscovered now discovered medical issues. He decided he will be adopting later in life because he doesn't want his kids to go through anything he has. He suffered so long, it's amazing that he even has a small intestine!

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