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Family celiac too?

Jaffy

By Jaffy
in Related Issues & Disorders

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Jaffy Rookie
Jaffy
Posted

I just joined.  Haven't explored, yet.  I am 75, I have only been diagnosed 1 1/2 yrs.  Three of my 4 children from birth were "wheat + milk allergy etc" now one or more has digestion problems, infertility, miscarriages, bipolar, nervous breakdown, well you get the picture.  I have 9 grandchildren my 10th one was just "born" already dead with Down's syndrome, others: severe malnutrition from birth to 3 months until some formula agreed, mild anemia, bones beginning to break, one is VERY obese. Of course I didn't list everything.  I had no idea about some of these being linked to celiac until after Madison was "born" in April.  Is this true?  Thank you. Jaffy

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cyclinglady Grand Master
cyclinglady
Posted

Welcome to the forum!  
 

It is true.  All those things you listed (miscarriage, kids not thriving at birth, mental illness, obesity, osteoporosis,  infertility) have been linked to untreated celiac disease.    Researchers  have identified the very genes that could turn into celiac disease.  What triggers celiac disease initially is unknown.  Some suspect a virus, or bacteria, others think stress like a death can cause it.  Once “turned on” gluten is the actual trigger that sets off the autoimmune reaction.  
 

It can develop at any age, but most often it begins when a baby is introduced to wheat.  Symptoms can be mild or severe.  This impedes a delay in most celiacs getting a diagnosis.  
 

All first degree relatives (parents, siblings, children) should be tested for celiac disease.  A first degree family member has a 44% chance that they have celiac disease, according to a recent Mayo Clinic Study.  Encourage your siblings and your children to get tested.  Encourage your grandchildren to get tested too, especially if they have symptoms.  
 

How are you doing?  Getting a diagnosis so late in life (I was in my 50’s) can be devastating.  

Jaffy Rookie
Jaffy
Posted
  • Author
7 minutes ago, cyclinglady said:

Welcome to the forum!  
 

It is true.  All those things you listed (miscarriage, kids not thriving at birth, mental illness, obesity, osteoporosis,  infertility) have been linked to untreated celiac disease.    Researchers  have identified the very genes that could turn into celiac disease.  What triggers celiac disease initially is unknown.  Some suspect a virus, or bacteria, others think stress like a death can cause it.  Once “turned on” gluten is the actual trigger that sets off the autoimmune reaction.  
 

It can develop at any age, but most often it begins when a baby is introduced to wheat.  Symptoms can be mild or severe.  This impedes a delay in most celiacs getting a diagnosis.  
 

All first degree relatives (parents, siblings, children) should be tested for celiac disease.  A first degree family member has a 44% chance that they have celiac disease, according to a recent Mayo Clinic Study.  Encourage your siblings and your children to get tested.  Encourage your grandchildren to get tested too, especially if they have symptoms.  
 

How are you doing?  Getting a diagnosis so late in life (I was in my 50’s) can be devastating.  

Thanks for your reply.  I am still adjusting.  If you don't mind if I ramble (comes with aging - so I think I'm entitled!)  My mother had IBS, bad nerves, and a rough 20 yr long menopause.  I also read somewhere on here that someones hair turned from black to yellow - Mom's did just at the crown! I had bad nerves (that is what they called it then) and constipation all my life until the last 2 - 3 years.  I also read on here about thiamine deficiency and celiac - well I have had Parkinson's disease for 27 years and they connect thiamine def. to that too.  I take a lot of supplements and that is one of them. I began taking supplements our first child was 3 and I was trying to find some natural way to calm his hyper-ness and began giving them to him and myself.  I firmly believe that supplements and most of all God, are why I am doing so well with the PD to this day.  So, now I have an unpleasant task to convince my family! I have hinted several times but I now have to get down and serious!  

cyclinglady Grand Master
cyclinglady
Posted
(edited)

Good luck.  I have only been able to get a few of my family members tested.  Further out, I have cousins who went gluten free before my diagnosis,  they have told me that they have no desire to go back on gluten for over 6 weeks in order to get the blood test.  Who can blame them?  At least we gather and have gluten free holiday meals together!  I my husband also went gluten free 12 years before my diagnosis per the advice of two medical doctors.  The diet worked.  But like my cousins, he can not imagine going back on gluten.  He does admit that I get way more support from family, friends and medical.  
 

My daughter has been tested twice so far, but the tests were negative.  It is doubtful that she will dodge the autoimmune ball.  Our families are riddled with autoimmune. But better to know in advance.  I think lifestyle choices can greatly help.  

Edited by cyclinglady

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      My Adult daughter is blaming me for her "possible" Celiac disease.

      By cristiana · Posted

      Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this.   I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them.  Sometimes people just need a safe place to vent, and unfortunately having a go at one's parents is the all too easy option.  If she is anything like me, she will regret what she says one day.  (Oh... if only I had the chance rewind the clock!) I just wanted to add one more thing to Trent's and Scott's excellent posts regarding diet:  I have to say, not ONE person  (my nutritionist, my gastroenterologist or GP) has EVER suggested that a poor diet was the cause of my coeliac disease.    In all the various clinics I have attended these past nearly 12 years no-one has ever asked if I was brought up on processed food, or questioned if I eat 5 fruit and veg a day.  Sure, unfortunately I am only too well aware that I could do a lot better with my diet and it's a constant challenge for me not to give into what I like (unfortunately I've always had a sweet tooth).   But I know some super healthy 10 fruit and veg a day types who still got coeliac disease, and equally, a lot of people who eat all the wrong stuff and they still have cast iron stomachs. Do encourage her to get checked though - it may be that she hasn't got coeliac disease at all. Come back to us if you need any more support through the process. Cristiana
    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By trents · Posted

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    • Scott Adams
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Scott Adams · Posted

      It sounds like you’re carrying a lot of guilt, but please know that you didn’t cause your daughter’s potential celiac disease or your son’s Crohn’s. These conditions have strong genetic components, and while diet can influence symptoms, it does not cause autoimmune diseases. You did the best you could with the knowledge you had at the time, and no parent is perfect. Your daughter’s frustration is understandable, but it’s likely coming from a place of fear and uncertainty rather than true blame. Let her get tested, and if she does have celiac disease, you can support her moving forward. Instead of focusing on guilt, try shifting the conversation toward healing and learning together. You’re not alone, and you don’t deserve to carry this weight on your own. This article might be helpful. She needs to be screened for celiac disease before she can be sure that she has it. Another approach not discussed in the article is a genetic test for celiac disease, which she could do without eating gluten.      
    • Marie70
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Marie70 · Posted

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