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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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      By Jacki Espo · Posted

      I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash.  Good luck. Wishing you the best. 
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      Reply to Jackie, Thank you. I have not been eating any oats at all, but I am aware of a possible correlation. And I already rarely eat out, and not recently. So, whatever this is, I’m doing it to myself, somehow. 🤷‍♀️
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      Reply to Trent’s, Hi. Thanks for the welcome but I would truly rather to not have to be here. I’ve been researching everything I can about this dermatitis herpetiformis. I did read about Iodine, but to be honest I didn’t think it could be me. Maybe wishful thinking would be more likely. I already have so many eating issues from long term effects of radiation, that going gluten free is hard enough. Add to that low iodine and I may just as well not eat at all.  I’ve never been a big meat eater. I eat it, as well as poultry, pork, etc., but small portions. I have not been able to eat most fruits due to the burning and stinging of my mouth, tongue and throat, and the sour taste. Same with condiments containing vinegar. Mayonnaise I can handle. Mustard, ketchup, salad dressings, pickles all burn like the dickens, as does fruit, esp citrus. I dip the tines of my fork into a mild dressing when eating salads. I am able to eat a banana as long as I drink water right away, with it still in my mouth. Strawberries taste like I poured salt on them.  Fruit juices are a no go as well. And I use gravies and non-spicy sauces to moisten everything I eat. That leaves me with vegs, dairy and carbs. I’ve recently gone gluten free. But dairy! I love. It’s cooling and soothing to my burning mouth. Milk, cheese, ice cream, eggs…all big in iodine.  I am unable to swallow any pills whole any longer, so I have to crush or chew them and I have been mixing them in yogurt of late. I like most vegs, but I use butter on them. I don’t add table salt on anything, iodized or not. Carbs are pretty much self explanatory; soft, easy chew, easy to swallow. I’ve purchased gluten free versions, but have not even tried them yet. No desserts because of gluten. I like and would use peanut butter, though not frequently.  I only am able to drink water. No coffee or tea because caffeine now keeps me awake. Tea leaves a squeaky dryness in my mouth, (as do apples). I can’t drink any carbonated drinks because the bubbles burn and sting my mouth and throat. Same thing goes with alcohol. No beer, wine or hard liquor of any kind. I have requested a serum iodine level to be ordered. I have a vitamin B12 level already ordered, and I am awaiting results of my skin biopsy. If this turns out to be iodine related, I don’t know what I’m going to do. Gluten free is bad enough - but it’s managable. Low iodine is another story altogether. I’m terrified. But I thank you for mentioning it and bringing it to the forefront of my mind from the back of it. 
    • cristiana
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