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How Many Family Members Have Celiac?


shezatrip

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shezatrip Apprentice

I would like to know how many in your family or extended family have Celiac?


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gary'sgirl Explorer

I would like to know how many in your family or extended family have Celiac?

I just left a message in your other thread, but incase you don't see it:

All three of my children have Celiac. Both my parents and I along with one of my three sisters also have Celiac.

ravenwoodglass Mentor

All of them.

India Contributor

No-one in my immediate family seems to have coeliac disease but my dad found out recently that two relatives on his side of the family do have it. He was tested rather reluctantly, so I hope now he realises I wasn't just being over-dramatic!

Roda Rising Star

My youngest son (6yrs) and I have celiac. I have two third cousins on my dad's side who are confirmed celiac. I am suspicious of my father, brother and my dad's brother.

MelindaLee Contributor

I am the only confirmed, however my son has been gluten-free for the last 2-3 years and won't go back. My sister is in the process of being tested but has noticed when she avoids gluten she feels better. I fear she will get a false negative because she has avoided so much for so long. I am certain my mother is probably as well, but she is in denial, though supportive of me.

ElseB Contributor

Just me. My sister has Crohn's Disease and refuses to get tested for Celiac. My parents were both tested after I was diagnosed but were negative. My dad likes to think that because he tested negative that it couldn't possibly have come from his side of the family. But the thing is, we know everyone on my mom's side and none of them have it. But my dad doesn't know any of his extended family so its possible one or some of them are celiac!


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Emilushka Contributor

I'm the only one. My sister has been diagnosed IBS but doesn't think she has Celiac and doesn't want to get blood testing done while she's still eating gluten or go gluten-free. She's happy and quite healthy, so for now I'm not arguing.

cassP Contributor

OY- most of them will not get tested :angry::angry::angry:

i have 2 DQ8s- one from both mom and dad. i 100% believe my Dad has it- and he wont get tested :(((((( he's had psoriasis for YEARS & anxiety. both his parents ended up with dementia- and i dont want my dad to :(

Mom's got Hashimoto's and is at least Gluten Sensitive.

Sister is gluten free, and brothers are wheat free.

my aunt's docs dx her with "Crohns" & "Colitis" but never tested her for Celiac- and i asked her to, but she doesnt get it. My cousin has wheat & dairy allergies & gets seizures from aspartame- her doc wants to test her for Celiac but i told her the tests will be innaccurate if she's not eating gluten.

my Dad's Aunt died from stomach cancer. and my mom's side of the fam has thyroid issues and early heart disease.

this is why im so upset with our medical system

SaraKat Contributor

Just me so far. My Dad was tested and negative and my mom and sister are going to get tested. They don't have any symptoms/other health issues though so unless it is silent celiac I am sure they are negative.

cap6 Enthusiast

Just me. I believe my mom had it as she had all of the symptoms

diarrhea/constipation

bloating

tummy pain

fibromyalgia

diabetes

what we now believe was dermatitis herpetiformis

IBS

easy bruising

canker sores

restless leg

Untreated, her body failed when she was only 77. My sorrow is now that I wasn't diagnosed sooner that maybe it might have helped her.

cassP Contributor

Just me. I believe my mom had it as she had all of the symptoms

diarrhea/constipation

bloating

tummy pain

fibromyalgia

diabetes

what we now believe was dermatitis herpetiformis

IBS

easy bruising

canker sores

restless leg

Untreated, her body failed when she was only 77. My sorrow is now that I wasn't diagnosed sooner that maybe it might have helped her.

im sorry and share your frustration

Googles Community Regular

I'm the only one who has been tested. Though I have told the others they should be. My brother and maternal uncle have crhones (sp). And there are other digestive problems in my father's family. I think my mom might have it. I can't force them to get tested as it is their own health.

polarbearscooby Explorer

Me and a 3rd cousin so far, I'm sure my Grandma has it, and my sister probably does...Who knows how many others...

precious831 Contributor

My daughter and I have it, we seem to be both having issue with all grains so we're actually grain-free. My mother has GI symptoms too, possibly the same thing but she doesn't want to skip gluten/grains.

rosetapper23 Explorer

My mother and her brother, my sister's daughter, and both of my kids have it. We also suspect that my brother's kids have it.

tennisman Contributor

Me and my Mum both have celiac disease in our family

lovegrov Collaborator

My father and me.

diane64 Apprentice

Just me so far. My parents were tested and are negative, but my dad sure does have a lot of the symptoms. My sister was just diagnosed with fibromyalgia, but tested negative for celiac. My brothers have not been tested yet. My one brother told me that he has enough problems- like being tested makes you sick? My son was adopted, so he doesn't seem to have it- at least not from me!

mushroom Proficient

Both parents dead, but either one a likely suspect. Brother dead - think he had it. Oldest sister and I are non-tested and gluten free, middle sister "just gets on with it" but always asks if I have enough toilet paper when she comes to stay :rolleyes: , oldest sister's daughter is diagnosed celiac.

WW340 Rookie

Almost my entire family and extended family are gene + or double gene positive. Of those, 4 have been antibody positive, including myself and my son. Two other family members are having their biopsies this month. Two others were biopsy negative. We have only had one great nephew that was totally negative.

My Mother and her brother both died of intestinal lymphoma, so it is taken very seriously in my family. Those that are gene positive, but antibody and biopsy negative have still been advised to be gluten restricted anyway due to the family history.

sa1937 Community Regular

Both my daughter and I have it. I suspect my mother also had it but died undiagnosed at a ripe old age in 1997. My son is adopted so I guess he has his own set of genes to deal with.

GlutenFreeManna Rising Star

I suspect my parents, brother and grandmother all have it but they refuse to be tested for it. My mother and grandmother both have thyroid disease. My grandmother had stomach problems and anemia for years and just recently survived surgery for intestial cancer. My brother was diagnosed with "IBS" years ago but he got rid of it for the most part by changing his diet to low carb/mostly organic. So he probably has celiac, but would not show up positive on the test because he mostly eat whole foods and very little bread/pasta. It does make it easier to eat at his place when I visit. My dad had stomach problems and IBS all throughout my childhood and he had his gallbladder taken out to try to fix it, gallbladder surgery seemed to help a little, but he still had some eating restrictions after getting the gallbladder out. I had my gallbladder out as well and also found it releived some problems but brought on new ones. I suspect (though I can't prove) that celaic killed my dad's gallbladder as well as mine.

kitgordon Explorer

My grandmother, my mother and both her brothers, one of Mom's sisters (the other probably has it as well, but doesn't believe it), and probably at least two, if not all 3 of my adult and nearly adult children who refuse to be tested.

CarolinaKip Community Regular

I would like to know how many in your family or extended family have Celiac?

As of now, I'm the only one with Celiac. I have a sister with Lupus and Raynaud's. When I found out I had Raynaud's I thought I might have Lupus as well. When I got the DX of Celiac, she was tested, and it came back neg. She has stomach issues due to her Lupus as well. She wants me to be tested for Lupus. We have three other siblings which seem to have no signs of Celiac or Lupus, they don't want to go get tested either. My parents are both gone, however, we feel our mother had Lupus and or Celiac. My children do not want to be tested and show no signs, however, I do want them tested.

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    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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