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Anyone Celiac And No One Else?


Donna F

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Donna F Enthusiast

Hey, I just thought of something...

Is anyone else here a Celiac with NO ONE else in their family ever having been???

We are looking back on both sides of the family and NEVER any digestive problems or cancers of ANY kind on either side. Wierd!

Isn't Celiac genetic/hereditary??? How do you get it otherwise?

donna


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Thomas Apprentice

i wonder

sunshine264 Newbie

Same here Donna. However, from what I have read, Celiac Disease RECOGNITION is on the rise. Its possible that people in your family have had some of the symptoms, but never sought help from it.

Also the incidence is 1/20 for brother/sister/parents, but 1/40 for aunt/uncle/grandparent. Because of this, you may be the only one (like me) who "got lucky"!

Eileen

tarnalberry Community Regular

No one else in my family is aware of having celiac. Since there are SO MANY silent celiacs, it could be that someone has it, but doesn't know it, or that it's a recent "addition" to your family's genetic makeup.

Guest Evelyn&Ric

My husband Ric who is half Greek, and became gluten intolerant in his 50s. No one in is family that we know of has Celiac. We think it may have been triggered by over use of antibiotics. He was seeing a dermatologist for many years who kept switching his meds. After getting no results from doctors, I found this web site and he tried a gluten-free diet with great results. This acne also cleared up! Thank you Celiac.com and all it's supportive members.

Evelyn

flagbabyds Collaborator

My 19 year old sister just started the diet and she says she never knew how sick she felt uuntil after starting the diet and feeeling SO much better. You could always have people in your family tested or just have them start the diet and see what happens if you are really curious.

celiac3270 Collaborator

My parents and brother have been tested -- and don't have it. Nobody in my family is known to have it or has symptoms like it except for me. However, my grandmother on my mother's side...who came from Switzerland has osteoporosis (a long-term symptom) and has always been REALLY thin...thinner than I ever was. I think she has it, but don't know for sure. Anyway, it's not worth getting tested when you're already 80 years old...you can't turn around osteoporosis, scoliosis, thinness, and all the other things once they've progressed so far....techinically nobody in my family has it, but both grandparents on my mother's side are European (Swiss and Swedish), so it makes sense I would have it. I personally believe that my grandmother has it, but based upon solid testing, nobody in my family has it.

No one else in my family is aware of having celiac. Since there are SO MANY silent celiacs, it could be that someone has it, but doesn't know it, or that it's a recent "addition" to your family's genetic makeup.

I concur with Tarnalberry...my parents don't have it, my brother doesn't have it, and the only one who possibly has celiac disease in my family is my grandmother. Perhaps an older relative had SILENT celiac disease...after all, back in the day they didn't test for it...or even know about it (did they?).

-celiac3270


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    • cristiana
      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 and that is 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
      Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject: Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet. Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?"  When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.
    • Scott Adams
      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
      Hello, My mid twenties daughter is blaming my husband and I for her celiac disease.  She has not been diagnosed at all, but GOOGLE has informed her she has it.  She is going to go get tested now, but my question is, did we?  I was not the best cook while she was growing up and often made quick processed food for meals.  She is blaming us for what she ate growing up and is angry that we didn't feed her better.  I don't know how to react and all I could tell her was I was sorry.  Her older brother has Crohn's disease and he was diagnosed as a teenager.  She is also furious with us that we didn't change his diet either.  I don't know why I didn't and I am having so much guilt I don't even know how to handle this situation.  Both sides of our family have a history of IBS, Celiac and Crohn's disease.   I guess I just wanted to hear from anyone out there that can either point blame at me (I can accept it) or tell me that the food she ate growing up didn't have an affect on her.  I am thinking it most likely did. Thank you, Marie
    • RMJ
      I’d say celiac is likely.  Please continue to eat plenty of gluten until your endoscopy to be sure that any gluten-related damage can be seen.  Plus it gives you one last chance to enjoy your favorite gluten-containing foods. I hope the endoscopy/biopsies give you a definitive answer. 
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