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Whole Family With Celiac?


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11 replies to this topic

#1 kellythomas

 
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Posted 31 December 2010 - 08:38 AM

Our 16-yr-old son was diagnosed with celiac disease in March 2010. His only symptoms were short stature and delayed puberty. Since going "mostly" gluten-free in March, he has grown over 4 inches and is now getting deeper voice and facial hair. The rest of us (mom, dad, brother, sister) all had blood testing done shortly after to check tTG and IgA -- all within normal ranges.

Since we are away from home, I have had extra time to dive into the the web and read, read, read. Wow!! I'm totally convinced that I need to insist on further testing for all of us. I have a laundry list of symptoms, not to mention a mother who had her thyroid removed (presumed cancerous, determined not) and a father who had late onset diabetes and later melanoma. My husband has had digestive issues for years, mainly having to go to the bathroom within minutes of eating a meal -- every meal. His mother had diabetes as well. Our other son has stomach cramping, migraines, general "I don't feel well" almost daily, as well as "soft" teeth. Our daughter had distended abdomen as toddler, and still does to some extent.

My question is whether it's at all feasible that every member of a family could have Celiac. As a sidenote, I believe my husband is of Irish descent, and we both have Cherokee in our lineage. Is it possible for all of us to have celiac disease?
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#2 shopgirl

 
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Posted 31 December 2010 - 09:19 AM

Celiac Disease is genetic so, yes, it's possible.

Ethnicity doesn't really play into it. Celiac can be found everywhere. It's not a disease that particularly cares about your nationality. :)

And even if you test negative, you might find that you and your family has a positive dietary response.
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"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free

#3 rosetapper23

 
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Posted 31 December 2010 - 11:14 AM

When I attend conferences throughout the U.S., I'm always surprised at the number of couples where both the husband and wife have celiac--but they didn't know it at the time they got married. At one particular conference, I learned of a study out of Italy that showed that the facial bones of people with celiac can be different because they don't "set" at the proper time but, instead, keep growing into one's 20s. Since that time, I've studied the faces of people who attend celiac conferences and have seen a strong pattern where the cheekbones, jaws, and chins are quite prominent. These bones also curve differently than most people's, and I've come to recognize people who probably have celiac just by looking at them. At the last large conference I attended, I was mistaken for other people repeatedly because, as it turned out, I strongly resembled three other women in attendance. All the people in my family who have these facial features do, indeed, have celiac. Since these features are viewed by most people as attractive and because men and women tend to be attracted to people whose faces mirror their own, it's no wonder that so many men and women with celiac are attracted to each other....and sometimes marry.

So, the answer to your question is, yes, it is quite possible that your husband and you BOTH have celiac. Meal preparation should become much easier for your family, since you'll all be on the same diet.
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#4 ravenwoodglass

 
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Posted 31 December 2010 - 01:00 PM

Yes it is quite possible. It is also possible to have false negatives on both blood and biopsy so when you are done with all testing do give the diet a good strict try for the whole family.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 hazelbrown10

 
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Posted 31 December 2010 - 02:57 PM

rosetapper, do you know where I could read that paper you were talking about?
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#6 beebs

 
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Posted 31 December 2010 - 03:03 PM

I have a friend that has 4 children. Three are confirmed celiac one is the identical twin of one of the confirmed kids, so she has a high chance of being celiac (I think its 70% chance)

That paper about facial features sounds fascinating! Any chance of the link?
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HLA DQ8, gluten-free since January 2011

#7 kellythomas

 
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Posted 31 December 2010 - 03:17 PM

Celiac Disease is genetic so, yes, it's possible.

Ethnicity doesn't really play into it. Celiac can be found everywhere. It's not a disease that particularly cares about your nationality. :)

And even if you test negative, you might find that you and your family has a positive dietary response.



I totally agree that this condition doesn't play favorites! I'm totally amazed and intrigued by all the stories and how varied they are! My mom has done some extensive research on the Cherokee, and found that they have a high incidence of wheat intolerance. I know how important it is to devulge as much info as possible to docs when trying to get to the bottom of a mystery illness, and thought it may or may not be pertinent. I love all the responses -- thank you!!
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#8 Roda

 
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Posted 31 December 2010 - 08:47 PM

In my immediate family, my youngest son(6) and myself are celiac. Husband won't get tested despite some family history of possible risk factors. He figures my youngest son just got it from me so he couldn't possibly have it. Both my children were screened after I was diagnosed and both were negative and did not exibit any symptoms. Youngest was having varing symtoms so started back with the allergist and was retested for celiac in Nov. and was positive. Oldest son was also rescreened and is negative. So hubby and oldest son(almost 10) are not gluten free. I think my father may have it as well as my brother. Dad got screened a few yrs ago but I think he had a false negative (actually he don't know what his results were just that the dr. said you don't have it) and my brother refuses to get tested because I think deep down he knows he has it and is in denial. I also have two third cousins that have celiac and and uncle who I'm suspicious of.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#9 rosetapper23

 
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Posted 01 January 2011 - 02:23 AM

Unfortunately, the study was sent to me as a PDF after the conference, not a link, but it was entitled, "Large Forehead: A Novel Sign of Undiagnosed Coeliac Disease" and the paper was written by Finizio, Quaremba, Mazzaccca, and Ciacci. Interestingly, the Italian study showed that Italians with celiac tend to have larger, wider foreheads. The celiacs that I observed in the United States had large jaws, cheekbones, and chins.
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#10 beebs

 
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Posted 01 January 2011 - 02:48 AM

Unfortunately, the study was sent to me as a PDF after the conference, not a link, but it was entitled, "Large Forehead: A Novel Sign of Undiagnosed Coeliac Disease" and the paper was written by Finizio, Quaremba, Mazzaccca, and Ciacci. Interestingly, the Italian study showed that Italians with celiac tend to have larger, wider foreheads. The celiacs that I observed in the United States had large jaws, cheekbones, and chins.


thanks!! Here it is? Not sure if we are allowed to post links? Sorry if we aren't

http://www.labmeetin...coeliac-disease
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#11 rosetapper23

 
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Posted 01 January 2011 - 01:25 PM

Yes, that is the story! Thanks for posting it! Unfortunately, it doesn't seem to include the photographs of the patients that show the points of the face that were used and how the differences appeared, but if you contact me, I'll send you the PDF.

At the conferences, I've taken numerous photos of people who represent the type of face I see over and over again among celiacs. Some are almost caricatures--specific facial features are so emphasized. At one conference, I was certain that a young lady and a young man were brother and sister because their facial features were so unique (exaggerated curving of the cheekbones, jawbones, and chins), but they weren't related at all! If you look at the photos of posters on this forum, you'll see these unique characteristics in a number of them--look for square (but curved) jaws, prominent cheekbones, and chins that are pronounced and slightly curved forward. I call this look "crescent face" because in 3/4 view, they resemble the cartoon image of a 3/4 moon face that is smiling--the foreheads are flat, the nose area also appears a bit flatter than normal because the cheekbones are so pronounced, and then the large curved jaws and chins are quite noticeable. Luckily, these features are considered desirable in our culture--I strongly suspect that a number of actors have celiac, since their prominent features make them attractive to audiences. If you think about it, a number of famous people who have celiac are considered quite good looking.

At the last celiac conference I attended, I noticed that even the African-American celiac attendees had the very same exaggerated facial characteristics I've described above. I mentioned my hypothesis to a number of people I know (we are members of the same nationwide celiac organization), and they began to observe people's facial characteristics, too. They were amazed at the similarities in most people's faces and discussed this issue with much excitement throughout the conference.

Besides being repeatedly mistaken for other people at these conferences, I've also had the experience of believing that I've met certain people before because they looked "familiar." Likewise, numerous people would approach me and say that they're certain they've met me before when there was actually no chance of that happening. I think that our similar features make us appear familiar. At regular, non-celiac events when I've spotted someone with what I consider to be celiac facial features, it is uncanny how many times that person will rush up to me--a total stranger--and exclaim that he/she knows me from somewhere. They always insist that they've met me before....when probably I just seem familiar because I may resemble some of their celiac relatives or friends with celiac--or even them. Lastly, it is interesting how attractive I find men with celiac--they're just a good-looking lot (now don't let this go to your heads!). Again, I believe this is because of the "mirroring" aspects of our faces. So...if you've had that love-at-first-sight experience and the person turned out to have celiac, there's a possible explanation for it.

By the way, I can't figure out how to post my photo on this site--I think the size of my photos is too large (??). Anyway, if I could figure out how to do it, I could post my photo and those of my grown children, and you would easily see what I mean by "crescent face."
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#12 ravenwoodglass

 
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Posted 01 January 2011 - 01:33 PM

Yes, that is the story! Thanks for posting it! Unfortunately, it doesn't seem to include the photographs of the patients that show the points of the face that were used and how the differences appeared, but if you contact me, I'll send you the PDF.

At the conferences, I've taken numerous photos of people who represent the type of face I see over and over again among celiacs. Some are almost caricatures--specific facial features are so emphasized. At one conference, I was certain that a young lady and a young man were brother and sister because their facial features were so unique (exaggerated curving of the cheekbones, jawbones, and chins), but they weren't related at all! If you look at the photos of posters on this forum, you'll see these unique characteristics in a number of them--look for square (but curved) jaws, prominent cheekbones, and chins that are pronounced and slightly curved forward. I call this look "crescent face" because in 3/4 view, they resemble the cartoon image of a 3/4 moon face that is smiling--the foreheads are flat, the nose area also appears a bit flatter than normal because the cheekbones are so pronounced, and then the large curved jaws and chins are quite noticeable. Luckily, these features are considered desirable in our culture--I strongly suspect that a number of actors have celiac, since their prominent features make them attractive to audiences. If you think about it, a number of famous people who have celiac are considered quite good looking.

At the last celiac conference I attended, I noticed that even the African-American celiac attendees had the very same exaggerated facial characteristics I've described above. I mentioned my hypothesis to a number of people I know (we are members of the same nationwide celiac organization), and they began to observe people's facial characteristics, too. They were amazed at the similarities in most people's faces and discussed this issue with much excitement throughout the conference.

Besides being repeatedly mistaken for other people at these conferences, I've also had the experience of believing that I've met certain people before because they looked "familiar." Likewise, numerous people would approach me and say that they're certain they've met me before when there was actually no chance of that happening. I think that our similar features make us appear familiar. At regular, non-celiac events when I've spotted someone with what I consider to be celiac facial features, it is uncanny how many times that person will rush up to me--a total stranger--and exclaim that he/she knows me from somewhere. They always insist that they've met me before....when probably I just seem familiar because I may resemble some of their celiac relatives or friends with celiac--or even them. Lastly, it is interesting how attractive I find men with celiac--they're just a good-looking lot (now don't let this go to your heads!). Again, I believe this is because of the "mirroring" aspects of our faces. So...if you've had that love-at-first-sight experience and the person turned out to have celiac, there's a possible explanation for it.

By the way, I can't figure out how to post my photo on this site--I think the size of my photos is too large (??). Anyway, if I could figure out how to do it, I could post my photo and those of my grown children, and you would easily see what I mean by "crescent face."


That's really interesting. One thing I have noticed in myself and my children is that on gluten many times one eye will appear smaller than the other. When not under the gluten influence both eyes are the same size. I have noticed this in others also who are thinking they might need the diet because of symptoms. I wonder if that might be another characteristic.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




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