Family Members With Celiac?

[foodiegurl]

I am just curious as to how many of you have immediate family members with celiac?

And on the flip-side, how many of you have family members who refuse to get tested for it?

I have one sister who was diagnosed with a wheat allergy, before I was diagnosed with celiac, and even though she refuses to believe she also has celiac (and has lived on omeprazole daily for 2 years).....it wouldn't make sense for her to put in her diet to get tested, but she may be getting it from oats, rye, barley.

I have another sister who hates when I say the word 'gluten' and claims she doesn't have it, and it doesn't even make sense for her to get tested

My mom tested negative, and I am still waiting on my dad to do it. Of course he went to get tested and his dr brushed it off saying he didn't need to get tested. So frustrating. My dad actually has always had tummy issues and had his gallbladder taken out a few years ago, and I have a feeling that is where I got my genes from.

[psawyer]

My father was told he had irritable bowel more than forty years ago. TMI: when I still lived at home, I saw what he could do in the bathroom. I am not the only family member to have had explosive diarrhea.

When I was diagosed, I suggested to him that he be tested, but he blew me off. He told me that when his colon was upset, wheat seemed to calm it. He's 85, so I'm not pushing it.

But you can only lead the horse to water. The decision is theirs, and you just have to accept that they will make up their own mind, whether you agree with their decision or not.

[ptkds]

I have 3 daughters that have it. Luckily, they are young and I control their diets! My mom has celiac, and we suspect her 2 sisters of having it. However, they refuse to get tested because they feel that they couldn't do the diet anyway so there is no point. It is frustrating, but you have to remember that you can't control thier lives. Just agree to disagree!

Good luck!

ptkds

[Roda]

I think the genes come from my paternal grandmothers side of the family. My father's first cousin's daughter and my uncle's great grandson has celiac. My uncle I suspect may suffer because he has bad psorasis all his life. Both my parents tested and were negative. However, I still suspect that my dad may have had false negative tests. He had emergency surgery when I was a child for incarcerated bowel and has had very bad heartburn as long as I can remember. He has been taking protonics for every bit of 6+ years. He has been told his vitamin D, phosphorus and now platelets are low, but I don't know if the last two could be related to celiac. He also just saw a neurologist for tingling in his legs and feet and was told it was related to vitamin b12 being low.?? I have an older brother who refuses to get tested who has lactose intolerance and gi issues plus has sarcoidosis (autoimmune). He also has a rash on various parts of his body that won't go away. He said he would rather die than give up the foods he loves. It's like talking to a brick wall so I just don't. My father and brother both have very low cholesterol and triglicerides despite both being overweight. Before I was diagnosed celiac I had a lipid panel done and my test were all low, below low normal. My triglicerides were only 4. I had one doctor tell me that she had never seen a level that low. Upon research I found out that abnormally low triglicerides were a sign of malabsorption. These tests were probably 6 years ago. I just had them repeated last month and all have normalized.

[tmbarke]

At first I thought I was the only one - then I reconnected with some relatives to find they have thyroid problems like me and one even developed into cancer and had it removed and is totally gluten-free. Her father (my brother) has the thyroid problem, prostate to bone cancer and is diabetic....his other daughter has the thyroid issues too. (Mine is like Hashimotos but not tested - just know I had to go gluten-free and problems are gone).

I have a niece with Lupus and has been tested as negative but has something secondary causing autoimmune issues.

I've 'enlightened' them to this forum and even sent them links of the topics I find that will benefit them.

They are listening.

[luvs2eat]

I was the ONLY one in my family and extended family to be diagnosed about 9-10 years ago. Only one of my kids would consider being tested and the bloodwork was inconclusive. The others said, "WHY would I want to know if I'm not having symptoms??"

Middle daughter (the one who was tested) was formally diagnosed a few years later and youngest daughter was diagnosed last fall... and is having a TERRIBLE time. She's got other health stuff going on and doesn't eat things w/ high levels of oxilates. She's still on a quest to figure out exactly WHAT she can eat w/o feeling bad.

Oldest daughter hasn't been tested, but has just gone thru 6 months of chemo for breast cancer. Her doctor told her to watch out for celiac as the trauma of cancer and chemo may just act as a trigger. She certainly knows the symptoms!! But she's enjoying gluten for as long as she can!!

My brother's not been tested but my sister, who has many, many food intolerances was. She had to demand the test (she's in France) because her docs told her it was so rare. Bloodwork was negative... so she's happily eating the best bread in the world.

[Shannonlass]

As far as I know, neither my parents nor any of my 5 siblings (aged 21-28) have gone for testing. I am pretty sure it comes from my dad's side of the family. He doesn't have any bowel issues. His mother has always struggled with her stomach (She's 93 so I wouldn't be suggesting she get tested!!!) My great-grandmother was the same and from talking to my nan she was a classic celiac. Could never put on any weight and always suffered with digestive issues.

My siblings are afraid of finding out they have it because they are sure they couldn't do the diet. I didn't start having any really bad symptoms until I was 25 so the youngest 3 could still get sick and I've a feeling they would have a different perspective on the diet after a few years with diarrhea and vomiting

[MagpieWrites]

Let's see...

I thought at first I was the only one.

But no - my grandmother (mom's mom) found out right before she passed from stomach cancer. Ditto my aunt (dad's sis - so Hey! Both sides of the family. Genetically screwed, table for one? ).

Two cousins were diagnosed early - both of them have parents who decided the gluten-free diet was too hard to manage and ignored it until now (one is 38, and only really found out he had been diagnosed as a child. He's a wee bit... pissy with his mom to discover there has been a solid reason for how sick he's been all his life). One is starting to deal with going gluten-free, the other is in the "Hasn't killed me yet, it's too much work" camp. My SIL and my 5 year old nephew are both allergic to wheat (as well as a host of other things) but aren't sure about celiac, at least for the little guy. They figure when he (nephew) is older, they will see about getting a scope done, but right now knowing about the allergy side is enough for them to stay gluten-free.

Three more cousins are going in for testing, aunts on each side of the family have been confirmed. My dad is a likely case.... but the hotspot is gonna freeze over before he gets tested!

[T.H.]

OH, regarding your middle daughter! Has she checked out fructose malabsorption? It involves veggies, grains, and fruits that cause gut issues, and it's not inherited, but seems to be caused. They don't know everything about how it gets started, but there does seem to be a correlation between it and people who have had gut problems, like IBS and celiac disease. Might be worth checking out.

There's a bit about it, here, listing foods that seems to be okay, in case it helps: Open Original Shared Link

I was the ONLY one in my family and extended family to be diagnosed about 9-10 years ago. Only one of my kids would consider being tested and the bloodwork was inconclusive. The others said, "WHY would I want to know if I'm not having symptoms??"

Middle daughter (the one who was tested) was formally diagnosed a few years later and youngest daughter was diagnosed last fall... and is having a TERRIBLE time. She's got other health stuff going on and doesn't eat things w/ high levels of oxilates. She's still on a quest to figure out exactly WHAT she can eat w/o feeling bad.

Oldest daughter hasn't been tested, but has just gone thru 6 months of chemo for breast cancer. Her doctor told her to watch out for celiac as the trauma of cancer and chemo may just act as a trigger. She certainly knows the symptoms!! But she's enjoying gluten for as long as she can!!

My brother's not been tested but my sister, who has many, many food intolerances was. She had to demand the test (she's in France) because her docs told her it was so rare. Bloodwork was negative... so she's happily eating the best bread in the world.

[T.H.]

If it helps in talking to your family: the current recommendation, based on current research, is that ALL members of your family that are within 1 degree of separation from the celiac person should be tested for celiac disease(parents, siblings, children). This is because the newest research is showing that if you take a population who are 1 degree separated from a person with celiac disease? About 1 in 22 people have it. 2 degrees of separation (aunts, cousins, etc...) - about 1 in 56 have it. This info, however, is only about 5 years old, so if a doctor isn't keeping up on the disease, he probably isn't aware of how common it is.

Old estimates were that celiac disease affected 1 in every couple thousand people, and that it ONLY presents with gut symptoms like the runs, weight loss, etc.... New research shows that it's now affecting 1 in every 133 people, and 'silent celiac disease,' with no gut symptoms at all, is becoming much more common. The medical textbooks that are used to teach doctors were only changed to reflect this information, again, about 5 years ago.

Unless your dad is going to a doctor who just got out of medical school, the doc is probably going by the old statistics and knowledge, and needs some new info. If he's willing to give it another go, I'd arm him with some information and have him go request the test again.

And for your other sister, who doesn't want to know, or is so sure she doesn't have it? Silent celiac disease has no symptoms that really show as 'celiac disease,' but here are some vaguer symptoms that CAN show up (in case they reflect her) - weight loss, or weight gain, gets sick more easily than most, recovers slowly from illness, has joint or soft tissue issues, gets soft tissue injuries more easily, has teeth problems, has depression or problems with temper control or sleep problems.

These are all because of vitamin deficiencies and/or being immuno-compromised all the time (the temper control? If she can't digest tryptophan, she can't make much seratonin, and so can't control her moods).

Another few things to consider:

1 - it's like diabetes in that it's an auto-immune disease and so it is destroying part of your body. Diabetics stop being able to produce insulin, celiac disease folk stop being able to digest food. But while we usually hear about how we just 'go gluten free' and that takes care of it, this isn't the case. Only about 20% of adult diagnosed celiacs regain full functionality of their gut. Most of them will need vitamin supplementation for the rest of their life. Sadly, many doctors don't test their patients to see how their vitamin levels on for any length of time.

2 - The damage - while the disease is active - leaves us more open to cancers and other issues that destroy our organs from vitamin deficiencies and inflammation. And we don't find out until it's too late to do anything about it. Yeah, your sister doesn't have symptoms now. Great. That means that now is the perfect time to test, so that she can catch it before damage is done, if she DOES have it.

And...my family members with celiac disease? My father was diagnosed by accident, when he presented with an ulcer that they thought was from cancer. None of us were ever tested. 7 years later, I got diagnosed, because I was having a host of other health issues and during a biopsy I figured, 'eh, why don't I see if they'll test me, just because they'll be in the gut anyway.' None of the doctors thought I had the disease, because I had no gut symptoms at all. After researching, I decided to pester the family to test. My daughter came back positive - no symptoms but feeling a little tired all the time. My brother came back positive - I understand he'd just started noticing feeling a little queasy periodically. But he had severe damage and four ulcers that were starting up because of this.

Definitely a good possible for your other family members. I wish you good luck, and hope you can help educate your father's doctor so he knows of what he speaks. :-P

I am just curious as to how many of you have immediate family members with celiac?

And on the flip-side, how many of you have family members who refuse to get tested for it?

I have one sister who was diagnosed with a wheat allergy, before I was diagnosed with celiac, and even though she refuses to believe she also has celiac (and has lived on omeprazole daily for 2 years).....it wouldn't make sense for her to put in her diet to get tested, but she may be getting it from oats, rye, barley.

I have another sister who hates when I say the word 'gluten' and claims she doesn't have it, and it doesn't even make sense for her to get tested

My mom tested negative, and I am still waiting on my dad to do it. Of course he went to get tested and his dr brushed it off saying he didn't need to get tested. So frustrating. My dad actually has always had tummy issues and had his gallbladder taken out a few years ago, and I have a feeling that is where I got my genes from.

[sa1937]

I'm convinced my Mom had it (undiagnosed) but her problems were very different than mine. She was so constipated (had her to ER on more than one occasion) and very bloated. She was a tiny woman and weighed 90 lbs. dripping wet and could not gain an ounce regardless of how she tried. She actually looked 6 months pregnant. She died in 1997 and prior to going into a nursing home in 1994, she had been seeing a GI doc, who never suggested testing her for celiac, although I don't know what kind or how good the tests were in the early 1990's. Her brothers and sisters were so much older than and I just don't know what health problems they may have experienced. They are all deceased and I don't know if my cousins have problems or not as I just don't see them.

While I've never had gene testing done, I was diagnosed through the celiac panel of blood tests followed up with an EGD/biopsy on April 9 (both positive).

On the other hand, my daughter has symptoms such as I did...the Big D. She is one of the reasons I wanted a definitive diagnosis. She saw a naturopath when they lived in Portland, Maine before moving back to Denver in 2004 and was tested with a saliva test. She is also hypo-thyroid. She is basically eating gluten free now and is in grad school (finals this week) so when school is over, she wants to be tested. It will be difficult as she's taking a Maymester class starting next week and then another class following that so she can carry a lighter load in the fall as it's really difficult with such an intense schedule having a daughter who's 12 going on 16. If I had a farm, I'd bet it on her having celiac disease, too.

This has been a very interesting topic. Thanks for posting it!

[weluvgators]

I have a husband, a father, a mother, a brother and an aunt that have all TRIED to get tested. My husband MAY have gotten the correct test on his THIRD attempt (and only because he had been really sick for months at that point). We haven't gotten those test results back . . . so I have no idea if they finally ran the right ones or not. My brother's doctor convinced him that it wasn't worth the time, energy and effort and that testing would cost thousands of dollars and may jeopardize his future health insurance. My father and mother had tests run, but the tests were not the panel currently recommended - the results I saw were a ttg IgA Antibody, but not a total IgA . . . and their doctor came back and told them that they are "negative for celiac" (and my mom has some pretty serious, yet idiopathic, issues going on and pretty dramatic trace gluten reactions . . . but she is morbidly obese . . . so doesn't "fit the picture"). My aunt had the same experience . . . doctor tried to *guess* what tests should be ordered since she requested testing (she has had a lifelong struggle with autoimmune issues - shouldn't she have been tested decades ago . . . lots of fertility issues too). Anyway, he ordered some strange round of testing that I couldn't make any sense of and then declared that she was "negative for celiac".

So, in working with our pediatric gastroenterologist for our kids . . . she asked me if any of my family members had been tested and diagnosed. I burst into tears as I tried to explain to her that they have TRIED!

But in our family, we went to a gluten free house when our second child was very young, as she has never been able to tolerate gluten directly. The gluten that she got from my breastmilk over her first year of life and our ignorance of cross contamination resulted in permanent damage to our child. NONE of the doctors and dentists that we worked with ever indicated that we needed to better understand what we were dealing with. I naively thought when she was a baby that we would just go gluten free and never have to learn about celiac (she couldn't pass the first step needed to gain a "celiac" diagnosis since she could not eat gluten). Well, we have since had to learn a lot about celiac, and we continue to try and understand what we are dealing with. Fortunately, we were able to come to our gluten understanding while we were all still healthy, and that has been a tremendous blessing in navigating our gluten free lifestyle. Myself and all three of our children are very sensitive to gluten. The youngest two have never been able to consume any amount of gluten, and the oldest now presents with some fairly dramatic responses to incidental gluten exposure. Both maternal and paternal grandmothers have adopted restricted gluten diets because they feel much better. Of course, they both adopted gluten free diets and THEN got tested.