Celiac And Gluten Intolerance Within Families

[Guest Kathy Ann]

I keep reading that within immediate families something like only 10 percent are likely to have celiac or gluten intolerance if a parent has it, for instance. At that rate, since I am celiac and have 8 children, only 1 of them statistically would have it.

Yet, as I'm reading a lot of the bios and signatures on this board, it sure looks like MOST of the children of celiacs and gluten intolerants seem to have some form of it. I'm also amazed at how many husbands and wives BOTH have gluten issues, which has nothing to do with being blood related. Just curious about your opinions and observations.

[2Boys4Me]

In our family my one son has celiac. My husband, older son, my Mom and I were tested and none of us have it. No one on my husband's side of the family has been tested, and neither my dad, brother, nor sister were tested either. Presumably if my husband or I had it, then our siblings would get tested.

[AndreaB]

Kathy Ann,

We were tested through enterolab and myself and two oldest children tested postive. My husband has 2 celiac genes though. My infant son is who led us down this trail due to his eczema outbreak around 2 months of age. He is completely clear since going gluten free. I feed him oatmeal cereal at 8 months and he was crabby the whole week so I suspect he will be intolerant also.

[celiacgirls]

It seems higher than 10% to me. I think I read on Enterolab's site that 80% of the relatives will test positive after one does.

In my family, my 2 children and I are all gluten intolerant per Enterolab. My husband only did the gene test and he has 1 celiac gene and 1 gluten intolerant gene. I have one of each also. I don't know about the kids.

My mother had the endoscopy to look for celiac and it was negative. She had been gluten free for some time before that but started eating some gluten for the test. She has had a positive dietary response so is gluten free. Her mother had biopsy-proven celiac.

One sister and her two children tested positive by Enterolab. My brother was positive. My other sister did not test herself but her two children are positive. We know one brother-in-law has either 2 celiac genes or one gluten intolerant gene and one celiac gene.

Not all of them are actually on the diet yet but it is impressive to me that they were all tested.

[hannahsue01]

Our daughters GI claims that even if I and her sister have celiacs that she would only have 3% chance of having it. I personally think that is BULL ****!!!!!!!!!! It seems Everbody so far in our family in the same blood line has the disease from there great grandmother on down the line. Grandparents.....great grandparents.....aunts......great aunts......second cousins........sisters......and there is evidence way down the line of the disease in our family. Besides our baby it seems that everyone in the blood line has it......seems a little fishy to me.

[prinsessa]

The only ones to be tested in my family are me and my kids. Both mine and my son's blood test came back negative. I decided to test the kids through Enterolab and they both came back gluten intolerant. I didn't test myself because I already know I have gluten intolerance through dietary changes. I would like my husband to be tested for intolerances because he has constant digestive problems. He says he doesn't and won't get tested. I know for sure he has digestive problems because we have lived together for years. You can't hide things like that from your spouse

My mom and brother won't get tested either even though my mom has complained of digestive problems. And she said my grandmother had chronic diarrhea.

[happygirl]

hannahsue,

Obviously there is much more at play than just genetics, otherwise why would some families have "lots" of Celiacs and others have none. And, statistics refer to a general population, not individual families.

Leading Celiac experts recommend that all first degree relatives of Celiacs are tested. In terms of the latest research, Dr Fasano's study reports that: (taken from an abstract on celiac.com)

According to a recently published large-scale multi-year and multi-center study, 1 in 133, or a total of 2,131,019 Americans have celiac disease. Alessio Fasano, MD, et. al., and colleagues screened 13,145 subjects using serum antigliadin antibodies and anti–endomysial antibodies (EMA). Those who had positive EMA results were screened again for human tissue transglutaminase IgA antibodies and celiac disease-associated human leukocyte antigen DQ2/DQ8 haplotypes, and when possible, intestinal biopsies were also given. Additionally, for those with biopsy-proven celiac disease, 4,508 first-degree relatives and 1,275 second-degree relatives were also screened for the disease. A total of 3,236 symptomatic patients and 4,126 not-at-risk individuals were screened.

The study determined the following:

Group Prevalence

First degree relatives 1 in 22

Second-degree relatives 1 in 39

Symptomatic patients 1 in 56

Not-at-risk individuals (overall prevalence) 1 in 133

These results are much higher than previous studies have found, and they indicate that celiac disease is perhaps the most common genetic disorder in the United States, as well as one of the most poorly diagnosed diseases.

(end of abstract)

However, this study does not take into account "mere" gluten intolerance (vs. Celiac) or those who have Celiac but don't come up positive on traditional testing. Its really interesting to me...why are there some families like yours (Full of Celiacs!) and others (even through testing) have only one....

[CarlaB]

My guess is that for relatives to all be biopsy proven celiacs, the rate very well could be 10%. It seems that a large percentage of us here either didn't have the biopsy or the biopsy was negative, but we have positive dietary response, and some have positive Enterolab or blood tests. Technically, I would not fall into the category of celiac for their study as my biopsy was negative after being gluten free and only going on a six week gluten challenge.

[eKatherine]

However, this study does not take into account "mere" gluten intolerance (vs. Celiac) or those who have Celiac but don't come up positive on traditional testing. Its really interesting to me...why are there some families like yours (Full of Celiacs!) and others (even through testing) have only one....

It also doesn't take into account the difference between clinical gluten intolerance and subclinical.