Two Kids With Celiac's?

[WhenDee]

I have undiagnosed Celiac's. We live in a country with third-world medicine and my husband begged me not to have the tests run. We have seen an expat die here from simple bone-setting, so I agreed. However, after doing a strict elimination diet under medical care & seeing a COMPLETE remission of several debilitating problems, I'm staying gluten-free. Also, I found out afterwards that it runs in my mother's family (had no idea before).

Anyway, I have suspected my daughter (age 10) may have it. She had to have her tonsils out a year ago after a series of perpetual infections (low immune system, as I had). Her skin is always sallow, and her hair doesn't grow (a weird side effect I also had). Socially it has been difficult, so I planned to take her gluten-free this summer to test it. I don't want to impose something on her that could make her feel awkward unless we're sure.

However, now my son (age 7) has turned up with frequent migraines! Sudden onset and now he's having them more than once per week. I don't know what to think of this.

This summer I guess both kids will go gluten-free with me. But I'm wondering - aren't the odds of both of my kids also having this rather LOW? In my mother's family, out of 9 children ONE of them had this (not my mother) - then only ONE of her kids has it.

It's quite frustrating to not be able to simply go be tested for it. On the other hand, I would never have found this if we hadn't moved overseas - my US doctor was completely stumped. He actually said, "I believe you have an autoimmune problem related to your digestive system" but never considered Celiac's.

Is Celiac's becoming more common as our gluten products become more processed? Is it increasing in each generation like type II diabetes? I'm really wondering about all this. That both of my children might have this has me completely baffled.

[mushroom]

Well, you do have to consider that if one parent has the gene there is a 50% chance of passing on the gene to a child. If both parents happen to possess a celiac gene then the odds increase greatly (I don't know how to calculate them because I am hopeless at math ) Then you have the variable that celiac usually requires a trigger to activate it - the mere possession of the gene only predisposes you toward developing it. It could be that the increased concentrations of gluten in our diets is making a triggering event more likely. Triggering events, as I am sure you know, are generally physical or emotional stress on the body, including childbirth, serious illness or injury, divorce or other emotional trauma, etc. That being said, some babies are born with it, perhaps the stress of being born?? It is really not unusual these days to find several family members with the disease. Looking at my untested family, I can pretty much predict that we all have it, including both my parents (who are deceased).

[ravenwoodglass]

We found in my family that everyone is celiac so it is quite possible. We tested both kids 6 months after I was diagnosed and both showed up on blood tests. That prompted my ex to get tested and his results were positive also. I don't think having multiple celiacs in a family is unusual at all but since it is not tested for a lot in the US many are misdiagnosed with something different especially if they have presentations like migraines, mood issues or issues with growth rather than the more commonly thought of constant D.

[srall]

I don't know the statistics, but my mom, myself and my 8 year old all have it...well, gluten intolerance. I guess I can't say "celiac" since we had "normal" blood tests. My daughter had the most official diagnosis as her pediatrician was willing to diagnose her gluten sensitive based on dietary response. My 40 year old brother has a gluten intolerance beyond the shadow of a doubt but he also tested normal for celiac and is not willing to give up gluten despite debilitating gut pain for which he takes a medication that costs $1000/month (according to him...I don't know for sure), which is fortunately covered by insurance, depression that is treated with Lexipro, and now he has been diagnosed this past year with diabetes. (That is quite a rambling sentence...sorry). So...there you go. (I don't really know about my dad) Oh...I was going to also mention that my brother did Adkins a few years back and that's the only time he's felt great in his adult life. He attributes it to the fact that he wasn't eating sugar. But my mother and I know differently. But...will he listen to us? Of course not. So at this point we keep our mouths shut and try to not meddle...except we are keeping an eye on his sons. Not meddling in your little bro's life is a hard habit to break, I guess.

One thing I find interesting, and is apropos of nothing is that my mom, daughter, and I all have different food intolerances. My daughter and I cannot tolerate corn at all, but my mom is fine. I can do gluten free oats, and this makes my mom as sick as gluten. My daughter and I cannot handle dairy, but my mom is fine. So, even though we are across the board with wheat, the other usual intolerances are different.

[WhenDee]

Thank you for the replies. I thought the odds were only about 10%... if it's actually 50%, that is much more likely then.

My daughter has shown signs of mild problems all her life - behavioral mostly. The triggering event here could be our move overseas. That was pretty hard.

@srall... I totally understand. After I found this, I thought back to my sister-in-law, who told me after trying Atkin's that she had found that any time she eats bread or pasta she gets very sick. I emailed her to tell her about finding out I had Celiac's, that there were many levels of sensitivity, and that she should consider getting checked. Her response? To completely ignore me.

Ah, well. I feel *fantastic*. If she chooses to stay ill, it's her business, right?

[sa1937]

WhenDee, according to the Celiac Disease Center at the Univ. of Chicago, it's 1 in 22 for first-degree relatives and 1 in 39 for second-degree relatives. My daughter also has celiac.

Too bad about your SIL...there's not much you can do if she prefers to continue eating those foods which make her ill. At least you tried!

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