Testing After Family Member Is Found Positive

[Sam'sMom]

My son was diagnosed with Celiac per a blood test about a month ago and has been gluten free ever since. When he accidentally gets contaminated he feels awful. My husband and I and our other son have been planning to get tested per everything I have read since.

My husband had a physical today in the same practice where our son was diagnosed and asked for the blood test. His Dr told him if he doesn't have any symptoms, he doesn't need to be tested and that our insurance wouldn't cover it. I was pretty irritated when I heard this as everything I've read said all 1st degree relatives should be tested regularly, and even to get the genetic testing to see if this periodic testing is even necessary.

My husband also had his gall bladder out last year, and I've now read there is a pretty strong connection to this and Celiac and his father died at 64 from bile duct cancer which we are now wondering about. Soooo, are we all supposed to get tested or not? Does insurance cover it if you have a 1st degree relative with this disease? Is it true that you could be asymptomatic? Are the genetic tests very involved and are they expensive? Even if you are asymptomatic, how long would you have to have it before you became symptomatic, and how are you supposed to know while this damage is happening if you don't get testing periodically. He got this disease from someone right?

Thanks for your help, I'm feeling a bit lost.

[Marilyn R]

I think my blood pressure actually increased when I read your post. Even if your husband is asymptomatic, he could be the carrier, and he could have celiac disease. The research you've done is true.

The doctor is probably pressured by the insurance company to keep diagnostic testing costs low, but even then being a first degree relative of somebody with a dx is a red flag. I would insist on the blood test, even call the office and tell them that your husband was too embarassed to report frequent diarreah, and you want to pick up lab orders.

It seems that most mainstrem doctors only associate celiac disease with D or malabsorbtion. Even if your husband has an hmo, frequent diarreah is a qualifying diagnosis for the blood test.

I am not a liar, but if I had to lie for somebody I love to an insurance company just to get a routine blood test, I can sleep and live without conscience.

[JoshB]

Depending on what study you're looking at your risks are only 5~10%. Still, for such a serious thing I would be inclined to test.

If worse comes to worse, you can order the test yourself for about $250 (with the "total serum" option). Depending on your insurance, you might not being paying much more in the end.

[The Horticulturalist]

I think your doctor is barking up the wrong tree and ill informed.

Call the hotline at the Celiac Disease Center at the University of Chicago, if you get the answering machine you can leave a message and they will call you back within a few days, they are very, very helpful and will be able to give you a much clearer picture of what you should do next.

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I would call your insurance company and see if you're covered to get testing for 1st degree relatives, I know my BCBS covers it, but yours may not. Again the UofC Celiac Center may be able to give you an idea of whether most insurance policies typically cover this.

[pain*in*my*gut]

My son was diagnosed with Celiac per a blood test about a month ago and has been gluten free ever since. When he accidentally gets contaminated he feels awful. My husband and I and our other son have been planning to get tested per everything I have read since.

My husband had a physical today in the same practice where our son was diagnosed and asked for the blood test. His Dr told him if he doesn't have any symptoms, he doesn't need to be tested and that our insurance wouldn't cover it. I was pretty irritated when I heard this as everything I've read said all 1st degree relatives should be tested regularly, and even to get the genetic testing to see if this periodic testing is even necessary.

My husband also had his gall bladder out last year, and I've now read there is a pretty strong connection to this and Celiac and his father died at 64 from bile duct cancer which we are now wondering about. Soooo, are we all supposed to get tested or not? Does insurance cover it if you have a 1st degree relative with this disease? Is it true that you could be asymptomatic? Are the genetic tests very involved and are they expensive? Even if you are asymptomatic, how long would you have to have it before you became symptomatic, and how are you supposed to know while this damage is happening if you don't get testing periodically. He got this disease from someone right?

Thanks for your help, I'm feeling a bit lost.

Wow. Just....Wow. This kind of medical ignorance makes me sick to my stomach. My doctor, who I love dearly, unfortunately told me the same FALSE information about getting my 6 year old son tested. No need to do it unless he is showing symptoms or failing to thrive. WRONG!

Here are two things you can print and take to your doctor:

People with celiac disease may have no symptoms but can still develop complications of the disease over time. Long-term complications include malnutrition

[T.H.]

Argh.

Sad that your hubby's doctor is so ignorant. He's probably causing a lot of people to go through a lot of pain, with that level of ignorance.

More people now with 'no' symptoms are testing positive for this disease than those with traditional symptoms, in recent years. My father had this 10 years ago. We didn't know the rest of us should get tested, so we didn't until 2 years ago. When we tested, three more of us came back positive, but not before permanent damage was done to our bodies - joint problems, arthritis, and complications from diseases that wouldn't have happened if our bodies weren't so toasted that our immune systems were shot.

My daughter has probably had this most of her life. She's only 13 now and already has to go see an endocrinologist because her thyroid seems to be having trouble, and a ped. GI because even gluten free, she's now having gut problems where she never did before. Her teeth enamel is screwed up, her bone structure in some areas seems off, she has tons of skin issues now. It makes me SO mad sometime that we never got her tested before we did. >:-(

So, doc says your hubby doesn't have symptoms? Here's a list of 300 symptoms for celiac disease:

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Bet your hubby will have some of these.

Is it true that you could be asymptomatic? Are the genetic tests very involved and are they expensive? Even if you are asymptomatic, how long would you have to have it before you became symptomatic, and how are you supposed to know while this damage is happening if you don't get testing periodically. He got this disease from someone right?

To answer the questions specifically.

- yes, you can be asymptomatic. Unfortunately, you can be asymptomatic until the day permanent damage is done, like with my father. No gut problems at all, and then within a couple years, they found out that all his major joints eroded away, every disc in his spine herniated, he developed bleeding ulcers in his gut, and severe depression. He used to bike 15 miles to work every day, and then before the age of 45, he was using a cane and unable to walk without severe pain. With celiac disease, no symptoms does NOT mean no damage. It just means damage they haven't found yet.

- genetic tests are of limited use. 1/3 of the human population has the genes for celiac disease, I understand. But the disease has to be triggered somehow (they don't know how, yet). So a genetic tests just gives you the possibility that you could develop the disease. It won't tell whether you have it or not. So this applies to family members, too. If you have the disease, then you got the genes from someone in the family. But the question would be whether they have the disease triggered in them or not.

- the damage issue can definitely be a problem for those who are truly asymptomatic. However, for most of us, after going gluten free, we develop reactions to gluten that we can detect. We get more sensitive. I was asymptomatic, but now, if I get gluten cc, I get a huge vertigo attack within minutes. Still no real gut problems, just the vertigo. Many of us are like that: headaches, dizziness, joint pain...all sorts of weird, funky stuff.

If you cannot get the doctor to test, or if the insurance won't pay? Good news is that gluten isn't a required nutrient. There's no meds, there's just learning about gluten, avoiding gluten contamination, and eating gluten free. So no matter how counter-productive the doctor is, your hubby could still try the diet, you know?