I am so upset today!

My son (19) is home from college for the summer. I thought it would be a good time to get him tested. I called his doctor last week and left a message with a nurse to see if we could get my son in to get him tested for celiac. I told them I was positive. She said someone would call back. They never did.

I called today. Spoke with nurse again. She called me back and said his doctor said if he doesn't have any symptoms he can't get tested!

I said: look, my mom died from this, my sister now has lupus, I have malabsorption issues, thyroid problems, etc. I don't want my kids to get to that point. I want him tested now-- just start with the blood test.

The nurse said she'd give the doctor that message and call me back. She called back and said the same thing-- if he doesn't have symptoms, he can't get tested.

And I said "what if he's asymptomatic?" She said he can't get tested until he has symptoms!!!

Now, we've got to go through the same stupid stuff I did and get another doctor.

I know he could just try the diet and see what happens. But my concern still is that what if he really does have it and he's asymptomatic now and he doesn't notice a difference with the diet? Then it could lead to all kinds of problems. Or, what if he doesn't have it yet, but may develop it later.

He thinks he's fine. But I go over stupid stuff in my head, like when he was a baby he had lots of digestive issues. He was tested for CF. And he has lots of allergies. Once his allergist asked if he'd ever been tested for celiac disease and I didn't know what that was so I asked him and he said, talk to your pediatrician about that. So I did and his pediatrician said, he doesn't have bad digestive trouble anymore so he can't have that.

Oh, I'm so mad right now I can't even sleep. It's so hard because my son probably doesn't care if he's tested or not at that point, because he doesn't think he has it. But, being a mom, I just think I need to make sure.

You could maybe get him tested for the gene which could help you rule it out. If he doesn't have it, he probably won't have Celiac Disease. If he doesn't have the gene I know he could still have gluten intolerance, but it sounds like Celiac Disease is the real bad one in your family. Enterolab does the gene test using cotton swabs in the mouth for about $150 and you get an answer within a couple of weeks. You wouldn't need to get doctor approval to get it done, too. I know the other tests they offer there many question the validity, but the gene test is the same process other less contested labs (like Prometheus & Kimball) use. Check out www.enterolab.com. We just did it for our 18 month old daughter.

2 things.

1) you can have the allergist order the tests
2) the doctor works for you; you pay him. you can order the tests are taken, or go elsewhere. it is totally possible that he'll say they aren't medically necessary and you'll have to pay the costs (because he won't justify it to insurance), but it is an option.

oh, a third option: print out the NHS conference paper on celiac and the number of asymptomatic folks, give it to him, and try again. *only* use published, peer reviewed, research when trying to give more information to your doctor and do *not* use the majority of websites as "proof".

I know here in Holland the recommendation is that ALL first degree relatives of a diagnosed celiac get tested just in case. Actually I know some families where the children get periodically tested (like every five years or so) just in case. The reason being exactly like you said, they might be asymptomatic, and having a celiac family member the chances are fairly high that they might have it, or develop it too.

Pauliina

I've been trying to convince my 18-year-old to get tested, but he just laughs and says 'no way.' In your case, can you find a gastroenterologist to test your son? My psychiatrist was very upset that no one had sent me to a gastroenterologist at any point during the past 42 years, and he said that I should just go ahead and go, because he felt that this was the only way to make sure the problem is properly addressed. Make sure your son keeps eating wheat until after he goes to the specialist, though. I diagnosed myself and went off the wheat too soon, so I won't be able to get a blood test to confirm what I already know, because there's no way I am going back on that poison for a 6-week gluten challenge. I do plan to see the gastro guy once school is out for the summer and I'm off.

Perhaps if you make clear that you will take your business elsewhere if the doctor won't test your son, the doctor will then have a change of heart. I would try to talk directly to the doctor also, not through the nurse. Or will that cost you money?

Reflecting on this statement, it seems very sad to me that this common idea (oh, I don't want to see the doctor for that, it'll cost money) is soooo prevalent in the US. (This isn't meant as a reply to you hathor, but your statement got me thinking.) If you value your health, you will be willing to use your resources (time, money, energy) on it - more so the more you value your health. It's just like any other thing that way.

Don't let paying for a doctor's visit keep you from taking care of your son's health, but consider that if you're going so far out of the normal 'system', and having such difficulty working with this doctor, what other areas you'll have difficulty working with him in.

Good advice from others. Just to let you know this hapened to me too.
My son's(he's 9) pediatrition had the same ideas about celiac disease and testing, although she was much nicer about it. I repeatedly asked for a gene test and when my husband took him in for the test she tried to talk him out of it and he firmly asked for a gene test and she said ok we'll do a celiac panel. Well, when I got the results back there was a celiac panel with three tests and no gene test! I won't put my son through another blood draw right now but next time he need blood drawn for anything I'll make sure they do a gene test.

My sister's doctor wouldn't test her and she is very sick and clearly has symptoms so I helped her find another doctor.

Thanks for all your replies. I'd like to go in and "educate" the doctor with information. But I think my first plan of action is to call the new doctor that I just switched to. I went to him to have some tests run (like bone density). He thought I was going to him for the initial celiac test (which I'd already had) so he gave me his little celiac speach and when he was done I told him I was already tested.

But he did say he'd have no problem testing me. So hopefully he'll have no problem testing my son. It's just hard because my son had the same doctor for 19 years, but I guess it's time he switched anyway.

I'll try calling the new doctor today or Monday and see how that goes.

Thanks.

I won't put my son through another blood draw right now but next time he need blood drawn for anything I'll make sure they do a gene test.

My sister's doctor wouldn't test her and she is very sick and clearly has symptoms so I helped her find another doctor.
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Maybe the next time your son is in for something you could get them to do the genetic panel through the cheek swab.

That's too bad about your sister's son. Hope he gets tested and begins to feel better soon!

This is a great idea. Thanks. I'm considering this. But if he tests positive we'd have to get further tests done anyway. So I was thinking about skipping this part and starting with the blood test. But I don't know. $150 is a good start and then we'd at least know if it's in his genes or not. I might look into this. Thanks.

My son's Ped was the same way! He said that b/c my son didn't have any symptoms (though he did have occasional constipation, irritability and was being evaluated for ADD) he didn't see the need to test him. DS was also growing well and was in the 75th to 95th percentile. I finally brought some info in for him on kids with Celiac not necessarily having the "classic" symptoms and he tested him. His bloodwork was astronomical and we followed up with the biopsy that was positive. I felt like doing a little "I told you so" dance right in his Ped's office, but I didn't. (not that I was glad that my son had Celiac, but I am glad that we figured it out now instead of 20 or 30 years from now).

I hope that you can get your son tested through your dr.

If you do a search you should be able to come up with the NIH paper on celiac. In it they recommend ALL first-degree relatives be tested, symptoms or not.

richard

http://consensus.nih.gov/2004/2004CeliacDisease118html.htm

"There are a number of populations at higher risk for celiac disease. These include individuals with type 1 diabetes mellitus, other autoimmune endocrinopathies, first- and second-degree relatives of individuals with celiac disease, and individuals with Turner syndrome. Individuals and physicians should be aware of the increased prevalence of celiac disease in these groups. Symptomatic individuals in these populations should be tested for celiac disease; for example, an individual with type 1 diabetes mellitus and unexplained hypoglycemia merits testing. Because current data do not indicate a clear outcome benefit for early detection and treatment of asymptomatic individuals in these groups, routine screening cannot be recommended at this time, but individual discussions regarding the benefits and consequences of testing are warranted. Other populations at increased risk for celiac disease include individuals with Down syndrome and Williams syndrome. When individuals in these groups are unable to describe symptoms, screening may be appropriate and should be offered."

and
http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm

Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%).

The reasons to diagnose family members prior to the development of symptoms include the prevention autoimmune diseases and malignancy.

"Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%)."

Yeah, try telling this to my sister with Lupus and celiac symptoms who refuses to get tested!! I think she should meet Jerry's brother!

Anyway, thank you for the valuable information. This is good to have.

Wolfie,
It is wonderful that you pushed for the testing. From someone who had to suffer for 42 years before I diagnosed myself, you have saved your son so much suffering, mental as well as physical.

The other tricky thing about being "asympomatic" is that you often don't realize you have symptoms until you go gluten free. A lot of them slowly sneak up on you so you don't even know that's not normal.

I'd get a new doctor. Even if you do stay with this one and somehow get your son tested and he's got it, this doctor sounds like he's going to be a pain to work with. The kind that will give you the evil eye when you try to explain how you diagnosed by blood test and dietary response and not a biopsy. I'd get a celiac-friendly doctor now! It's also possible he doesn't have celiac yet and will develop it in the future and in that case I'd also want a doc who is willing to do yearly tests for celiac and be on the lookout for potential symptoms.

Thank you so much! Because I was actually wondering about this: if you went gluten free would symptoms start to slowly appear.

Right now I'm in kind of a rural area and trying to find a celiac friendly doctor isn't easy. But I think I will try to bring him to the doctor that was willing to test me. He seemed pretty open about it.

Thanks.

I guess I was more refering to him maybe having symptoms that he doesn't realize are symptoms until he goes gluten-free and they disappear. I had no idea my constant itchy, watery eyes and depression were gluten related until I woke up one morning several months after going gluten-free and realized they were gone. Mild symptoms are usually just minor annoyances that you learn to deal with and don't think "hey this isn't normal".

Sounds like you might be talking about if he goes gluten-free will he start reacting to gluten. Yes, it's very possible he might. It's also possible he might not. Many people talk about their symptoms when glutened being worse than they were prior to going gluten-free, but for me it's the opposite. I don't get nearly as sick now; usually I'm just minorly inconvienenced by a glutening.

It is hard to find a good doc, especially if there aren't many options where you live. Your doc sounds like the best bet right now. You said he was in college? Maybe he can find a celiac-friendly doctor when he goes back to school. I know this doesn't help for testing now, but if he spends most of his time at school, it's probably more important to have a good doctor there.

I am sorry to hear that you suffered for so long!! I also went through at least 10 years of "IBS" issues before my dietician suggested that I be tested for Celiac. I don't wish that on anyone. I hope that you are doing better now on the gluten-free diet.

http://www.stanfordhospital.com/clinicsmed...acSprueOverview

First and second degree relatives of Celiac patients are at increased risk of the disease and should be screened.

Perhaps send him what Stanford Medical Center recommends.

Ditto on the minor symptoms. Or as an elderly person told me one time "All good things in life must pass, the bad things hang around and you keep inventory." I hadn't realized how many things I had added to the list of "ignore it and go on" until it wasn't there.

My Mom's doc wouldn't test her because she was asymptomatic and overweight. Her only symptom was muscle cramps in her legs. He finally agreed to test her when I told him I would pay for the test if it came back negative. I didn't have to pay for the test. :-)

I guess it's hard to know if he's really asymptomatic until he's tested. And if he tests positive, it may be like you said, and he'll look back at things and understand better why he had those things going on. It's easier with my daughter, who I also have to get tested (and we're working on it) but she has hip pain and other things going on. And I think she's been soooo tired most of her life! With her, it would explain a lot. But with my son, I think it's a little different.

I thought about the college thing. I told him the other day that someon on the board here is a college student and got tested by the nurse there (of course, he had to explain to her what celiac was and which tests to run!! haha) but he got tested there. So I told my son about that and said maybe we'd go that route. I'm just going to check to see how that would work with his insurance.

Thanks for all your input. It has helped a lot! It seems I have a few options to consider.