Should Fiance Be Tested?

[genicol]

Hi. I'm venturing to a new forum and have a question. My fiance and I have a 20 month old daughter that was diagnosed with celiac last Thursday. I strongly believe that he has it too, but his dr. isn't cooperating with us. I scheduled an appt for him, but when he got there they said they were really overbooked and rescheduled his appt. The worst part about it is that I actually had to spell celiac to the nurse when I made the appt. because she had never heard of it Anyways, would it be best to find a new dr. for him, or stick it out with this one? I think that they are getting tired of him after everything he has been through. He had his gallbladder removed 7/05, got pneumonia from the surgery which turned into pleurisy. He was sick until September, and still doesn't feel good. I think the dr's office thinks I'm a hypochondiac when it comes to him, but I'm really concerned. He actually was supposed to go to a GI last year after the surgery, but was so sick we had to cancel the appt. He has a history of Chrone's, ulcerative colitis, and IBS that runs in his immediate family and that was a concern last year, but I think it is Celiac, especially after our daughter's dx. My main concern is that he also has high bp, high cholesterol, and low thyroid. Could any of these problems be linked to celiac? Should we find another dr. even though she has been treating him for all of this for many years? I think we should, but he's not one for major changes! Please help!!! Thanks !!

[Ursa Major]

If this doctor has been treating your fiance all these years without suspecting celiac disease, she is incompetent. Therefore, finding a new doctor who actually understands about celiac disease sounds like a great idea.

He has a history of Chrone's, ulcerative colitis, and IBS that runs in his immediate family and that was a concern last year, but I think it is Celiac, especially after our daughter's dx. My main concern is that he also has high bp, high cholesterol, and low thyroid.

That sounds like it would very much surprise me if celiac disease wasn't the underlying cause of all of those illnesses, especially with your daughter being diagnosed with celiac disease. And I bet that celiac disease runs in his family. Many of us were diagnosed with a lot of those problems before being diagnosed with celiac disease. I am quite sure all of those would improve on a gluten-free diet.

[tarnalberry]

He *definitely* should be tested. The reasons I think so:

1. IBS is the most common mis-diagnosis of celiac disease. Some studies suggest testing everyone with IBS for celiac.
   
2. Your daughter has it. There's a 1 in 20 chance for first degree relatives of a celiac to test positive for celiac disease.
   
3. Impared thyroid function, particularly if it is autoimmune in nature, *is* correlated with untreated celiac disease.
   

I wouldn't give up one the doctor out of hand - they're trained to see celiac as a very rare thing, and hence look for other things. Turns out they're taught wrong, of course, but it's a sensible approach when the facts are correct. It's more disconcerting, however, that they get so busy they reschedule you, and that you seem to have a lot of trouble getting into this doctor. If your husband had a good rapore with the doctor, and they have a good doctor-patient relationship, there's no reason to waste that. Sometimes even good doctors get crappy staff. :-/

[Rikki Tikki]

I would ask that the doctor run a simple celiac panel blood test. I was diagnosed 3 years ago after several years of being really sick. My mom got tested last year because she was very ill, this after the doctor told me he didntr much believe in celiac but I said pretty please test her. Then my brother decided to get tested even though he wasn't having symptoms, the biopsy showed almost no villi, I say we should do like Europe and have every child tested before age 6 I think it is. I would also be tested to if I were you.

[Daxin]

Maybe I missed it, but have you yourself been tested? Just to cover all the bases? I did not start showing symptoms until last year. Just a thought.

But I can see why you say he should also be tested.

[genicol]

Maybe I missed it, but have you yourself been tested? Just to cover all the bases? I did not start showing symptoms until last year. Just a thought.

But I can see why you say he should also be tested.

No...I have not been tested. I haven't ever had any problems, and can tolerate gluten fine. I strongly believe that it is all on his side of the family. To be honest, I never even heard of Celiac until I got the call to schedule the endoscopic biopsy for our daughter! I'm very thankful that they caught it early for her!

[ravenwoodglass]

No...I have not been tested. I haven't ever had any problems, and can tolerate gluten fine. I strongly believe that it is all on his side of the family. To be honest, I never even heard of Celiac until I got the call to schedule the endoscopic biopsy for our daughter! I'm very thankful that they caught it early for her!

My DH was of the opinion that both my children's celiac came from only me. It took me 4 years to get him to be tested. He also thought he had no symptoms. He was positive and it is only after a couple of months gluten-free that he has come to realize how gluten was effecting him, just not in the way most US doctors think. You also need to be tested as well. It is also much easier to make your home safe for your DD when it is a completely gluten-free home. You don't need an appointment to get the tests done. Your doctor can write a lab slip that you can pick up or even call one into the lab. This should be done immediately. If the doctor refuses I would find another doctor. US doctors are so reluctant to even test for this that it is almost criminal and IMHO is very mercenary in origin. After we are diagnosed for many visits to the doctor become a very occasional thing, the doctors and the pharmacutical companies have a lot of money to gain by not looking for celiac.

[Luvs to Scrap]

My DH was of the opinion that both my children's celiac came from only me. It took me 4 years to get him to be tested. He also thought he had no symptoms. He was positive and it is only after a couple of months gluten-free that he has come to realize how gluten was effecting him, just not in the way most US doctors think. You also need to be tested as well. It is also much easier to make your home safe for your DD when it is a completely gluten-free home. You don't need an appointment to get the tests done. Your doctor can write a lab slip that you can pick up or even call one into the lab. This should be done immediately. If the doctor refuses I would find another doctor. US doctors are so reluctant to even test for this that it is almost criminal and IMHO is very mercenary in origin. After we are diagnosed for many visits to the doctor become a very occasional thing, the doctors and the pharmacutical companies have a lot of money to gain by not looking for celiac.

My son and husband have both been diagnosed with celiac. I don't think I have it but have had stomach issues all of my life so its a possiblity. I am wanting to approach my doctor about getting tested and also getting my daughter tested. He was reluctant to test my husband and later my son due to the fact that they both look very healthy and Luke has been off the growth charts since birth. Both of the guys had consistent problems with D. I go from one extreme to the other so I am wondering if anyone has tips of how to convice a dr to test without obvious symptoms. Is is recommended for parents of celiacs to always get screened even if the other parents's family obviously carries the gene? (My husband's grandma has celaic and is the reason we finally forced the testing issue with him) The more I read this forum the more curious I am if I have it too but I have no family history of it and wonder if I am just imagining things. Anyway I would appreciate some input to tell my Dr. Thanks! Kendra

[lovegrov]

ALL first-degree relatives should be tested, including yourself, even if you have no symptoms at all. Your fiance's doctor sounds incompetent.

richard

[Luvs to Scrap]

ALL first-degree relatives should be tested, including yourself, even if you have no symptoms at all. ]

Thanks Richard. I called our GP doctor today expecting the run around and his nurse called back and told me that he is faxing the orders over for Kirsten and me to have the blood test. (I guess the third request is a charm since we had to push the issue with Jason and Luke.) I have a sitter for Luke tomorrow morning so we will head to the lab. Praying that Kirsten's test results are accurate since she is 17 1/2 months. She has symptoms so hopefully they are. Kendra

[Rikki Tikki]

I agree all first degree relatives should be tested. I wsa diagnosed approx. 3 years ago, then last year my mother got really sick and was diagnosed with celiac, then just because my brother was concerned he had himself tested and it was positive for blood, the biopsy showed no villi and it had affected his bones. One of my daughters has also tested positive. Heck, I think everyone in the Country should have the blood test! I really think it would save a lot in health care costs and we would have a bigger selection of food on the market

[genicol]

UPDATE - He had his blood test on Monday the 10th. We are still waiting for the results. He did hear from his doctor on Friday and got the news that his thyroid was so low that he should be dead or at least in the hospital. That made us feel great...lol! I told him that he needs to call today to see if they have gotten any other results back. By the way, they tested him for just about everything. After taking 14 viles of blood, I figured we would be hearing more things by now! I didn't think it would take this long, but considering the people in the lab had no idea how to do the celiac test, it doesn't surprise me. I feel that we have the most incompetent doctors and hospital staff ever! I will let you all know when we finally get the results!

[GFBetsy]

I'm glad they finally agreed to test him for it. You probably ought to be tested as well, because 1st degree relatives (parents, siblings, children) of people diagnosed with celiac have a 10% chance of having it too. And just because your fiance looks like he has celiac, that doesn't mean that you DON'T have it . . . unfortunately!

[Luvs to Scrap]

Nurse told me today that Kirsten and I came back fine--no celiac according to the blood test. I am still not convinced that she doesn't have it. She still is having lots of D and varies with constipation too. Should we save up for enterolab? Wait a couple of years and try bloodwork again or just start her on the diet too and forget a diagnosis? I am frustrated because DH says to just wait but I don't want the same D issues with her when we try to potty train that I have with DS. Confused on what to do and wishing I felt comfortable with the results. Kendra

[Rikki Tikki]

I don't know enough about enterolab to answer that, but I have heard a lot of people say they liked using them and that depending on the type of tests, there are a lot of different costs involved, not all of them are the really expensive ones. I am sure someone will answer this for you.

[ravenwoodglass]

Nurse told me today that Kirsten and I came back fine--no celiac according to the blood test. I am still not convinced that she doesn't have it. She still is having lots of D and varies with constipation too. Should we save up for enterolab? Wait a couple of years and try bloodwork again or just start her on the diet too and forget a diagnosis? I am frustrated because DH says to just wait but I don't want the same D issues with her when we try to potty train that I have with DS. Confused on what to do and wishing I felt comfortable with the results. Kendra

What you do is get her on the diet and see if it helps. You could do enterolab of course but the best way IMHO is to get her on the diet and see if her problems resolve, then you would have your answer.

[beaglemania]

I say find a new doctor. Also he should be tested for Celiac Disease. You need to find out who she got it from and whats family side is it from.