A Question For Families With Celiac

[3groovygirls]

Is Celiac something that requires frequent Dr. visits? Or is it something you get diagnosed with and now that we know we're free to go about life and don't have to go back every year for a check?

Now that we know Violet has it, I'm guessing we all should get checked. We're in Virginia and I know University of Maryland is the big Celiacs research center so I'm wondering if we should ALL just go get checked there or since they have a great reputation and dieticians, etc. Or if you don't have to go that often and simply need to know if you have it I'll just get checked at my GP and the other kids at Violet's GI. I like Violet's GI, but he's a typical GI who does a lot of surgery, etc, and Celiacs isn't his specialty. But then if we already know she has it, and the gene and that's it we're free to go, have a nice life then there isn't much point in going to U of MD right?

Just curious WWYD and how it works now that we know she has it!

Linda

[mommida]

We have been advised to visit the Ped. Gastro. once a year. There are other auto-immune diseases that have a connection to Celiac Disease. Tests can be done to determine how well the gluten free diet is helping and if testing for other known associated diseases.

By the way our daughter was just diagnosed with Eosiniphilic Esophagitis. It could have only been diagnosed by endoscopy with biopsy and a knowledgable Ped. Gastro. At this time little is known about long term affects of EE or if there is a connection to Celiac. I admit some of the early symptoms were probably missed because of the first diagnoses of Celiac.

So always stay on top of you and your families health.

Blessings to you and yours!

[Tallforagirl]

This article https://www.celiac.com/articles/21682/1/Mor...ease/Page1.html gives a good idea of what follow-up should occur and why it's neccessary.

[lizard00]

When I found out my genetic risk and my doctor gave me a clinical diagnosis, my mom and my son both got tested. (Although my mom told me a bit later after she did it) But I KNOW that genetically my son is at risk for it, so I had him screened. Dr Green's book recommends that if someone in the family is diagnosed, then everyone in the immediate family should also be screened. Since symptoms can be so different, or even non existant, looking for classic symptoms to appear isn't always the safest course.

As for my health, my GI diagnosed me in June. I've seen him twice since then, and I'm going to see him in April. He just talks to me, but he wants to make sure nothing new is going on. It's kind of like when you have all those prenatal checkups... the doctors don't do much, but they're necessary. We are at an increased risk of other health problems, so I look at it as preventative medicine.

[Marie2375]

As far as follow-up frequency goes, Univ MD likes to see you 6 months after dx, then yearly after that. Of course, you can make other appts if needed. They order blood work about 2 weeks before the appt so it will be available when you get there. This is post dx, not screening. Any blood work for screening purposes will be done at your appt. My husband has celiac disease. All 3 of our sons have had the Celiac Panel and the gene test. Two of them tested positive for the gene with mixed results on the panel.

My husband sees Dr. Fasano at the U of MD Celiac Center. My sons see Dr. Safta. (She sees kids. I don't think Dr. F does that anymore.) Dr. Safta is very nice. She will listen to your concerns and answer your questions. She also respects your choices as a parent. They do have a very conservative stance on dx celiac disease. My youngest ( 1yr) has the gene and elevated IGA antigliadin antibodies. He also had never had a solid poop. His biopsies came back negative, so she will NOT dx him with celiac disease. She agreed that it is fine for him to be gluten-free though. Her advise was to keep him gluten-free and do a gluten challenge with a repeat biospy when he is between 5 & 7 years old. She also reminded me that a lot of research is being done, so by the time he is 5, there might be other options available. After a lot of discussion, she did agree that based on his family history, symptoms, gene and response to the diet, he probably does have celiac disease, or is developing it. He also has low iron. She said that if his iron goes up on the gluten-free diet, that is another indicator that he has celiac disease.

Hopefully that gives you an idea of what to expect if you do go there. They are kind and flexible, but also cautious when it comes to diagnosing. If you do decide to go, expect to wait a while for an appointment. You have to schedule new patient appts about 2 months ahead. Also, they no longer do gene testing through Prometheus labs. They had a lot of problems with billing for them, so they use Quest and LabCorp now.

If you get lab work done, they can do the blood draw there. The lab techs are AWESOME. They are nice to the kids and FAST. It takes forever to get the results though. They tell you to wait 3 weeks before calling. I usually call after 2 weeks and they have the results already. It seems to take a while for them to process them though.

If you decide to go there, feel free to PM me any questions. I can give you the low down on parking, vending machine locations, etc. LOL

[Amyleigh0007]

My son had the bloodtest in early March, the first biopsy in late March and then another biopsy in July. The doctor wants to see him again this July for follow up bloodwork. I believe he (the doctor) said follow up bloodwork would be once a year, to check antibody levels.

[triathjt]

We're in PA and we go to U of MD. My daughter (now 2 1/2 yrs old) was diagnosed just over a year ago. We saw Dr. Fasano for an initial visit in Feb of 08 and then again in June of 08 and Dec 08. Since her levels look good and her growth has been fantastic, we only have to go back once a year now.

We know that my 10 month old has the DQ8 gene and so is enrolled in a study with Dr. Fasano's group. I can't say enough about Dr. Fasano and his group. I have received calls from him personally when I have had questions/concerns and the entire team is extremely responsive and caring.

If you have any questions about Fasano, etc. let me know. Good luck!

[3groovygirls]

Thanks guys! I think what we'll do is go to Violet's GI for one more visit and see how we like him again and if not switch to U of MD.

A question on the diagnosing though. My DD reacts SO violently to gluten that she cannot be on it and hasn't since she was 9 months old. She was losing weight, vomiting, diarrhea every hour - scary stuff for a baby! So V's GI said the regular test and biopsy would be negative (She's 20 months now) b/c she's been off gluten so long and basically never been on it since she reacted so bad. So he did the genetic test and said if she has the gene we can deduce that Celiacs is the cause. That's how he diagnosed her and said they do it in cases like her. So if she went to U of MD they would say she DOESN'T have Celiacs?? B/c she can't have the biopsy? He said given her reactions and how tiny and slow her growth is is it would be dangerous to put her on gluten "just to get" the biopsy and we can very safely assume Celiac with the gene and her reactions which are "classic" baby Celiacs. So what would they say at U of MD? That she isn't???