How To Get A Specialist Appointment

[CeliacMommaX2]

How do I go about getting an appointment at a celiac center (University of Chicago or Mayo...).  Do we get a referral or just call and ask for an appointment?  Would we just get one appointment or would we need to ask for one for each kid?

 

We have a diagnosis for my daughter and would just be interested in learning more and making sure we are doing everything we should as far as her healing goes and other possible food sensitivities.  My son (3) has positive blood work, but negative biopsy, so we'd be interested in if we should persue a diagnosis for him.  And we'd love to discuss what to do about our baby and possible gluten challenge in the future to see if she has celiac too. 

 

 

Thanks!

[mamaw]

You should check with your insurance carrier first. They may not cover if the provider is out of your coverage. You then would have to pay out of pocket....

It does take time for a body to adjust & make changes to a diet change.. Some it is a quick turnover for others it can take several years....

Other food sensitivities can take place at anytime, even years later... this process is usually a personal process meaning not everyone develops other problems... Some are just celiac while others go on to develop other autoimmune disorders or food allergies.

While the body is mending some doctors also recommend going dairy free for a period of time. That is because dairy is also broken down at the tips of the villi same as gluten...this is relatively a new approach in the last few years...

Some parents would just go gluten-free for the family since daughter is celiac, son has positive Blood work but that is a choice each parent needs to decide for their children... Some people need that golden seal stamp of positive to be able to follow through .... no right or wrong here....

[mamaw]

Okay  I just  seen Scott( Admin)  has posted  links   to  discovering  celiac  disease  &  the last  one  is  by a  Philly  doctor  ( Dr. Verma) ...  She  states  about  testing  for  an infant.... you  can read  that.... not  a lot of  help  but  what  studies  have  found.....

[StephanieL]

Celiac is pretty cut and dry.  You remove gluten and your remove the disease process. Unless you are having ongoing issues, if it's a new dx, I wouldn't bother with more.  Perhaps a nutritionist but even that is pretty hit or miss if there is a good one.  We've never found one.

 

As for what to do about testing younger kids, they say when you start them on gluten doesn't push them to have it or not.  We have chosen to have a gluten-free home for the most part (my oldest is the one dx).  We gave my middle gluten to be sure she didn't have a problem then had her consume it daily at preschool once she started.  We tested her then after she was on it for several months.  Now that I pack all food and snacks, she only gets gluten when we are out. The baby still hasn't had gluten and we will likely follow the same protocol for him.  

 

As for your second kiddo having positive bloodwork, when we had that happen we were given the option to scope every 6 months or have him go gluten-free and test his blood to see if the levels came down.  Again, each family has to do what they need but that's what we were told by A#1 top Celiac guy in the US.   

 

Also, if you want them to consider what to do for the older two, I would think you would need 2 apps for them. You could ask about the baby perhaps but if you have blood work and biopsies to go over then you would need appts for the older two.