Obtaining Medical Records

As I said in the last post.  There was an error in my medical records, one I would have caught had I obtained a copy of my medical records instead of trusting that everything was where it should be.  This is a lesson to each of us.  Make sure that you get a copy of your medical records when you have a major diagnosis happen.  This way you have a copy for yourself as well as proof should you ever need to move to a new doctor.  While a new doctor can get your medical records it does take time.

Post Diagnosis Followups for Celiac

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Well it has been over two years since my Celiac Diagnosis and that means that I get to go in for a whole battery of follow up tests including the dreaded Endoscopy.  Those that think that the testing is over once Celiac is confirmed are going to be very unhappy with this post.  

At about two years after the initial diagnosis and Endo, the doctors will need to see how well you are doing and how much healing has occurred.  I already know that my IgA numbers are up to 70, this is a significant leap from the 40's that they were prior to being gluten free.  However, I will get to start the whole battery of tests over again.  This is to see if there is a marked improvement not only in how I feel, but how my body really is.  Coming on the 29th, I will be scheduling my second Endoscopy since this all started.  I am not looking forward to this one.  The last time they used the wrong gas and I was bloated and had issues for an extra day.  I am really hoping that doesn't happen again.  

Other then another Endoscopy, I will be undergoing a battery of blood tests and another 24 hour urine test.  Oh Joy!  Now, what follow up tests are going to change depending on the Doctors.  I will also be doing a bone density test to see how far I have to go in the healing process.  

The reasons for each of these tests are to see how well your body is responding to the Gluten Free Diet.  Some people are two years out and only need the occasional check up after that.  Others may not be responding as well as the doctors had hoped.  While the person may be feeling better, they are not healing correctly.  These tests will determine how well you are healing and how far you still have to go.  They also may show that there are more issues than the initial celiac diagnosis.  

If your doctor does not have a follow up schedule for you, then I highly recommend that you talk to them about it.  Follow up testing can start as early as 6 months from the start of the gluten free diet.  The sooner you know if there are more issues, the sooner you can start fixing things.  

Atypical Celiac

Atypical Celiac may show its self in a very non classical celiac way, meaning that you may not have issues with the intestines.  The signs and symptoms are often misdiagnosed as another disorder.  However, the symptoms will persist or worsen until the patent is placed on a gluten free diet.  Please note that almost all of these symptoms are chronic or severe and should not be confused with regular issues.  

The Flipside of Celiac - A spouses perspective

I am sorry I have been flaky this week; I have had a lot of special posts that take a lot of time and research.  This is another special post.  My husband and the whole family has put up with so much this past five years and they have had to change their lives a lot.  Since everyone always talks about what it is like to have to live a gluten free lifestyle, but no one ever talks about what it is like to live with someone who has celiac, my husband wrote a post.  Celiac from my family’s perspective, what it is like to live with someone with celiac and what he has had to give up.  Without anymore preamble here is his post.  

Newly Diagnosed with Celiac? What is next?

(Flashback post)

What do I do now? This is a question I have helped a few people with.  What are you supposed to do when the blood tests come back as having Celiac, gluten sensitivity or gluten intolerance?  What steps should you be taking?

My blood tests came back as Celiac now what?

What do I do now is a question I have helped a few people with.  What are you supposed to do when the blood tests come back as having Celiac, what steps should you be taking?

This strongly depends on your doctor.  If you have a doctor that is going to want more tests then it is not yet time for you to onto a gluten free diet.  All of the tests that the doctor is going to give you requires that eat a normal gluten filled diet for at least two weeks, however most prefer a month.  Find out if your doctor is going to want more testing before you start your diet. Some of the testing a doctor might do is an internal biopsy of your intestinal lining. 

Once all the testing is done then it is time to start at least two weeks of a completely gluten free diet.  This can be really hard since your body can be addicted to Gluten.  I know at one point I honestly thought about stealing some child’s cookie because it looked so good.  I still have cravings after more than a year of being off of gluten.

Until you know what you can in and cannot handle in the food department try sticking to unprocessed meats, normal hard cheeses (if you can tolerate milk) fresh fruit and vegetables, and basic unprocessed potatoes.  I know how exciting this diet sounds; however, you have to give yourself time to heal. 

While you are learning about your tolerances it is highly important that you keep a good vitamin and mineral level.  This can be hard since you are now cutting a LOT of food from your diet.   I suggest having a strong diet of fresh fruit and vegetables for a while in order to make up everything you need until you get a good handle on your nutritional needs.

Find your tolerance, this means finding exactly what you react too.  Personally I do not react to Oats or Corn.  I have the immune deficiency version of Celiac and so my tolerances are different than others.  However, some people will react to different items.  Try items one at a time and see what you react too.  This will be time consuming and annoying.  However, it will be helpful when you are trying to heal.

If you have severe Celiac then it is time to go cleaning out your kitchen as well as deep cleaning what you can in the way of cooking implements, if you can't get it completely clean then you may need to get rid of it.  If others in your house eat normally they need to switch their diets as well while they are in the house. 


Items that are going to have to be replaced:

The first thing that has to go is the toaster.  Unless you can get tiny bit of gluten out of it, the toaster is going to make you sick.  Once you find a gluten free bread alternative that you enjoy you are going to want to toast it (they taste better that way) and it cannot be done in the old toaster.

Depending on what you used your cast iron cooking for it may need to go.  If you cooked gluten containing meals in cast iron it is now into the metal.  

Wooden cooking tools, IE cutting boards, spoons, and rolling pins, these need to go away for the same reason as the cast iron cookware.

For those who are really sensitive then you might want to check out ask.com and their list
http://celiacdisease.about.com/od/settingupthekitchen/tp/Gluten-Free-Cookware-Utensils.htm