Quick Question - I have been scoped...

[zigybean]

So on a recent colonoscopy, they also scoped the upper GI track.  The Dr. did a biopsy of my duodenum and the results came back "consistent with the results" of a diagnosis of Celiac disease.  Now he is wanting me to take a blood test.  I am a bit confused.  If, from what I have read, the biopsy is the gold standard for diagnosis; then is it still possible I do not have this condition?  Second, I am 51 years old.  Is this something that you can be a new condition or is it more likely this has just gone undiagnosed since childhood?  I appreciate any responses.  Google is my friend, but it is surprisingly not very helpful on these two questions...

They did draw blood yesterday, so I guess I will know what the Dr. thinks within a week or so...

 

[zigybean]

Thanks if you read it, but I have my answer.   The bllod test was positive.  I guess I can stop being in denial.

I really feel the urge to say bad words.

 

[cyclinglady]

Well, sometimes celiac disease is caught when the GI is in the intestines trying to determine a diagnosis.  The problem is that several things can cause villi damage like NSAIDs (e.g. ibuprofen), allergies, etc.  The blood test confirms the celiac disease diagnosis as it measures antibodies.  

Celiac disease can develop at any time in your life.  

I am sorry that you received a celiac disease diagnosis.  I can totally relate to your shock.  I was 51 when I was I was diagnosed too.  I just went in for a routine colonoscopy to screen for cancer.  My GI ordered a celiac panel and then when positive scoped me from both ends.  I did not have any noticeable GI symptoms, but did have severe anemia which had always been blamed on a genetic anemia I have or just being a women (menstruation).  

The forum does not allow for cursing, but you can rant all you want.  Expect to go through a grieving process.  When you feel up to it, start the gluten free diet.  You will be amazed how much better you feel.  Things you attributed to aging will dissipate.  

I have been gluten free for over five years and it just becomes second nature.  

Your best defense is to educate yourself.  Or you can be like the two other patients my GP sees who have celiac disease and are always sick.  I can not imagine choosing to do this at all.  

[healthysquirrel]

Good to know that we can't swear here, sorry about your diagnosis zigybean we're here for you if you have any questions. I am still a relative newbie, but there are some very kind and knowledgable people here. Sending warm thoughts.

[GFinDC]

4 hours ago, cyclinglady said:

The forum does not allow for cursing, but you can rant all you want.    

Oh fudgesickles!  Chuck that!

@zigybean  Celiac can be triggered at any point in life.  If your immune system learns to attack the gluten in your diet and your small intestine lining, then you have celiac disease.  Your immune system is always detecting invading microbes and and such, and learning to fight them.  That's how we get celiac disease.  Somehow the immune system gets confused around gluten and attacks our gut lining as well.  About 30% of people in the USA carry one of the genes for celiac disease, but only 1 to 3% are actually triggered to become celiac.  Celiac is an auto-immune condition.  Congratulations, you now have an incurable AI disease/condition!

But it's not all upside down smiles.  Celiac is the only AI condition where we know the trigger (gluten) and so we can control (and curse) the reaction.  All it takes is radically changing our diets for the rest of our lives.

Fudge marshmallows!

[zigybean]

Thanks for the replies.  When he first mentioned it as a possibility, it was like an A-HA moment.  Is it possible I have had this undetected for years?  It would explain so much.

@GFinDC  Unfortunately this is not my first rodeo with AI conditions.  I have been type1 diabetic since the tender age of 15.  I will figure out how to cope soon, but I am still not quite ready to go there yet.  I am still a bit in shock.  Hitting the basic foods until i can get a plan together for the rest.

[tessa25]

I don't know what the rules are for diabetes. So my food suggestions could be useless, but here goes.

Here's what I found out regarding gluten-free food equivalents:

Note: insert the words "gluten free" in every item mentioned as some of the companies also sell non gluten free stuff. It's tedious to write that phrase all the time.

Get a chest freezer to store all of your frozen gluten-free foods. Makes things easier.

Bread:
  - Canyon bakehouse without question is the most realistic tasting bread. They have white, fake rye, multigrain and bagels (the bagels are fantastic).
  - Schar baguettes are decent.
  - Katz makes an English muffin that, after toasted, reminds me of a real one provided it has stuff on it like butter. I think that's the brand.
  - Etalia has a good boule if you prefer artisan bread. (Colorado)

Pizza crust:
    - Schar makes a good thick and chewy crust.
    - Udis makes a good thin and crispy crust.
    - Etalia makes a great New York crust. (Colorado)

Pasta:
    - Barilla makes the best pasta. Tastes like normal pasta. Spaghetti cooks the best.
    
Flour:
    - Pamelas all-purpose flour is great for making gravy and batter for fried foods.

Cereal:
    - Envirokidz Gorilla Munch cereal is a yummy equivalent to corn Pops.

Cookies:
    - Goodie Girl mint slims - fantastic girl scout mint cookie equivalent
    - Glutino and MiDel make a decent Oreo equivalent.
    - Kinnikinnik makes a good nilla wafer
    - Mi Del makes a great ginger snap.

Cake:
    - Betty Crocker chocolate cake mix tastes the same, but you have to get the cooking time exactly right. It is a very small window of time. Too long and it's too dry.
    - Udi's blueberry muffins after 8 seconds in the microwave are addicting
    - Katz chocolate donut holes are fabulous

Frozen meals:
    - Udi's Chicken Florentine is addictive and Broccoli Kale lasagna is a good white lasagna.

Restaurants (not from personal experience, just from research)
    - Chinese – PF Changs. Employees are supposedly trained in gluten free.
    - Burgers – In N Out. The only thing here that is not gluten free are the buns so it is very easy for them to do gluten free. They are also trained in it. They are only out west. Road Trip!
    - Outback steakhouse. Employees are supposedly trained in gluten free. How good they are depends on where you live.

 

 

[GFinDC]

13 hours ago, zigybean said:

Thanks for the replies.  When he first mentioned it as a possibility, it was like an A-HA moment.  Is it possible I have had this undetected for years?  It would explain so much.

@GFinDC  Unfortunately this is not my first rodeo with AI conditions.  I have been type1 diabetic since the tender age of 15.  I will figure out how to cope soon, but I am still not quite ready to go there yet.  I am still a bit in shock.  Hitting the basic foods until i can get a plan together for the rest.

Hi zigybean,

Type 1 diabetes is one of the conditions associated with celiac disease.  Thyroid disorders are another one.  But any other AI condition is a possibility.

It's not a bad idea to stick with a low carb, meat and veggies diet for a while.  Skip the gluten-free baked goods and such and instead eat foods you cook yourself at home.  Many people find avoiding dairy for a few months is also helpful.

It's not a bad diet once you get used to it.  But like any change it can take time to adapt.

https://www.cureceliacdisease.org/faq/what-other-autoimmune-disorders-are-typically-associated-with-those-who-have-celiac-disease/

[cyclinglady]

On 12/12/2018 at 7:34 AM, zigybean said:

Thanks for the replies.  When he first mentioned it as a possibility, it was like an A-HA moment.  Is it possible I have had this undetected for years?  It would explain so much.

@GFinDC  Unfortunately this is not my first rodeo with AI conditions.  I have been type1 diabetic since the tender age of 15.  I will figure out how to cope soon, but I am still not quite ready to go there yet.  I am still a bit in shock.  Hitting the basic foods until i can get a plan together for the rest.

Please tell your endo to consider screening his/her  TD1 patients for celiac disease, especially if they have GI issues or anemia.  You many help someone else!  

https://www.glutenfreeliving.com/gluten-free/celiac-disease/celiac-disease-and-diabetes/