New to this Diagnosis

[C Anderson]

I am new to this diagnosis of Celiac Disease. I just underwent an endoscopy confirming the disease. I am 64 1/2 years of age and all my life I have eaten all the things I guess I should have. How in the world do I begin this journey?  

 

I feel so so sick and oh so tired, then I read it can take up to 20 months to feel any relief.  Oh this journey seems too rough. 

[Fenrir]

Don't worry, 20 months isn't typical. 

Most people get some relief within a month or so. 

For me, I was significantly better a month later but took 6 months to be mostly symptom free. 

[GFinDC]

Hi C Anderson,

Don't worry, the gluten-free diet seems hard at first but over time it becomes 2nd nature.  We all heal at different rates depending on many factors.  Being completely better may take quite a while yes, but that doesn't mean you won't be feeling better than you are now.

Here are some steps that may help you get to feeling better soon.

1 Stop eating all dairy.  Many of us can't digest dairy for several months after going gluten-free.   But some get the ability to digest dairy back after healing.  Oats are another possible problem food.  Some of us can't eat them.  So cut them out and try adding them back when you are feeling better.

2 Stop eating all processed foods.   Instead eat whole foods like meats, veggies, nuts, eggs, and fruit.

3 Cook all your own food at home if possible and don't eat out.  Eating out is possible but you should wait 6 months or so.

4 Ask your doctor to test your vitamin and mineral levels.  Celiac can cause malabsorption of nutrients so you may need to take supplements for a while.

5 Try to avoid sugar and carbs for a few months.   With a damaged gut bacteria can multiply quickly and cause gas and discomfort after eating sugar and carbs.

6 Stock up on peppermint tea, Pepto Bismol, aspirin, and Milk of Magnesia.  They can all be handy at times.  Peppermint tea helps to relax gut muscles and get gas out of the stomach.

You may find pro-biotics and digestive enzymes helpful.  There are dairy-free coconut milk yogurts available now.  There's also coconut and almond milk ice cream too.  There is often a gluten-free section in grocery stores now.  Foods are often marked "gluten-free" but some foods ere not marked even though they are gluten-free.  Whole foods like plain meats, veggies, nuts, eggs etc do not need to be marked but are naturally gluten-free.

Gluten that affects celiac is any food with wheat, rye or barley in it.  Again, oats may be a problem for some.

Edited February 4, 2020 by GFinDC

[cyclinglady]

You can do this!  Soon you will feel normal again!  

You have been given excellent advice.  I was diagnosed at 51 and was pretty shocked like you.  Anemia was my only symptom, but later I realized that many body systems had been impacted.  I just chocked it up to aging.  

This forum has plenty of members who are willing to help you.     If you are lucky, your GI might recommend a dietician who really knows celiac disease.  Make sure you get follow-up care from your GI or PCP.  This explains it well.  

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

[C Anderson]

16 hours ago, Fenrir said:

Don't worry, 20 months isn't typical. 

Most people get some relief within a month or so. 

For me, I was significantly better a month later but took 6 months to be mostly symptom free. 

 

16 hours ago, Fenrir said:

Don't worry, 20 months isn't typical. 

Most people get some relief within a month or so. 

For me, I was significantly better a month later but took 6 months to be mostly symptom free. 

I Just honestly do not even know where to begin except cutting out the flour and pasta. 

[Fenrir]

19 minutes ago, C Anderson said:

 

I Just honestly do not even know where to begin except cutting out the flour and pasta. 

Best thing to do until you learn what is and isn't gluten-free is to go to a meat, fruit, and veggie diet and add in foods listed as certified gluten-free. If you are eating mostly meat, fruit, veggies and only things labeled gluten-free you should be fine. Just plain meat and veggies seasoned but no sauces or breading. That's the easy gluten-free diet that will get you through the initial stage of learning. 

[cyclinglady]

Start in your own kitchen.  Do you live with anyone else?  If so, call a meeting.  Explain that you need to be kept safe and everyone is going to have to learn some new kitchen practices like not sharing a colander or toaster (those things are too hard to clean).  Or be like me, and toss or give away all things that have gluten in your home.  

Wait, why reinvent the wheel?  Here is a place to start:

Do you have a library nearby?  Check out some celiac disease books.  If you need some recommendations, let me know.  I can refer you to some I have that are really good,  so you do not waste your money if you buy a book online.  

You can do this.  I can not tell you how good it feels to feel well.  You too can get there.  You are just in shock and you are sick.  You are also experiencing grief.  All that is normal.  We have all been there.  

I felt better within weeks.  My anemia resolved fast.  But it took me a year to really 100% well.  But that is 100% and that is subject to individual interpretation.      I bet you will be super happy to feel 50% better at this point.  Do not let statistics get you down.  Every celiac is different with different circumstances.  

Questions?  Keep them coming!  

Edited February 4, 2020 by cyclinglady
Dang that auto-correct feature!

[RMJ]

3 hours ago, C Anderson said:

 

I Just honestly do not even know where to begin except cutting out the flour and pasta. 

Eating meat, fruits and veggies is good, as suggested above.  If you’re eating any packaged foods, begin by reading the labels.  Search for those that say gluten free.  That’s the safest.  If you eat something that doesn’t say gluten free read the ingredients and look for the words wheat, rye, or barley and avoid those.  

Eating at restaurants isn’t a good idea at first, unless you’re lucky enough to have one in your area that is completely gluten free.

[C Anderson]

3 hours ago, cyclinglady said:

Start in your own kitchen.  Do you live with anyone else?  If so, call a meeting.  Explain that you need to be kept safe and everyone is going to have to learn some new kitchen practices like not sharing a colander or toaster (those things are too hard to clean).  Or be like me, and toss or give away all things that have clutter in your home.  

Wait, why reinvent the wheel?  Here is a place to start:

Do you have a library nearby?  Check out some celiac disease books.  If you need some recommendations, let me know.  I can refer you to some I have so you do not waste your money if you buy a book online.  

You can do this.  I can not tell you how good it feels to feel well.  You too can get there.  You are just in shock and you are sick.  You are also experiencing grief.  All that is normal.  We have all been there.  

I felt better within weeks.  My anemia resolved fast.  But it took me a year to really 100% well.  But that is 100% and that is subject to individual interpretation.      I bet you will be super happy to feel 50% better at this point.  Do not let statistics get you down.  Every celiac is different with different circumstances.  

Questions?  Keep them coming!  

Thank you so much. I am in a grieving process right now. I just live by myself but I am. just so overwhelmed because I have lived my life on Pasta’s and bread. 

[Fenrir]

12 minutes ago, C Anderson said:

Thank you so much. I am in a grieving process right now. I just live by myself but I am. just so overwhelmed because I have lived my life on Pasta’s and bread. 

I hear ya on that, I'm Italian and love my bread and pasta. 

The good news is that there are good gluten-free pastas. Barilla makes really good gluten-free pasta, just make sure it's the one labeled gluten-free. 

[cyclinglady]

I get it.  While not a pasta girl, I was a baker.  An excellent baker.  Like the kind that made all my bread from scratch, even my hamburger buns.  Wait a minute.  I am still an excellent baker.  With time, the gluten free version of bread and pasta will seem very tasty.  You will forget wheat flour bread.  Honestly.  

I just made a batch of Toll-House cookies.  My non-celiac kid took a bunch back to her dorm.  The girls think they are great.  It is probably just that any homemade is better than store bought.  Definitely better than the dorm cookies!  

Living by yourself will make it easier.  Just give away or toss that food.  It will prevent you from consuming gluten when you are down.  And you will feel down because you are indeed grieving.  But it gets better!  Promise!