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Newly Diagnosed And Having A Really Hard Time With The Idea Of "never" And "forever"

Rachel-Austin88

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Rachel-Austin88 Newbie
Rachel-Austin88
Posted

Hi, my name is Rachel, im 25 and I was just diagnosed with Celiac on Friday. When she called me into her office to give me my blood test results i knew that something was wrong. I guess i will start with some back ground first. I have always had stomach problems my whole life but i always just dealt with it. I had my gall bladder removed at 17 and i have my first child at 18. And the stomach pain, diarrhea ect just never got better. It always came in waves, then when away. I thought it was because i was lactose intolerant so i cut out dairy about 6 months ago but that didnt help either. For the past two months i have been constantly tired, even if i got 10-12 hours of sleep. and the worst part is in the past year i gains about 65 pounds. I knew this massive unexplained weight gain was unhealthy, but nothing would make me loose weight, i just gained. I believe that i developed a small case of depresson due to the weight gain and lack of motivation to do anything or go anywhere. Anyway, my entire eating habit has always revolved around pastas bread and baking. I love to cook. EVERYTHING. I know that i should look at this as a new opportunity to try and learn new things, but its hard for me. This weekend i have been living off of water and baked chicken and some rice and lettuce. I dont know where to start with thinking about grocery shopping, i dont know what is and isnt safe to eat. i know that i need to be suspicious of eating out anywhere, but im basically suspicious of eating anything i make also. i dont know what spices are safe, i dont know what foods are safe, i dont know where hidden gluten is. Im starting to feel a little better, (the stomach cramping is gone but im still totally exhausted) and i dont want to accidentally eat something. ANY help or guidance, tips on where to start, anything i would really appreciate. Thank you!!  

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kareng Grand Master
kareng
Posted

Here is a good place to start:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

This notion of hidden gluten is fueled by Internet rumors. In the US & Canada, wheat must be clearly labelled in the ingredients.

You don't have to be perfect the first few days. It can take a few months to figure it all out. Is your doctor sending you to a GI doc for an endoscopy? If so, don't stop eating gluten until after the procedure.

notme Experienced
notme
Posted

welcome to the best club you never wanted to join  :/

 

you said it yourself, foodie :)  it *is* a good opportunity to learn new things to cook.  i felt the same way:  i was always looking for new restaurants/ new recipes/ things to make.  i had just gotten pretty good at making 'gluten' bread and i was pretty proud of myself, then, BOOM that was the end of that!  it takes some getting used to, but trust me, once you get the hang of it, cooking and eating will be second nature.  like a "new" normal.  plus, you will feel so much better soon you will never want to feel bad again.  i know, the always and forever sure suck, but now you will have more and better forever.  good luck and ask questions.  mostly everybody around here is pretty helpful.

 

ps - check the cooking/baking board 'what's for dinner' chat.  pretty good dinner ideas/free entertainment lolz

Rachel-Austin88 Newbie
Rachel-Austin88
Posted
  • Author

Here is a good place to start:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

This notion of hidden gluten is fueled by Internet rumors. In the US & Canada, wheat must be clearly labelled in the ingredients.

You don't have to be perfect the first few days. It can take a few months to figure it all out. Is your doctor sending you to a GI doc for an endoscopy? If so, don't stop eating gluten until after the procedure.

My pcp said my blood test were off the chart on 4 of the ways they tested so she said that there is no need to send me to a GI, that she has no doubts or second thoughts about positively diagnosing me with celiac. The frustrating part is she didnt really tell me to go from here, she just told me that i need to stay away from gluten. 

cyclinglady Grand Master
cyclinglady
Posted

My pcp said my blood test were off the chart on 4 of the ways they tested so she said that there is no need to send me to a GI, that she has no doubts or second thoughts about positively diagnosing me with celiac. The frustrating part is she didnt really tell me to go from here, she just told me that i need to stay away from gluten. 

Welcome.  Believe me, this is the best site for support.  I've been glued to it for the past few weeks, gleaning information and helping others (which really helps me!)   Continue to read up the "101" posting Kareng recommended.   You don't have to live on chicken, rice and lettuce!  Just focus on whole foods.  I made tri-tip (seasoned just with salt and pepper since I'm allergic to garlic), sweet potatoes, green beans and a nice salad.  Dressing was olive oil and balsamic vinegar.  Had strawberries for dessert and then some peanut butter cookies that I made.  I bake all my gluten-free items and it's easy since I've been making gluten-free food for my hubby for the past 12 years.  You just need to get over the shock and take a little time to grieve, but it it won't last long because you'll start to feel better and it's so worth it!  

GFinDC Veteran
GFinDC
Posted

..she just told me that i need to stay away from gluten. 

 

No problem, just cross to sidewalk on the opposite side of the street when you see gluten coming! :)

 

Many doctors are pretty clueless when it comes to nutrition issues and especially eating gluten-free for a celiac.  If you went to a celiac center you'd probably get better advice and be referred to a nutritionist.  Unfortunately many nutritionists are not up to speed on gluten-free eating either, unless they work with celiacs regularly, like at a celiac center.

 

You need to avoid consuming an wheat, rye, barley and oats for at least few months.  Some people recommend avoiding oats for 6 months to a year.  There are about 10 percent of celiacs who also react to oats, and most oats are cross-contaminated (cc).  The easy and simple way to avoid the things you need to avoid is to cook whole foods from scratch.  Take food with you when you go out, fruit or nuts etc, or  a cooler.  After a while you will learn how to deal with eating gluten-free and what works for your body.  All of us are a little bit individual when it comes to what works for us.  The first months are often kind of rough as your body is healing and adjusting to not having villi damage and gluten.

 

Unexplained weight gain can be a symptom of thyroid issues, (hypothyroidism).  Thyroid issues and celiac often go together.  There is also another auto-immune disease called Hashimoto's Thyroiditis that causes damage to the thyroid.  If you have throat swelling and or pain it may be that.  Your doctor can test for it by looking for elevated TPO antibodies.

 

Gall bladder issues are also somewhat common with celiac disease.

 

If you are busy, then cooking a lot of food on the weekend is a good idea. Freeze some and eat it during the week.  Don't forget to check vitamin pills for gluten-free status, and meds.

 

Many grocery stores have a gluten-free section these days or the mark gluten-free items with a special tag, often green.  gluten-free breads / baked items are often kept in a freezer section.  There are celiac support groups in many areas.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?

https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

What Did You Have For Lunch Today?

https://www.celiac.com/forums/topic/87765-what-did-you-have-for-lunch-today/

What's for dinner tonight chat?

https://www.celiac.com/forums/topic/75238-what-are-you-cooking-tonight/

Dessert thread

https://www.celiac.com/forums/topic/93840-whats-for-dessert-tonight/page__pid__802399#entry802399

Easy yummy bread in minutes

https://www.celiac.com/forums/topic/56641-easy-yummy-bread-in-minutes/

Gemini Experienced
Gemini
Posted

Please go and buy this book to read.......Open Original Shared Link  It is important that you learn the diet correctly and learn about the disease itself.  Only then will you realize that it's not the end of the world and there is plenty for you to eat.  But this book earned high marks from many actual celiacs so it's worth it.  Doctors know nothing about nutrition or the gluten-free diet so there is a certain amount of learning you need to do on your own.  We are always here to answer questions too.  :)

 

Everyone has given good advice but I disagree with some minor details....I had no villi left when diagnosed.  My gut was completely trashed. I did eat some processed, gluten-free foods and did fine with them.  Try to stick with dedicated facilites, if you can but if you are craving a cookie or a brownie, your healing will not be set back if you eat some.  I don't even think you need to avoid dairy at first, just gluten.  Many people can tolerate dairy just fine, others cannot.  I think it best to isolate one food group at a time, unless your symptoms persist for too long.  I did fine for 2 years after going gluten-free and then realized I had a problem with dairy, on return of symptoms.  I can tolerate small amounts but not a lot.  If you take away too much food from people when it may not be necessary, then they will resent the diet and be angry.  People are different and what some cannot tolerate, may not be the same for everyone.  You are already having trouble adjusting a bit, which happens to many, and I don't want to see you go off the deep end here!  You love to cook...that is half the battle with Celiac.  Knowing that, with time and learning, you will be eating awesome food in no time.  We can also help you with cravings and what the best gluten-free products are available.  There is some excellent bread out there and making your own is very do-able!

 

Hang in there!  

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