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Today My Life Changed Forever


Phoenix-Sweetheart

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Phoenix-Sweetheart Newbie

Today I got "the call" from my GI doctor which confirmed my theory that I have celiac disease. From what I understand, it is more common in woman than in men. Also, it is not uncommon for the symptoms to occur later on in life. I'm 24 and after living a life of extreme discomfort after eating nearly anything I put in my mouth, I am kinda relieved that I have finally found out what was wrong with me. Today is Day 1 of being gluten free. I have done a lot of research online and honestly I am very overwhelmed. Does anyone have any advise for someone who is just starting out in there "new way of life?" Any advise would be greatly appreciated. 


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kareng Grand Master

Welcome to the club. Your secret decoder ring will be shipped in 2- 8 weeks.

Read the Newbie thread.

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

Gemini Experienced

Welcome to the club. Your secret decoder ring will be shipped in 2- 8 weeks.

Read the Newbie thread.

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

 

:lol:  :lol:  :lol:   I'm sorry, I am not laughing at the OP's anxiety over this but the decoder ring line just did me in!

 

Phoenix......yes, read the newbie thread and if you have questions, ask away.  Relax, it isn't bad at all and food will become happy for you again as you won't be sick anymore.  It does take a little while but you will feel better.  There is a learning curve but everything can be mastered well. We'll help with food cravings and replacements...there are a lot of them out there.  :D

psawyer Proficient

From what I understand, it is more common in woman than in men.

I can't let that go by without a comment. I don't think it is more common in women, but I definitely agree that it is more commonly diagnosed in women, for two reasons.

Men are less likely to go see a doctor about abdominal issues--gas and the runs just happen, don't they? And if they do go to a doctor, they are more likely to accept the IBS brush off--rather than persisting and insisting on a real answer.

gatita Enthusiast

Hello, and welcome! :)

 

I do have advice... First of all, don't do what I did. When I started to realize that gluten was a problem, I treated it like counting calories or carbs from my dieting days -- ie. thinking that "ballparking" it was good enough. That a little crumb wouldn't hurt me. How wrong I was!

 

I had to learn the hard way that I have to be super vigilant about keeping even a tiny amount of gluten out of my diet and my mouth.

 

That meant reading every single label ALL THE TIME, avoiding eating out until I knew a place was safe, and a few other strict measures... such as getting rid of the strainers I used to rinse pasta in.

 

But now for the good news -- once those details were taken care of, the rest has become second nature.

 

Once you start to feel better, you won't ever look back!

 

So... definitely click that link that kareng posted. You will get the hang of it and feeling better is going to be its own reward.

GFinDC Veteran

Hi PhoenixSweetie,

 

Here are some tips for the first 6 months.  There are just a few threads on what to eat floating around.  The topic hardly ever comes up for some reason... :)  I'll post a couple for you to get some ideas.

 

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.

Buy a nun's habit.

 

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/

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes
https://www.celiac.com/forums/topic/97786-thread-for-gluten-free-dairy-soy-corn-and-nightshade-free-recipes/

Super Easy Meal Ideas Anyone?
https://www.celiac.com/forums/topic/97027-super-easy-meal-ideas-anyone/
 

 

nvsmom Community Regular

Welcome to the board.

 

I only have a couple of things to add to the good advice already given. First, hang in there for those first few weeks during which time some people go through a withdrawl. Some people feel a bit worse before they feel better so if it happens to you, wait it out and it will pass.

 

Second, when you go back to the doctor for nutrient testing (many celiacs are low in calcium, iron/ferritin, D, B12 and potassium) check you thyroid too. Hypothyroidism is liked to celiac disease; I believe just over 1 out of every 10 celiacs have hashimoto's.

 

Best wishes! I hope you feel well soon.


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  • 3 weeks later...
running like a zombie Newbie

Whatever you do don't walk down the bread aisle as I did....I felt by the time I reached the end I needed antidepressants. Also make sure family knows the situation, it makes it easier around holidays when those evil gluttened foods are involved.

mommida Enthusiast

It is said that autoimmune disease symptoms are excerbated by female hormones. 

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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