Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Just Diagnosed


njakgirl

Recommended Posts

njakgirl Newbie

I'm 24 and was just diagnosed with Celiac Disease. It came as a HUGE shock to me. First of all I'm Italian and I've been eating pasta WITH WHEAT my entire life. I just recently (in the last few months) have had really bad stomach aches. They kept saying it was stress and anxiety and stuff like that and I kept telling them I know what that feels like and it's not this. After a few months they did tests and it came out that I do. When I was younger they kept telling me I had Mediterranean anemia (also a stupid Italian thing, no offense) and I guess now that they just used to misdiagnose me with that. My world has been turned UPSIDE DOWN. I have no idea what I can and can't eat, I don't know where to shop for food and I am so not a cook. Anything anyone can tell me to help would be GREAT. No one understands. They just keep saying it could be worse it could be worse but this IS worse for me.

On top of all this I've never been the "diet" person. I've never had to be. I've always just handled EVERYTHING I eat and my weight always remained between 115 - 118. That was until I had my son and looking back at it now and reading what I read I guess the reason I was so white, pale, out of energy, and couldn't move is cause he wasn't getting what he needed. Thank god he was ok. After that i remained like 135 and now not only do I have to go on a "diet" I have to go on a very VERY strict diet.

I am not a good cook and i live on pasta and i mean LIVE on it. I eat it like five times a day. My stupid boyfriend keeps telling me it's all in my head, it's all in my head. I tell them if he felt the PAIN that I feel EVERYDAY for the last three months than he would understand.

On top of all this I'm being treated for anxiety, BAD migraines, and depression. Will it never end? I'm way to young to have ALL these problems and all ANYONE keeps saying is YOU'LL BE FINE. I swear if I hear one more person say that i'll be FINE i'm going to have a heart attack.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



LDJofDenver Apprentice

It will end, and things will get better - - WAY better.

Most of us have a history like yours with years (sometimes decades!) of misdiagnosis. I was being treated for each individual symptom (a pill for this, a pill for that, an ointment for the skin, etc) - I got the migraines, too. I feel your pain! But now you know, and now it will begin to change.

It can be a little overwhelming at first. We

no-more-muffins Apprentice

The gluten free diet is a HUGE change! We all understand how hard it is. I have been doing it for 4 weeks and it is definitely getting easier. I'd say that you should eat 1 day at a time and try not to worry about the long haul.

My depression and anxiety has been getting better and better since I started eating gluten-free. At first I noticed more anxiety but I believe it was caused by gluten withdrawal. Our bodies react to gluten in the same way that it reacts so some opiates so when you stop eating it you may feel a bit worse at first.

Today I feel the BEST I have in 6 months. I have energy. I feel happy. I am not anxious. It WILL take time, and it WILL take work, but it will get better. And I am not going to tell you that it isn't a big deal, because it IS a big deal. A HUGE deal. You just have to focus on the things that you CAN eat.

Do you have a local health food store? Do they sell gluten-free pasta at any of the chain grocery stores near you?

If you need someone to talk to feel free to PM me. I know how overwhelming it is at first. And you may just find that cooking isn't so bad. I can promise you that if you are willing to cook for yourself you will spend WAY less money, you will be healthier and you will have so many more food options. It will take awhile to learn but you can do it.

We are a shared household and I use regular dishes. I just make sure they are cleaned in the dishwasher. I do very thoroughly wash all my pans and utensils and I have my own toaster oven that is gluten-free only. If you keep things clean you don't have to buy a whole set of special dishes for yourself. But you do have to be very careful and very clean.

The people on these forums are very experienced and helpful. Ask all the questions you have and come here when you are feeling down and frustrated.

Googles Community Regular

Hi,

I am going through the same thing you are. I was just recently diagnosed (three weeks) and in my twenties. I also survived on pasta and don't really cook. The shopping guides are a life saver. When I first got mine I went through and found all of the foods that I was used to buying so that I knew what I was used to eat that I could still have. (there was more than I thought). Don't be surprised if you don't like everything that is gluten free that you try. I had to get rid of two boxes of crackers after I got them because I thought they were awful. My suggestion is to find some basic food that you can eat and then build on that. Don't try to figure out every meal. I find that I am still eating the same food for breakfast and lunch each day since I came up with a basic lunch when I first started. Eventually I will probably start to change those around but it makes it easier when I am just trying to figure out what to have for dinner each night instead of each meal each day. Since you are finding that your boyfriend isn't supportive, you might want to ask around and find other supportive people. I have found a lot of people (many more than I expected) around even though they don't have celiac, know someone who has celiac or other issues with gluten or food allergies. You should also see if your area has a support group. I was excited to find that Rice Chex and Corn Chex had gone gluten free. I dont' know if you like them but they taste the exact same as before. (I have found they are a good fall back when I can't figure out anything else) Two other things that I have noticed is that I am hungry a lot of the time (so make sure you take food with you when you go places), and that I have been feeling tired (though that is going away). Know that these are not unusual. I was worried when they first happened, but people say it often happens. Take care.

Angels~Exist Newbie

I'm Italian too and you can still have your pasta! They make gluten-free macaroni, spaghetti, and even lasagna noodles. You can find them at health food stores or whole foods stores.

shendler Rookie

I'm 24 and I've been gluten free for 4 months about. I use to live on bread products. I could just eat bread with butter and be happy. I also never cooked and never had any desire to. Now I cut out all bread/pasta/baked goods from my diet. I have tried soo many gluten free varieties and they are just not for me and now I do not miss those products.

I also started cooking basic things. I hardly cook now. I eat a lot of fruit, salads, meat, frozen gluten free meals, cereals, chips. and more. It's hard to navigate at first what you can/cannot eat but it will get much easier with time.

njakgirl Newbie
I'm 24 and was just diagnosed with Celiac Disease. It came as a HUGE shock to me. First of all I'm Italian and I've been eating pasta WITH WHEAT my entire life. I just recently (in the last few months) have had really bad stomach aches. They kept saying it was stress and anxiety and stuff like that and I kept telling them I know what that feels like and it's not this. After a few months they did tests and it came out that I do. When I was younger they kept telling me I had Mediterranean anemia (also a stupid Italian thing, no offense) and I guess now that they just used to misdiagnose me with that. My world has been turned UPSIDE DOWN. I have no idea what I can and can't eat, I don't know where to shop for food and I am so not a cook. Anything anyone can tell me to help would be GREAT. No one understands. They just keep saying it could be worse it could be worse but this IS worse for me.

On top of all this I've never been the "diet" person. I've never had to be. I've always just handled EVERYTHING I eat and my weight always remained between 115 - 118. That was until I had my son and looking back at it now and reading what I read I guess the reason I was so white, pale, out of energy, and couldn't move is cause he wasn't getting what he needed. Thank god he was ok. After that i remained like 135 and now not only do I have to go on a "diet" I have to go on a very VERY strict diet.

I am not a good cook and i live on pasta and i mean LIVE on it. I eat it like five times a day. My stupid boyfriend keeps telling me it's all in my head, it's all in my head. I tell them if he felt the PAIN that I feel EVERYDAY for the last three months than he would understand.

On top of all this I'm being treated for anxiety, BAD migraines, and depression. Will it never end? I'm way to young to have ALL these problems and all ANYONE keeps saying is YOU'LL BE FINE. I swear if I hear one more person say that i'll be FINE i'm going to have a heart attack.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



njakgirl Newbie

THANK YOU TO EVERYONE THAT HAS REPLIED. It sure has given me a lot to think about. I've been doing this for well today is day two. I'm not a big breakfast person so that's one thing i don't have to worry about. Lunch, i bought a bunch of frozen things from the store. Dinner seems to well not exist at this point. I'm still trying to figure that one out. Guess this whole "very special strict diet thing" is good for losing weight *sigh*

ENF Enthusiast

Sounds like you're on the right track. By strictly following the diet, there is a very good chance that your digestive, depression and anxiety issues are going to be greatly relieved in the near future - you will probably be grateful that you were diagnosed when you start to feel better. Gluten to a celiac is similar to a dangerous drug - it's got a very strong addictive aspect, this is known, and does all kinds of physical and neurological damage as well. Your life will be so much better, that you will probably not give a second thought to the inconveniences that are part of the solution. This was the case for myself, and many others who have been there.

ravenwoodglass Mentor
THANK YOU TO EVERYONE THAT HAS REPLIED. It sure has given me a lot to think about. I've been doing this for well today is day two. I'm not a big breakfast person so that's one thing i don't have to worry about. Lunch, i bought a bunch of frozen things from the store. Dinner seems to well not exist at this point. I'm still trying to figure that one out. Guess this whole "very special strict diet thing" is good for losing weight *sigh*

It can be tough at first but you'll get the hang of it. Start out with whole foods, fresh meats and fresh single ingredient frozen fruits and veggies, rice, potatoes etc. The less processed stuff you eat at first the easier it will be.

I have a couple dinner suggestions that I use on the days that I really don't want to cook-

Baked Chicken (I just put olive oil or butter on it and a sprinkle of salt and toss it onto some foil and stick it in the oven with a potato that I pricked with a fork and pre cooked a bit by microwaving for a few minutes. At 375 it will be done in 1/2 hour or so and no pans to wash

A rice cooker can be great. You just toss rice in the bottom with some oil or butter and then throw some frozen veggies and perhaps some precooked meat in the basket. It cooks all by itself from there

Dinty Moore Beef Stew, the canned variety is also good, I throw some peas or green beans in as it cooks for a bit more nutrition

I will also often do a veggie stir fry and toss it with some Thai Kitchen Rice Noodles

Do you have a Wegmans near you? If you do they label all their gluten-free stuff with a circle G. If you have one near by they can be a big help. Walmart also labels their brand as gluten free and some other companies like Hormel will too.

TotalKnowledge Apprentice
THANK YOU TO EVERYONE THAT HAS REPLIED. It sure has given me a lot to think about. I've been doing this for well today is day two. I'm not a big breakfast person so that's one thing i don't have to worry about. Lunch, i bought a bunch of frozen things from the store. Dinner seems to well not exist at this point. I'm still trying to figure that one out. Guess this whole "very special strict diet thing" is good for losing weight *sigh*

Yes and no... a lot of the substitute foods are higher in calories, and you will start absorbing more of all the food that you eat.

CMG Rookie

I know you're not a cook - but I just pre-ordered on Amazon a Wheat Free Italian cookbook by Jacqueline Mallorca. I'm not sure when it is coming out; but, I saw her other book "The Wheat Free Cook" at Williams Sonoma and it looked pretty good. So, if you are missing your italian favorites, you might want to give it a try!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748

    Michelle C.
    Newest Member
    Michelle C.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal.  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) the small intestin in Celiac Disease and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  Why is poorly understood.  In fact, it wasn't even know that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So as part of your symptoms you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were sypmptos. Our western diet has many deficiencies build into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks for symptoms can come on quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, and indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog, deficient choline, iodine, thiamine. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study    
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
    • Scott Adams
      I am only wondering why you would need to cut out rice? I've never heard of rice being any issue in those with DH.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.