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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,875
    • Most Online (within 30 mins)
      7,748

    Jen J.
    Newest Member
    Jen J.
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • 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.