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mollylou

When will I feel normal again?

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Hello Celiac friends,

I am new to this world and I would really just love to get some advice and possibly some questions answered. 

I am 20 years old and I was diagnosed about one month ago. Since then I have been struggling to stick to my gluten free diet and also struggling hard to stay positive. 

Here are some things I have learned thus far:

1) Gluten hides EVERYWHERE.

2) Celiac Disease gets little to no recognition and I feel very thankful that I found out what I was facing before it caused more problems.

3) People without this issue, do not understand.

Before I was diagnosed I genuinely thought I was going crazy. Out of no where I suddenly had no energy and had immense trouble getting anything accomplished, which is basically the worst case scenario if you're a junior in college. This new sickly feeling then grew into severe anxiety and panic attacks. Then came the never ending diarrhea and loss of appetite. It got to the point where I didn't want to eat at all. I had never experienced any of this before and it caused me to become massively depressed.

Once I was diagnosed, everything seemed to make sense. I felt so ready to begin my diet and to return to my normal self.

Well here I am, a month in, and I feel slightly better but not back to wellness. I am still extremely tired, and my brain still has trouble functioning. I am bloated all of the time and I also experience almost daily abdnominal pain. I am frustrated and I need answers.

Sorry for rambling but it's hard not to when speaking on this subject. But here are my main questions:

1) How long were you on a gluten free diet before you began to feel well & happy again?

2) Is there a light at the end of this tunnel?

3) Is there anything I can do to assist my body in healing? 

4) I am still experiencing mild anxiety, should I treat this as a separate issue or do you think they could be connected? 

This summer I am supposed to visit Europe for the first time (a dream I've had since forever) and I also turn 21. I would love to feel at least close to normal by then. I am young & I don't want this disease to keep me from living my life.

Any answers or advice would be greatly appreciated.

I hope when you read this you are feeling well and in a good place on your journey.

Sincerely,

Extremely Frustrated Human Being

 

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6 minutes ago, mollylou said:

Hello Celiac friends,

I am new to this world and I would really just love to get some advice and possibly some questions answered. 

...

Here are some things I have learned thus far:

1) Gluten hides EVERYWHERE.  Correct

2) Celiac Disease gets little to no recognition and I feel very thankful that I found out what I was facing before it caused more problems.  Correct

3) People without this issue, do not understand. Correct

 ...

Well here I am, a month in, and I feel slightly better but not back to wellness. I am still extremely tired, and my brain still has trouble functioning. I am bloated all of the time and I also experience almost daily abdnominal pain. I am frustrated and I need answers.

Sorry for rambling but it's hard not to when speaking on this subject. But here are my main questions:

1) How long were you on a gluten free diet before you began to feel well & happy again?

I started feeling better within a week or so.  But it took 6 months to learn the gluten-free diet and get better at it.

2) Is there a light at the end of this tunnel?

If you are like me, yep, for sure! :)   It may take 6 months or a year to feel better, maybe longer.  We are all individuals and one time span for recovery does not apply to all.

3) Is there anything I can do to assist my body in healing? 

Yes, Eat whole foods  like meats, veggies, eggs, and nuts.  Skip all dairy for a few months.  Avoid processed foods.  Try not to eat anything with more than 3 ingredients on the store label for 6 months.

4) I am still experiencing mild anxiety, should I treat this as a separate issue or do you think they could be connected?

Your anxiety may be directly related to celiac disease.  Being sick is not a pleasant thing and can affect our entire bodies.  Give your body some time to recover and start absorbing nutrients again and see if your anxiety goes away.

This summer I am supposed to visit Europe for the first time (a dream I've had since forever) and I also turn 21. I would love to feel at least close to normal by then. I am young & I don't want this disease to keep me from living my life.

Any answers or advice would be greatly appreciated.

I hope when you read this you are feeling well and in a good place on your journey.

Sincerely,

Extremely Frustrated Human Being

 

 

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Honey, recovery time is often not as fast as we like.   There is a steep learning curve to the gluten-free diet (you have already experienced it.  You have damaged more than just your small intestine.  It is going to take time.  Like weeks or months.  Some of us have taken over a year.  Luckily, you are young!  Healing should go much faster because you are young.  The anxiety is completely related to celiac disease.  So is depression.  Everyone is different with different issues.  You just have to be patient.  

Read our Newbie 101 thread pinned at the top of the "Coping" section of the forum.

Europe? Was just there last summer.  There are restaurant cards in most languages.  You can alays find food at any market.  Just focus on school and eating gluten free.  Avoiding processed foods and maybe dairy for a while (lactose intolerance common) may speed healing.  

Hang in there!  We are here to help!  

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We all go through this, hell I thought I was going insane and dying before I got diagnosed your not alone there at all, I was even running a bucket list expecting to die in 6 months.

Can take a few weeks for it to start to improve you will notice major differences in 2-6 months on a strict gluten-free Diet. Fatigue and anxiety are normally made worse by nutrient deficiencies we develop due to damaged intestines limiting out intake. Allergies and intolerance might also develop and cause these issues to intensify. As suggested above switch to a whole foods diet for a few weeks or a month at first with no processed food or dairy. This will help jump start you down the path to healing.

Check with your doctor about having your levels checked for Magnesium, B-Vitamins, Iron, Niacin, D, E, etc. and see if you have any issues. As you mentioned anxiety I will say Magnesium and a B vitamin supplement will work wonders with this, I might suggest this one I take that I add to a drink in the mornings and afternoons for stress & energy by Liquid Health. I find Doctors Best Chelated Magnesium Glycinate to be easy on the stomach and best for the morning and evenings. If you alright with it Magnesium Calm works good also but being a magnesium Citrate can cause some digestive issues. I will leave you some helpful links on where to get some stuff, how to order specialty foods at your local grocers late on, and the link to newbie 101 page.

Talk to your doctor about these issues and supplement and a dietician about building a diet and regime to suite your needs.

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

https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

 

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Hi Molly!

Welcome and ((((hugs))))!

The good news about being diagnosed as young as you are is that you likely don't have as much overall damage as people diagnosed later in life.  So your recovery may be faster.

Make sure that your doctor has tested you for common deficiencies that celiacs experience, B12, D and iron seem to be common ones.  

For the constant bloating and abdominal pain try peppermint tea and ginger tea.  Both are very soothing.  Make sure that what you are eating is clearly gluten free, of course.  Some of us have issues with other foods as well.  I cannot do any oats unless I want to be in considerable pain.  I also found out that some additives in foods really bothered me and made me painfully bloated.  Carageenan in my almond milk and inulin in my probiotic were terrible for me and as soon as I cut them out my bloating was reduced by 75%.

Best wishes to you for continued healing!  Keep asking questions and update us on your progress!

For your questions:

1) How long were you on a gluten free diet before you began to feel well & happy again?

It took me a full month just to have 1 normallish BM...but I was very sick and had been so for years. I'm just past the 3 year point now and feel so much better than I did at diagnosis.  

2) Is there a light at the end of this tunnel?

Absolutely!!😀😀  Give your body time, be patient, be diligent in your new way of eating and your body will heal.

3) Is there anything I can do to assist my body in healing?

Try to not eat out at first...say 6 months or so if you can.  Avoid dairy for a bit.  Eat really good, healthy whole foods as much as possible.

4) I am still experiencing mild anxiety, should I treat this as a separate issue or do you think they could be connected? 

It could very well be connected.  I would give the gluten free diet a chance to heal and see if there is improvement.

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On 2/25/2017 at 1:14 AM, mollylou said:

 

1) How long were you on a gluten free diet before you began to feel well & happy again?

2) Is there a light at the end of this tunnel?

3) Is there anything I can do to assist my body in healing? 

4) I am still experiencing mild anxiety, should I treat this as a separate issue or do you think they could be 

Any answers or advice would be greatly appreciated.

 

 

Hi! I'm a littl younger than you but went through almost the exact same thing!

1) I got diagnosed in November of 2015 and was feeling better by July 2016, it took a little while but stick with it! I also found out I was allergic to oats even if they were gluten free, which isn't to terribly uncommon for people with celiac so maybe try that out?

2)Yes there is! Gluten free food can be totally unbearable but you get used to it and find stuff that works for you! If you need any suggestions I got you!

3) Trying to eat healthy helps of course but don't over do it! Also try and stay clear of eating out for a little bit unless you are 100% positive it will be gluten free. I've also found use a pill Glutenase (I may have spelled that wrong) when eating out helps battle symptoms.

4) I actually have anxiety as well that came up after my celiac. At first they tried treating it together but it's really helped bring treated separately.

 

Lastly, I also had the opportunity to go to Europe this summer and there definitely was some times where I didn't feel quite normal but most places would help to accommodate for my needs and again the Glutenase really did help there too. If it have anymore questions, just ask we're all here for you! :)

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Hi Molly! 

I am 21 years old and in my junior year of college. I was diagnosed in August. I am so glad I did finally get an answer to all my symptoms but I am still in the healing process phase. Through a lot of reading, there really is no exact timeline for when you will start feeling better. I have been strictly gluten free for 5 months and I've never been more exhausted, anxiety ridden and depressed. I had my winter break from college this past month, I barely left my bed. The one time I did, my friend thought it was a good idea for us to go to a bar (I don't drink either, even if it is a "gluten free" option, I get very sick) just to catch up, I had a severe panic attack. It is comforting to hear that you have the same symptoms. 

Within these five months I have also learned a lot, for what works for my body. I don't eat anything processed, even if its gluten free. I cut out diary completely. I also have a reaction to eggs, so I cut out those as well. I also don't eat raw foods (like salads and raw veggies) I noticed that it was just too much for my body to digest. I also bought a digestive enzyme, I take chewable ones since they digest better for me. I take a few before and after I eat that seems to help me. Also a probiotic, I've noticed the powder form works better for me too. 

My family bought me Jennifer Esposito's books. She has an extreme case of celiac. Reading them gave me hope and also gave me a lot of answers, I highly highly recommend them. I follow all her recipes. As you know with a hectic school schedule it is a lot to deal with constantly cooking and baking but it is worth it. It has become like a meditative practice for me, I feel better when I know I am doing something good for myself.  

& You are completely right, no one understands unless they have this disease. Friends think I am overreacting and just being dramatic. Coming to this site, and reading peoples stories (such as yours) gives me comfort in knowing there are so many people out there feeling the same. It is hard balancing your life with this disease because it just takes over. Soon we will find a sense of our new normalcy and our light at the end of the tunnel, it is just a matter of time. 

 

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Our fellow celiacs have already given you great tips: no processed food, no dairy for a while, cut down sugar, eat whole foods. Be patient and have as much rest as you possibly can. I only really started to feel better after having iron IV, B12 shots and lots of vit D and folate supplements. So, get your levels checked! 

Be sure to feel ok and that you already have a grip on things before going on big trips. In any case, I would suggest going to Vienna. I went there 3 days after my diagnosis. Everyone was so nice to me that I cried (happiness) the first time I ate out. And... every single menu, everywhere, I mean EVERYWHERE, has all allergen information. It was a dream. 

I haven't gone back to Italy since on gluten-free diet but I hear great things. In any case, in italian and portuguese food is easy to tell where the gluten is hiding. It isn't common to find soups or sauces with flour in it, salads are mostly just seasoned with oil and vinegar or lemon juice, the ingredients in a dish are mostly very simple... makes it much easier, you "just" have to stay away from bread and pasta. I find Switzerland more difficult: a lot of sauces with flours, gluten containing seasonings everywhere and a lot of boullion. Germany is the same, I imagine. 

I am going to London soon, seems to be a great place for us celiacs. Looking forward to all the gluten-free bakeries and gluten-free burgers. Just have to find some gluten-free fish and chips.

 

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I am also in the same boat. I'm 20, in my junior year of college, and got diagnosed a month ago. I also still have the brain fog, upset stomach and low energy, as well as depression from being sick so long.

If you're like me and ate a lot of bagels and frozen pizzas pre-diagnosis, cooking every meal might seem daunting, especially with the low energy and need to do homework. I've found that you can cook up a bunch of chicken breasts/thighs  or pork chops in the oven and make big batches of rice/potatoes and vegetables that will last you quite a few meals for little time/effort. I also use gluten-free broth and make big batches of soup with lots of vegetables that will also last a while. On weekends I'll usually make two dishes, one for lunches and one for dinner. I usually eat half of whatever I make for my meals for a week and freeze the other half. Tupperware is definitely my friend! Still haven't figured out breakfasts, but if you eat eggs, that could be a good option.

I know in Italy, Celiac diagnoses are quite common as everyone is tested as a child, so restaurants there are often quite excellent at providing safe gluten free options. As someone else mentioned, having cards saying you are Celiac and need gluten free food in different languages is good. Even though most people in Europe speak English, you wouldn't want to have a problem because of a miscommunication.

Lastly, If you go to https://www.celiac.ca/healthcare-professionals/management/ , it says that 50 mg gluten or 1/64 of a piece of bread is enough to cause damage. Some people can't tolerate even that, though I can't find the study showing it right now. It might help you make your point to people who aren't getting it.

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    • Thank you, Ennis and Kareng for the amazing tips! I will head over and start reading the newbie 101.  So glad I found this forum with these amazing insights, so I can grow my new knowledge. 
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