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Joepilk

Questions from recent diagnosed celiac

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Hi I am 18 and recently been diagnosed with ciliac and been on a gluten free diet for 9 days but i still have discomfort and a little pain but not much after eating non gluten foods. Is that normal to still feel discomfort after eating ? Because i lost a lot of weight before being diagnosed and want to gain it back but i don’t feel comfortable enough to eat a lot yet and i have really bad anxiety and depression that seems to have started a year and a half ago along side symptoms of my celiac. I used to be very active and never had anxiety and was never depressed is it likely that my celiac is the underlying cause ? And if so will staying gluten free help ? Also my anxiety always has me staying up looking up how long should it take to feel healthy again and i just feel like i am lost and don’t know anything about celiac so it would be nice to have tips And Guidance from someone who is knowledgeable about gluten free diets and what to expect. And i apologize if this is sloppy and not well organized i am writing this late at night while having bad anxiety . But I’m mainly writing this for just a call out for answers and for info on how to approach this disease but my last question is does the brain fog ever go away?

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Hi Joe,

Welcome to the forum! :)

How long we take to feel better varies a lot.  One of the most important things to help that healing is to keep 100% gluten-free.  Or as close as we can manage.   The immune reaction in celiac can take months to calm down.  So any little ingestion of gluten can trigger a months long immune attack.

Depression, anxiety etc are linked to celiac disease.  Our bodies don't function well without the critical nutrients they need to operate and repair cells.  That can affect hormones that affect our mood and also nerves that form our brain.  Did you know your brain is mostly made of fat cells and nerve cells?   Celiac damage can make it hard to absorb B-vitamins that are important for nerve health.  That can affect our brain.  Celiac can also reduce our ability to absorb fats.

Your anxiety could very well be caused by celiac damage.  And it could reverse or go away too.  Just stick with the gluten-free diet carefully and be patient with your body.

You may feel better not eating dairy for a few months.  Celiac impairs our ability to digest dairy sugar (lactose).

 

Edited by GFinDC
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GFinDC has given you excellent advice.  Anxiety is so common with celiac disease and it does get better as you heal.  Keep researching celiac disease and the gluten-free diet.  Your best defense is knowledge.  So educate yourself so you can advocate for your health for the rest of your life.  

Ask questions.  We are here to help.  We have all been in your shoes.  That means we can offer common sense advice, but we are not doctors.  

We know.   We care.  

 

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Hi Joe,

It is quite difficult to navigate this diagnosis while feeling down and anxious. Sending good vibes your way! 

I'm about 5 or 6 months in, this is what I learned, (I am not a DR and still a newbie) :

Try to eat naturally gluten free whole foods rather than processed foods until you are feeling better.
This not only makes you heal faster, but you won't have to waste your time looking at labels. 
Also, a low fodmap diet has helped me with gas and bloating. I have a low fodmap app on my phone so i can quickly look things up while shopping. Soon I can reintroduce higher fodmap foods to see exactly which ones were bothering me.

I didn't want to believe it at first, but I also had tons of food allergies. I was feeling much worse after going gluten-free because I was eating tons of apples and guess what? I am allergic to apples. Also eating tons of soy, but I am allergic to soy.

It feels annoying and limiting at first, but once you know what the poison is, you stop taking it and you will start to feel better. Give your body time to heal and be kind to yourself. I find it less complicated to simply prepare everything myself. Can you see a knowledgable nutritionist? 

I also felt much more liberated when I stopped trying to replace my former go-to gluten containing foods, but tried discover new things to enjoy. Also, I find it WAY easier to go to a fresh produce market than a supermarket, where I often feel overwhelmed.

Consider chosing cooking anti-inflammatory gluten-free recipes as a new hobby :)  

PS 
know your limits, I can eat first and then go see friends at restaurants for a drink to stay social, but so far I can't do it at an italian restaurant and I admit it. 
I am a completely non-violent person, but for now, when I see people eating pizza, I want to slap them with a slice. hahahahaha.
I wish I were joking ;) This insane jealousy will subside once I find a good pizza recipe. I hear cauliflour pizza crust rules :)

All my best Joe!

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4 hours ago, GFinDC said:

Hi Joe,

Welcome to the forum! :)

How long we take to feel better varies a lot.  One of the most important things to help that healing is to keep 100% gluten-free.  Or as close as we can manage.   The immune reaction in celiac can take months to calm down.  So any little ingestion of gluten can trigger a months long immune attack.

Depression, anxiety etc are linked to celiac disease.  Our bodies don't function well without the critical nutrients they need to operate and repair cells.  That can affect hormones that affect our mood and also nerves that form our brain.  Did you know your brain is mostly made of fat cells and nerve cells?   Celiac damage can make it hard to absorb B-vitamins that are important for nerve health.  That can affect our brain.  Celiac can also reduce our ability to absorb fats.

Your anxiety could very well be caused by celiac damage.  And it could reverse or go away too.  Just stick with the gluten-free diet carefully and be patient with your body.

You may feel better not eating dairy for a few months.  Celiac impairs our ability to digest dairy sugar (lactose).

 

Thank you so much for the advice and tips 😀 my last few questions are sense celiacs have a hard time digesting lactose would lactose free milk be a safe option to have with gluten free cereal? Also sense depression and anxiety are linked to celiac disease would going on a anti depressant be a wise idea? Or just waiting for healing to see how the anxiety and depression get. And lastly i read you can have a reaction just by breathing in gluten should i be relatively safe if i eat on my own plastic plates and use plastic forks/spoons?but thank y’all all so much for your reply’s it helped me so much and now i don’t feel alone in dealing with this 😀

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Joe-

 In very recent years there has been some medical discussion that refers to the digestive tract as a "third nervous system" now. This is because they've found and confirmed that the microbiome (the critters) in your gut actually can "signal" the brain, with the same serotonin uptake system that is the ajor part of anxiety and depression, and pretty much all the powerful drugs for that (i.e. serotonin uptake inhibitors) are targeting this same system.

 So absolutely, YES, any imbalance in that system, like a celiac response, could be physically affecting your mindset. If you've got access to medical care or you are seeing a GP now, by all means ask them about using an anti-anxiety medicine for the short term, maybe for six months until your gut has really had a chance to heal and you've gotten a grip on celiac.

Ten or fifteen years ago, there were about six doctors on the planet, literally, who had any idea what to do with celiac. Now, at least most doctors know it is real, how to make a referral to a specialist, and the supermarkets can SO many gluten-free foods. There are some pretty good web sites for gluten-free foods as well, although they tend to be pricey unless you keep an eye out for sales and specials. Amazon Prime Now (which uses Whole Foods) and Thrive.com (Thrive Market) can be good places to look.

Gluten is used in so many products, and there's so much cross-contamination in food preparation areas, that it can really take a while to be comfortable about what you are eating--or not. Personally, I'll keep a small cooler bag in the car all the time, with a couple of gluten-free protein shakes and a couple of gluten-free protein bars (meat bars or vegan ones, both are shelf-stable) and some packets of mixed nuts. It isn't gourmet fare, but it is reliably gluten-free and labelled as such, and it removes any anxiety about "What am I going to eat?" if I go out, or am stuck out, and mealtime is passing. I just call it "my dog food".

In the meantime, you've got to read up and scrutinize and question everything about your food, and yes, that's a lot to absorb. Don't go crazy with it, now that you've been diagnosed it will just take time to get better and learn to stay that way.

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Thank you so much for your reply it means a lot i am ganna go probably  next week to start taking anti anxiety meds and thank you for your advice on where’s to find gluten free foods everyone’s reply’s are helping so much and helping me not feel overwhelmed i plan on eating a lot of salads and healthy foods 😀

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About anxiety, I have it too, it sucks in general, but I am trying super hard to keep anxiety separate from food so that it won’t be an ongoing thing once I heal.

My solution is having at least one or two meals or picnics ready. And one in the freezer.  I am able to remain spontaneous and it lowers my anxiety about future meals. Always have a lunch/munchie bag ready as Iyfan said and a meal bar in your bag. I had an emergency hospital visit last week and all of this came in handy ! Today the trains were stopped for hours and hours. I was so happy to be prepared. It just makes everything easier.

I hope your anxiety goes away fast, meditation helps me you might want to try it if it is possible for you.

 

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Be careful with salad dressing! There are def some gluten free options but some companies don't even test for it so make sure to research what kind is safe. This one shocked me!

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Hi Joe,

I don't know how much the anxiety bothers you / affects you.  So I can't say if it is worthwhile for you to take drugs for it.  I know for me my anxiety reduced quite a lot after a couple months on the gluten-free diet.  I didn't take drugs for it myself but maybe if I was smarter I would have.  It certainly was a relief when my anxiety subsided.

Lactose free milk is not a bad idea to try.  There are also almond milks and rice milks etc.  I suggest staying away from soy milk as soy is a top 8 allergen in the USA.

You probably don't need to use plastic plates and silverware.  I keep a small container of silverware that is just for me.  Knives, spoon, fork etc. on the counter.  If someone has been baking with gluten flour I rinse the silverware off before using it.  Same with plates and such, I wash them or rinse them if they are already clean.  It just takes a few seconds to do that.

I also have a small dorm style refrig that I keep some of my  food in.  That way it's separate from the gluten eaters.  Another thing is to keep all your gluten-free food on the top shelf in a shared refrig.  That way gluten crumbs don't fall down on your nice, expensive gluten-free foods.

I mostly cook my own food.  My two brothers also cook but I seldom eat what they cook.  I figure if they eat gluten they must have cooties so no thanks. :)

There is a thread called Newbie 101 stickied in the "Coping With" section.  It has some tips that may help you.

You are young so you may recover quickly.  It all depends on how good you are at avoiding gluten.  Things like shared peanut butter or butter, mayo etc can be a problem.  Get your own and label them Joe's stuff, touch and die! :)

 

 

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Personally, I would carefully weigh the risks and benefits of an antidepressant.  Do some research and make an informed decision.  

Once you heal from celiac disease, you may that your depression and anxiety melt away (if you find that celiac disease was the cause of it).   It did for me.  Every medication has a risk.  Discuss all options with your doctor.  Keep in mind that a newly diagnosed celiac does go through a grieving process.  This is normal.  😊

 

Edited by cyclinglady

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Joe,

1 hour ago, cyclinglady said:

Personally, I would carefully weigh the risks and benefits of an antidepressant.  Do some research and make an informed decision.  

Once you heal from celiac disease, you may that your depression and anxiety melt away (if you find that celiac disease was the cause of it).   It did for me.  Every medication has a risk.  Discuss all options with your doctor.  Keep in mind that a newly diagnosed celiac does go through a grieving process.  This is normal.  😊

 

Cyclinglady has given you good advice.

see this livetrong article on the some of the issues to look out for when taking antidepressants.

They can ironically cause or make worse some of the symptom's you were trying to address by taking them.

https://www.livestrong.com/article/266958-can-depression-meds-cause-anger-issues/

see this article about how vitamins are used in psychiatry medicine. entitled "The Role of Vitamins and Minerals in Psychiatry"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/

you will see many of them are B-Vitamins plus Magnesium.

this research last year (2017) studies how B-Vitamins help us manage the pro-inflammation response in ourbody leading to depression (often) when we are low in them.

Entitled "The effects of vitamin B on the immune/cytokine network and their involvement in depression."

https://www.sciencedirect.com/science/article/pii/S0378512216302997

I swear (affirm) by how Magnesium and a good B-complex helped me.  I would also recommend you have your Vitamin D levels checked.

I hope this is helpful but it is not medical advice.

“Consider what I say; and the Lord give thee understanding in all things”

2 Timothy 2: 7

Posterboy by the grace of God,

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+1 on being careful with meds--any meds, for anything. Doctors are, in my experience, totally unaware of the complications of meds, and you can read those on the manufacturer's web sites to doublecheck the doctor. Or, see two docs, think it over for a week, for non-critical meds.

 "Keep in mind that a newly diagnosed celiac does go through a grieving process. " Oh hell, a haven't had a Guinness in well over a decade, and I still make a sad face and wave very time I see one pass by. Trying to keep gluten out of the food, makes the Ted Nugent diet seem damned tempting at times. But it beats all hell out of having an angry tiger in your gut.

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"Keep in mind that a newly diagnosed celiac does go through a grieving process. "

"Oh hell, a haven't had a Guinness in well over a decade, and I still make a sad face and wave very time I see one pass by."

Thanks for the laugh. Thank you for admitting this

I get this way with Deep dish Chicago style pizza- and although I have found some vegan cheese /gluten-free pizza recipes I make that are do able. no dice. IT still is hard.  My husband knows if he beats me to the other side and I end up being able to eat gluten and cheese (milk) again on the   " other side" when he comes to greet me and take me into the light he is to have a Deep Dish Chicago style pizza!

Joe, (original poster)

Welcome to the forum. As you can see there are a lot of great people here.  May you find comfort in the Celiac.com community on your healing path.

EDIT: Yes, the oppressive brain fog lifts, while healing staying hydrated with water. It is crucial. Hurting after eating even gluten-free -yep normal, with healing it will get easier. As for mood -strict diet and compliance works. Personally, I would heal up before making a decision about pharma meds for mood, as it is likely related to absorption,vitamin/mineral deficiencies as other posted above.

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Chicago deep dish pie....haven't had one of those since maybe 1979 when I was last in Chicago and able to get the REAL thing. Must remember to get back there one day to do it again.

Oddly enough, I just came across a brew called "Glutenberg". They say, and my gut seems to agree, that they brew about six different gluten-free beers. IPA, lager, golden, and STOUT. Yes, I had my first stout in maybe 15 years just last night. A little too sweet, a little too much chocolate note, definitely not a Guinness but after all these years...a whole lot better than nothing!

So far I've only seem them in 4 packs of 16 ounce cans, in Whole Foods on a sporadic basis.

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Hi Joe,

I was diagnosed last year at age 20, so I'm still a newbie too. For me, the brain fog was the first thing to go away, and it took about a month for it to improve enough for me to think it was all gone. Boy, was it nice to be able to be engaged in conversations again! As for the stomach pain/discomfort, mine is better but still hasn't fully gone away, but I had a bunch of issues with cross contamination this summer. Like others have said, the time it takes depends on the individual and how strictly they follow the diet.

It sounds like you don't like in a gluten-free house. If you just live with your parents, it may be a good idea to make it a gluten-free or close to gluten-free house (something along the lines of no baking with wheat flour, make most foods naturally gluten-free and have a dedicated area for gluten food/utensils to live). If you live with roommates it is a bit trickier (this is my situation). What has worked for me is to have my own dedicated gluten free counter area and all my cookware, utensils and food is stored above or below that counter. We don't share pots or pans because I find that other people don't always scrub pasta residue and the like fully off. I also talked to them about the seriousness of celiac, so they let know when they use flour and I clean anything that was out. This has helped a lot with my food-related anxiety, as I know I can eat my food without having to worry about it being contaminated.

In case salad dressings scare you, a recipe I like is: 2 Tbsp olive oil, 1 Tbsp lemon juice, some garlic, Italian seasoning and a pinch of salt and pepper. That makes enough for one meal salad for me and you can play around with the spices.

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