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Newly Diagnosed And Overwhelmed..

SarahMay

By SarahMay
in Coping with Celiac Disease

Recommended Posts

SarahMay Newbie
SarahMay
Posted

Hi,

 

I'm new to the forum so I'm sorry if this is in the wrong place or if my questions appear a little stupid. I've been suffering with Celiac-like symptoms as far back as I can remember. However, this Summer things progressed to a point where I couldn't take it so eventually doctors did the bloodwork and the scope both of which were positive for Celiac Disease. So, as of today I have been officially diagnosed. 

 

My problem is that I don't get to see a dietician for a while. The doctor said there's a waiting list.. I'm trying my best with the gluten free diet (I went gluten free before I got the results because I knew I was definitely intolerant, even if it wasn't Celiac Disease)  on my own but I really don't have a clue what I'm doing..I'm simply living on store bought items that explicitly state that they are gluten free. I was just wondering if any of the people here with more experience could offer any guidance on what is a healthy gluten free diet? I don't eat meat really, except for chicken. 

Similarly, I have no idea where gluten can be hidden and the more I research, the more confused I become. 

 

I've been trying to eat as gluten free as I know how since I got the scope done , but I messed up and ate potato wedges (not knowing they contained gluten, silly me) and ended up with the worst acid reflux I have ever experienced in my entire life. Does anyone else get this symptom after they have been glutened? 

 

Similarly, can anyone offer advice on cross contamination, how exactly it happens and how I prevent it? I live in student accommodation at university..so I'm a bit worried about this one.

 

So sorry that this post is a bit scattered. I think I'm still in shock since I just found out today. Thank you. Any help is greatly appreciated. 

 

Sarah :)

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kareng Grand Master
kareng
Posted

Here is a good place to start. What country do you live in? Some products and laws are different by country.

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

shadowicewolf Proficient
shadowicewolf
Posted

Hi,

 

I'm new to the forum so I'm sorry if this is in the wrong place or if my questions appear a little stupid. I've been suffering with Celiac-like symptoms as far back as I can remember. However, this Summer things progressed to a point where I couldn't take it so eventually doctors did the bloodwork and the scope both of which were positive for Celiac Disease. So, as of today I have been officially diagnosed. 

 

My problem is that I don't get to see a dietician for a while. The doctor said there's a waiting list.. I'm trying my best with the gluten free diet (I went gluten free before I got the results because I knew I was definitely intolerant, even if it wasn't Celiac Disease)  on my own but I really don't have a clue what I'm doing..I'm simply living on store bought items that explicitly state that they are gluten free. I was just wondering if any of the people here with more experience could offer any guidance on what is a healthy gluten free diet? I don't eat meat really, except for chicken. 

Similarly, I have no idea where gluten can be hidden and the more I research, the more confused I become. 

 

I've been trying to eat as gluten free as I know how since I got the scope done , but I messed up and ate potato wedges (not knowing they contained gluten, silly me) and ended up with the worst acid reflux I have ever experienced in my entire life. Does anyone else get this symptom after they have been glutened? 

 

Similarly, can anyone offer advice on cross contamination, how exactly it happens and how I prevent it? I live in student accommodation at university..so I'm a bit worried about this one.

 

So sorry that this post is a bit scattered. I think I'm still in shock since I just found out today. Thank you. Any help is greatly appreciated. 

 

Sarah :)

Do you have access to someplace where you can cook your own meals? Even a microwave and a refrigerator is better than nothing.

 

Your basic items, meat, veggies, and fruit are all naturally gluten free.

KCG91 Enthusiast
KCG91
Posted

Hey SarahMay,

 

I just got diagnosed last month so the overwhelmed feeling is still fresh in my mind! There's so much to learn... Now I've got my head around it more I'm trying to see the inconvenience of adapting as just the price of feeling better and healing. I'm also spending a ridiculous amount of time on blogs by Coeliacs and of course this forum (the Search function to the left of the page is great)

I'm also in a student flat - as if they weren't complicated enough?! If you don't already, keep all your food and equipment separate (I replaced anything that was scratched, plastic or wood. Ideally I'd like a gluten-free kitchen with brand new equipment buuut I only have a few months left at uni...) Don't share toasters, either - think like a breadcrumb ;) If it can get there it's a no no. Keep all your stuff on the top level of the fridge, own cupboard/drawer etc etc. Check all the food in your cupboard/fridge and if it's a jar of something you might've stuck a bread-crumby knife in, chuck it (or donate it to your flatmates - take the opportunity to explain to them that they really really can't put dirty knives etc into your stuff). Also check all the ingredients - if it has an ingredients list, read it. Everything, every time! These lists (safe and not safe) have helped me so much, I saved them to my phone so I can use them when shopping. 

https://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html 
https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

 

I'm veggie so I don't have as many options as some. I'm eating a lot of risotto (check the stock is gluten-free), gluten-free pasta dishes, egg things (omelette, frittata), stews and curries (again, check the stock and asafoetida if you use it). And soup! If you can find gluten free soy sauce (or tamari sauce) and rice noodles (or rice) you can make stirfry. Pasta dishes, curries and soup can all be frozen too. If you're in the UK, have you asked your doctor/GP about prescribing gluten-free food? I thought I'd have to wait ages for the dietician to do this but apparently GPs can. 

Poor you with the acid :( I had that a bit last night but it does take a while for your system to settle down apparently so I don't know if I ate something or if it was something else. I love this blog and this post has some good ideas for dealing with a glutening Open Original Shared Link 

Good luck! (Oh and as someone on here said to me, don't be too hard on yourself in the first few months if you make mistakes or find it a lot to take in)

JustCricket Newbie
JustCricket
Posted

Hi,

 

I'm new to the forum so I'm sorry if this is in the wrong place or if my questions appear a little stupid. I've been suffering with Celiac-like symptoms as far back as I can remember. However, this Summer things progressed to a point where I couldn't take it so eventually doctors did the bloodwork and the scope both of which were positive for Celiac Disease. So, as of today I have been officially diagnosed. 

<snip>
Sarah  :)

 

Hi, Sarah. :)

 

Given how one feels when they're gluten intolerant and the boon such a diagnosis can be, I say: congratulations! Welcome (from a newbie)! I'm still getting used to the board, so I hope this is clear, where your quotes are and my responses are.

 

My problem is that I don't get to see a dietician for a while. The doctor said there's a waiting list.. I'm trying my best with the gluten free diet (I went gluten free before I got the results because I knew I was definitely intolerant, even if it wasn't Celiac Disease)  on my own but I really don't have a clue what I'm doing..I'm simply living on store bought items that explicitly state that they are gluten free. I was just wondering if any of the people here with more experience could offer any guidance on what is a healthy gluten free diet? I don't eat meat really, except for chicken. 

 

Do you eat any protein type of foods? Any lactose intolerance? Eggs, beans, and cheeses can help you round out your diet. If you pair the non-meat protein with a starchy plant product, that will give you a complete protein. So, beans and rice is a good combination. Yogurt can also help, unless you don't tolerate it.

 

Similarly, I have no idea where gluten can be hidden and the more I research, the more confused I become. 

 

That's understandable. I mourned not being able to eat my favorite breads, and the cost of the processed gluten-free foods, but sometimes, it's the easiest and best place to start. I used the gluten-free flour mix in the ratios on this chart: Open Original Shared Link. I made pancakes a lot. Not very weight-loss friendly, but I was more worried about actually eating than how it would affect my figure. heh. Since then, I've learned to back off the carbs and focus on the fruits and veggies. Baked potatoes are good for a snack or meal, Salads are the best, but I had to make my own dressings (thousand island and oil/vinegar), until I discovered my grocery store's gluten-free list. (That's Publix, by the way.) 

 

I've been trying to eat as gluten free as I know how since I got the scope done , but I messed up and ate potato wedges (not knowing they contained gluten, silly me) and ended up with the worst acid reflux I have ever experienced in my entire life. Does anyone else get this symptom after they have been glutened? 

 

YES! OMGOSH, yes. One of my worst symptoms was the ungodly heartburn. I didn't get relieve until I went gluten-free. Any time I get glutened, it comes right back.

 

 

Similarly, can anyone offer advice on cross contamination, how exactly it happens and how I prevent it? I live in student accommodation at university..so I'm a bit worried about this one.

 

It depends on how sensitive you are to gluten. If you're VERY sensitive, you don't want any "gluteny" food to touch what you're going to eat. I went out with a friend and ordered a salad, told the server I can't have bread. The salad came out with croutons on it. I didn't send it back. I probably should have, but it's a long story. Anyway, I took the croutons off and ate the salad. I didn't really notice a reaction, but if you're very sensitive, you'll not want to take the chance. 

You have to be careful of your home products like toothpaste, shampoo, etc., and there are lists online. Replace your cookware, or if you use cast iron (probably not, eh?) you have to completely strip the seasoning and re-season it. (Check your Dollar Tree and Walmart for cheapies.)

 

Look out for words like "Modified Food Starch" "Malted flavoring" and such, and check to see if allergy information includes wheat, barley or rye. If you are sensitive to other grains, obviously, you'll want to avoid those, too, but I hope that isn't the case for you. I have some mild problems with oats myself, and when I'm sick, sometimes rice doesn't sit well. :(

 

I have taken to juicing after a glutening and try to supplement my meals with smoothies made with almond milk and fruit/veggie juices, as well. I don't have a proper juicer, though, so I just strain the juice. lol. Maybe more than you wanted to know. 

I hope I offered something helpful.

GF Lover Rising Star
GF Lover
Posted

Hi SaraMay and Welcome to the Forum.

 

Try to stay away from packaged gluten free food for awhile.  Not only is it expensive but also very high in calories.  Try to eat natural foods.  You can prepare chicken ahead of time and make chicken and rice or rice and vegetables.  Use fresh vegetables If you can, then frozen if its easier, never canned because they lose so much nutritional benefit.  Lots of fruits, seeds and nuts.  Eggs can be for breakfast or hard boiled for a snack.  Try to stay away from high fat food, like bacon, for awhile until your insides start to heal.  Start a good probiotic for digestive health.

 

Cross contamination happens when gluten foods come into contact with gluten free foods.  Double dipped utensils in condiment jars, butter dish, crumbs from a toaster, cutting boards and Teflon pans.  If it can scratch, it can contaminate.  You want to keep your kitchen ware and foods away from others.  Spices are usually gluten free but watch any seasonings.  You need to get in the habit of reading every label every time you purchase something.  There are a ton of naturally gluten free items that wont say gluten free on the packaging ie: potato chips.  Anything listing wheat, barley or rye is a no no.   I use a black sharpie to mark my foods with a gluten-free.  Some people use colored stickers.   In your case, I think a large plastic storage box with lid would keep all your kitchen ware and dry foods safe and be a reminder to your room mates that everything in it is off limits and label everything you have in the fridge.  Try not to eat out at all during the first few months and then very rarely.  It is extremely difficult to avoid cross contamination in restaurants that serve gluten and gluten free foods.

 

Keep learning and ask questions if you need to.  This is a great community to be involved with. 

 

Colleen

gilligan Enthusiast
gilligan
Posted

I'm new at this also and still learning.  But, one thing that helped me quite a lot was finding gluten free blogs on Facebook.  There are a lot of them!  There's also an app called ShopWell that allows you to scan bar codes to determine if grocery items are gluten free.  There's a definite learning curve involved in this.  I agree with others that have already posted responses - try to avoid the gluten free items and stick with fresh foods for awhile.  Once you get in the habit of doing this, it won't seem quite so hard after all.  Keep boiled eggs in the fridge, carrots/apples and peanut butter, hummus, and nuts around for a quick snack.  If you aren't dairy intolerant, keep cheese or yogurt on hand.  These foods will fill you up quickly until you can get a meal put together. The hardest part for me is meal planning.  It's very frustrating to have to think about everything I eat.  I was used to throwing things together quickly.  As suggested above, try to avoid restaurants for a few months.  You can't trust a gluten free menu item. As a student, that's probably not easy for you to do.  The only two that I totally trust (and this varies by location and store) are Chipotle and Outback Steakhouse.  The dietician that helped me suggested that I join a celiac support group, but unfortunately, there isn't one in my area.  Maybe, you'll have one in your area.

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SarahMay Newbie
SarahMay
Posted
  • Author

Thanks so much everyone. It's so nice to feel part of a community as opposed to dealing with this alone! 

 

Kareng, I live in Ireland. :) 

 

KCG91, it's nice to meet another student dealing with this. I think that's the hardest part for me; Trying to go gluten free on a student budget and in shared accommodation. Thank you for all the advice and that list is amazing :o:D

 

JustCricket, I was so worried about the heartburn and acid feeling. I was worried I had another problem too :L I think I might try the smoothie idea as it would be an easy breakfast idea for me anyway! :)

 

gluten-free Lover, I noticed that. I've been gluten free for a little over two weeks now (even though the results only got back to me today), and I think I may have gained a little weight if that's even possible. I was looking at the calories and it's ridiculous. 

 

Gilligan, I'm not sure if I'm dairy intolerant. I still feel ill and the only thing left that could be affecting me is lactose. However, I'm not sure if it's this or if I just haven't been gluten free for long enough so I'm still eating dairy right now until I see a diet specialist. :) Hmm, That's a good idea. I'll check out the support groups. 

 

Thanks everyone! :D 

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Just wanted to add that the calories aren't the only reason to stay away from packaged gluten-free food.  Some of it is ok, but a lot of it has a long list of crap in it to try to make it taste normal.  Not only is your system likely to be very sensitive to this stuff for awhile, none of it is healthy for anyone - celiace or not, healed or not.  It's really important to learn to read the labels.  You can Google any ingredient and find out if it's from a gluten source or if it has any potential side effects (i.e. some additives are known to cause stomach problems).  Also watch out for products that have on the label that they are made on machinery that is also used to process foods that contain wheat - that's a big source of cross-contamination.

 

Good luck - and welcome!

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