How Long Till You Can Truly Cope With Celiac?..

[tigerlily83]

Hi there. I am 28 years old and was diagnosed with Celiac 5 months ago. I was told that I was one of the lucky ones, to have been really sick for 3 weeks and within the following 2-3 weeks I had my diagnosis, Celiac. I remember I having the lab order for a "Celiac Panel" and having no idea what it was. I have been gluten free since them and had a few times of being cross-contaminated. I actually went on a Carnival cruise that following month bc it had been booked since April. They told me I would have nothing to worry about. Day one, I was sick and they said it's nothing they did. Day two, I was eating salad, I looked down after eating a piece and a lovely crouton was hidden under that piece, so just a confirmation to cross-contamination and a not so great vacation. I can't seem to completely come to terms with Celiac and how to deal with it. It is so frustrating and depressing and I feel like no one truly understands. I live in the KC area and really don't even know anyone that has it. I was also diagnosed in Nov. with having hyperactive nodules on my thyroid...seeing how my TSH being slightly low, led me to having a nuclear medicine thyroid uptake and scan done. I took a RAI pill in Dec. I know it can take months for my thyroid to level out. I know I will most likely be hypothyroid afterwards and the only certified gluten free medicine for that is Tirosint and for life. I just don't know how to deal with it. I feel alone and overwhelmed. People at work offer me food and then say, sorry I forgot, you can't have that. I just don't know what to do. How long does it usually take to feel more at peace with it?? It has been 5 months and yes, things are way more easier than what they had been prior. I just seem to have up days and down days. I also know that my 1st labs after the RAI pill were leaning that I was much more hyper due to a lower TSH and elevated T3 and T4 and that hyperthyroidism can make you more irritable. I just need support and advice and someone that really understands and might be able to help when it comes to support...

[GFreeMO]

I am in the KC area too. I don't really have any advice for you as I am struggling with the same thing. No one understands. Then when you add a corn and dairy allergy on top of it, it makes it harder. Hang in there! You are not alone in this..We all go through the same thing.

[josh052980]

It took me 10 months gluten free to get to where I am now and I feel 100% myself again. The key for me was letting go of being afraid that every little twinge I felt was gluten related. I guess in a way I had to totally except and yield to my limitations before I could feel myself again.

The best advice I can give you is to go at your own pace, and don't take unfounded advice as the gospel truth. The only person who knows what is going to make you feel better is you. The trip starts in your head; if you tell yourself you're going to get worse, you will get worse. If you tell yourself you're going to get better, you will.

[navigator]

I know that it's really overwhelming at first, but it does get easier. I was diagnosed eight and half months ago and it's really just part of my life now. I no longer find the gluten free lifestyle difficult or feel that I'm missing out. Probably the best bit of advice I can give you is (if you don't already do so), to get cooking and baking and you'll find that you can make gluten free versions of your favourite foods. Also find a nice local restaurant who are knowledgable of gluten-free and cross-contamination so that you can still enjoy going out for meals. I still have family and friend get-togethers and just make every thing gluten free so I don't have any feelings of being left-out or being different. I don't tell anyone that the food is gluten - free and it all gets eaten and I get lots of compliments. It was my son-in-law's 30th birthday at the weekend and my daughter (also coeliac) and I did the buffet for 150 people - all gluten- free. It was an 80s themed party and I'll post a photo later of the terrific gluten free cake she made. She didn't cook or bake till she was diagnosed in March 2009.

Hang on in there, use this forum and try not to define yourself by your diagnosis. Here's to your health improving and you feeling less overwhelmed.

[Gemini]

It took me 10 months gluten free to get to where I am now and I feel 100% myself again. The key for me was letting go of being afraid that every little twinge I felt was gluten related. I guess in a way I had to totally except and yield to my limitations before I could feel myself again.

The best advice I can give you is to go at your own pace, and don't take unfounded advice as the gospel truth. The only person who knows what is going to make you feel better is you. The trip starts in your head; if you tell yourself you're going to get worse, you will get worse. If you tell yourself you're going to get better, you will.

This is such awesome advice, Josh!

[kareng]

hey Tigerlily! I live in OP, KS.

I think that in the beginning on here, your personal messaging is limited. Had people messaging people trying to sell things. not saying you would but we need a few posts to see if newbies are " legit".)

I can try to point you out some local things if you need me to.

[Skylark]

Focus on what you can eat, not what you can't. Shop the outside of the grocery store, where all the nice produce is, the meat and fish, and the eggs and dairy. I only venture to the center of the store for rice, dried beans, nuts, coffee, and spices. Oh, and chocolate, which is an essential nutrient. It's not hard at all to find gluten-free chocolate. You may be used to eating a lot of processed food or convenience food but it never was good for you.

I have thyroid trouble too, though my immune system did the job of destroying my thyroid. I didn't need any fancy RAI to get that job done. Taking thyroid pills is not a big deal once it's stabilized. It becomes habit and you just grab one first thing in the morning when you head for the bathroom.

Tirosint is not the only gluten-free thyroid med, although I looked it up and it sounds pretty nice. Levoxyl is gluten-free, as is the Lannett generic. Open Original Shared Link Mylan makes generic thyroid as well, and while they don't test, a board member wrote them and they only use corn, rice, or potato starches in their pills. I have also spoken to Abbot on the phone and they don't test Synthroid for gluten because it is a sugar base. The only grain-derived ingredient is cornstarch and they only put a small amount. (You will see rumors about gluten in Synthroid becasue some people are sensitive to the dyes they use to color the tablets.)

[love2travel]

My diagnosis was a bit different than many because I did not have outward symptoms when I was diagnosed so I do not feel better physically, ten months later. It did take a few months for it to sink in because I wanted the gluten lifestyle so badly! I wondered how I could possibly have it if I could eat so much of it and not feel sick.

Fast forward a few months. I think it took me about six or seven months to feel completely fine with it - it is now such a part of my daily routine that I do not think about it or dwell on it. When in the grocery store I breeze on by the bread section without a whiff of envy. When I go out for a meal I do but now I am equipped with knowledge and know what to do in difficult situations. Planning is huge. My hopes also were high that I could master the perfect gluten-free bread. Well, upon finding out it is not possible those hopes were crushed. Now when I make bread I just think of it as a vehicle for whatever I want to put on it - my expectations are different.

I am so at ease with it that it seems so natural. Don't forget that we are all different, thankfully, and take different times to "get there". And when you do, you will be vey relieved and in control. Keep searching around this forum because it is a wonderful place to be without judgement.

Keep keeping on!

[Mago]

For me, its been almost exactly a year since going gluten-free. The first 6 months were the worst. I kept on getting glutened from eating out in the past year, which made me feel like I was starting fresh on the diet each time that happened. Right now, I am eating out as little as possible (which I know is hard for some people), and trying to eat mostly fresh, homemade foods (which I know is also hard), but I finally feel truely better (it only took a full year!).

I suggest always carrying "emergency" gluten-free foods on you, to make you resist the temptation of letting your guard down. At work, we have meetings where everyone brings home-baked cookies and stuff. When its not my turn to bake, I bring a chocolate bar for myself so that my coworkers don't feel like I'm being excluded. If you're eating out, I suggest go to places that have gluten-free menus, or seem to know what's good for the diet. Chances are, if they don't understand gluten, you'll likely get sick.

I hope you start to improve soon! Sometimes it takes a while to find what works for you.

[jeanzdyn]

I was diagnosed in November 2011, and I don't feel like it is that much of a struggle. I should say that I have been paying attention to my diet versus any symptoms I have -for many years already, so it is not new to me to 'tweak' my dietary consumption.

There are days when I do feel like it is a struggle, especially when I have to eat away from home. I try to always carry something that I can eat, at least to hold me for an hour or two. There were a few items I was eating before my diagnosis that just happen to not have gluten of any kind listed as ingredients; and some which I have emailed the manufacturer to learn that they are indeed gluten free.

I guess that is the biggest help to me in coping with the Celiac disease -- I have not had to make giant changes in my diet. I am still able to eat many of the things I loved before. I have also been really lucky in finding gluten free foods that do taste very good.

I am not a vegetarian, I don't eat nearly enough vegetables! The biggest things for me to stop eating were tortillas and Stouffer's entrees containing noodles, and noodles in general!!

I have found some Gluten Free pad thai noodles that are very good and also a brand of gluten free pizza crusts too. I have not located a gluten free substitute for the tortillas, just have not looked yet.

I guess coping with recently diagnosed Celiac's is different for each of us. It can depend a lot on your mind-set. All I know is that I feel better and I want to feel great, so I am keeping a positive additude for the most part.

[Aly1]

I think it would be easier if you didn't bother trying to explain to people. At work I would just say 'No thanks' or 'I'm not really a cake/pizza/whatever person, it doesn't do it for me', (yes, that is a lie, i really do want it! But whatever.) and leave it at that. It seems that explaining doesn't get anywhere so I don't really try anymore.

The past 6 years I've had to adjust to life in a wheelchair and I can definitely say that these things can do a number on you if you let them. It's definitely about how you choose to look at your situation. You can view it as a big limitation where you can't live the way you want to, or you can view it as 'wow I am so lucky to have not suffered undiagnosed for ages like some, and my health is in my control now" - previously it was only a matter of time before problems arose, and you avoided all that. In my case, I remember what it was like prior to the wheelchair, when I was in terrible pain from walking, taking more and more opiates Round the clock but still feeling pain, all but homebound because if it. The wheelchair got me out of the house and living again, and since I stopped stressing my legs, the pain is 99% gone. Could I sit around and think about how my 30's were devastated and I can't take my little girl ice skating or hike through the woods with my hubby - absolutely! But I would still be sitting in the damn chair, wouldn't I, but in that scenario I'd be miserable. No thanks.

My point is - do what you need to do to keep healthy and don't make a big deal out of having celiac. Just put one foot in front of the other and don't think more about it than you need to. It's just food. I've never understood why (some) people are so attached to it but maybe I'm built differently. Stick healthy food in, repeat as necessary. Get on with living and don't consider yourself as missing out or defective or any number of negative things you could dream up. Just go live your healthy life! That's my advice.

PS. Interesting note re Carnival cruises. I just came back from a Royal Caribbean one and they were *fantastic* in regards to both celiac and any other food intolerances. They took it very seriously and I felt better eating their food than I have at home! So don't count cruising out for your future, just give RC a try.