I Am Recently Diagnosed

[Anja]

I'm very new to everything, I joined this site the other day, I had blood test taken last month and my biopsy was just confirmed 2 days ago. Took the doctors forever to figure it out, but I'm sure that's what happens with most people who have Celiac.

I may be only 20, but it's already taken a huge toll on my life, I'm highly sensitive with some less common symptoms, and I've lost jobs, friends, and just recently my fiance of 2 1/2 years a month ago because of all my health and behavior issues that I now realize can be associated, such as depression, break downs, and irritability.

I started my gluten-free diet, right after my biopsy, but just this last Thursday I had a pain killer that I didn't have the ingredient list for and ended up sick again so it's really frustrating and expensive to start all over again every time I accidentally ingest it. My doctor is sending me to a support group, but I have to reschedule since I'm getting my wisdom teeth out the day before and it'd be nice if I could actually ask some questions at the class.

I've already done some shopping for flours, cookbooks, and various foods I can eat. It takes forever to shop now because every time I read an ingredient list, there's usually 1/45 ingredients listed that I can't have. I mean honestly, I read a packet of rice chips, and nothing bad until I get to the bottom... "may contain traces of wheat".

I'd love all the advice and encouragement I can get from people who have had their life turned upside down due to celiac disease. I'm having a really hard time coping especially since my fiance kicked me out because he had no patience left for my depression... so any words of hope would be great right about now.

Thanks.

[quietmorning01]

I'm very new to everything, I joined this site the other day, I had blood test taken last month and my biopsy was just confirmed 2 days ago. Took the doctors forever to figure it out, but I'm sure that's what happens with most people who have Celiac.

I may be only 20, but it's already taken a huge toll on my life, I'm highly sensitive with some less common symptoms, and I've lost jobs, friends, and just recently my fiance of 2 1/2 years a month ago because of all my health and behavior issues that I now realize can be associated, such as depression, break downs, and irritability.

I started my gluten-free diet, right after my biopsy, but just this last Thursday I had a pain killer that I didn't have the ingredient list for and ended up sick again so it's really frustrating and expensive to start all over again every time I accidentally ingest it. My doctor is sending me to a support group, but I have to reschedule since I'm getting my wisdom teeth out the day before and it'd be nice if I could actually ask some questions at the class.

I've already done some shopping for flours, cookbooks, and various foods I can eat. It takes forever to shop now because every time I read an ingredient list, there's usually 1/45 ingredients listed that I can't have. I mean honestly, I read a packet of rice chips, and nothing bad until I get to the bottom... "may contain traces of wheat".

I'd love all the advice and encouragement I can get from people who have had their life turned upside down due to celiac disease. I'm having a really hard time coping especially since my fiance kicked me out because he had no patience left for my depression... so any words of hope would be great right about now.

Thanks.

Ah, Anja ((((((hugs you))))) I'm so sorry for what you've been through with this thing. Even if you hadn't been diagnosed with Cialic, depression is a serious issue that's so often misunderstood. It's a shame he didn't join you in the hunt for answers - some are better at being empathtic than others, and some have to go through some things themselves before they can grow enough TO have empathy.

I'm so glad that you finally got to the bottom of it, and can now do things for yourself. That's so empowering all in itself, especially as you see yourself happy again. I can honestly say that I lost several very serious relationships due to this thing prior to diagnosis. One thought I was a drug adict because I was always in so much pain. **sigh** Needless to say, I now have very little patience for people who assume. As you get healthier, you'll know more of what to look for in a future mate, that's the ONE thing that I consider really redeeming about this thing. I was quicker to rule people out who weren't supportive, patient, kind, who would join me in seeking to understand what was going on. Jewels are a hard thing to find, but well worth it when you dig one up.

I found out the hard way that the best way through grief is accepting new. . .it's a hard thing to do, but it, along with time and a lot of tears, it really helps to heal the heart.

I'm glad you're here, I just joined a few days ago - found this place to be very informative and very supportive, so far.

Keep working on it. . .I'm looking forward to getting to know you.

[quietmorning01]

Oh, one more thing: I so agree that it takes FOR-EV-AR to shop now. I started reading the labels from the bottom up. . .I get to the bad stuff a lot quicker that way. **wink**

[Anja]

Ah, Anja ((((((hugs you))))) I'm so sorry for what you've been through with this thing. Even if you hadn't been diagnosed with Cialic, depression is a serious issue that's so often misunderstood. It's a shame he didn't join you in the hunt for answers - some are better at being empathtic than others, and some have to go through some things themselves before they can grow enough TO have empathy.

I'm so glad that you finally got to the bottom of it, and can now do things for yourself. That's so empowering all in itself, especially as you see yourself happy again. I can honestly say that I lost several very serious relationships due to this thing prior to diagnosis. One thought I was a drug adict because I was always in so much pain. **sigh** Needless to say, I now have very little patience for people who assume. As you get healthier, you'll know more of what to look for in a future mate, that's the ONE thing that I consider really redeeming about this thing. I was quicker to rule people out who weren't supportive, patient, kind, who would join me in seeking to understand what was going on. Jewels are a hard thing to find, but well worth it when you dig one up.

I found out the hard way that the best way through grief is accepting new. . .it's a hard thing to do, but it, along with time and a lot of tears, it really helps to heal the heart.

I'm glad you're here, I just joined a few days ago - found this place to be very informative and very supportive, so far.

Keep working on it. . .I'm looking forward to getting to know you.

Thank you so much for your response, I'm very thankful to know there's so many people out there going through the same thing. I wish he had enough patience, I actually helped him through his parents divorce, and to see him not even stick around to see me get better is frustrating. I was one month away from being diagnosed and he just couldn't take it anymore I guess.

Sorry to hear you lost relationships too. It's ridiculous how many people are so quick to judge that you are faking illness, and that there is something mentally wrong with you. I literally got harassed by an ex-coworker at my old job because I quit due to health issues. She said there was nothing wrong with me and I needed to just suck it up and deal with the pain.

I guess I just can't wait until I'm seeing more results from the diet, I want to know how good it feels to be completely healthy for the first time in my life. It's just so hard to avoid gluten, all the cross contamination gets really frustrating after a while. Oh and thanks for the label advice, that will come in handy, I noticed the trace amounts seem to be at the bottom so it'd make more sense to read from the bottom lol.

Once again thanks a lot, it really helps to have people who understand.

[Maura]

Anja,

Hang in there! Things will get easier in time. I totally hear you about the grocery shopping thing. When I was diagnosed I had to leave my grocery store of 15 years and break in a whole new one. The first few times I went shopping it took hours but now it's a piece of cake (gluten free of course). It's very difficult to change but in the end it is really worth it.

In the beginning I can remember cleaning out my pantry and looking at all the labels and being astounded at the amount of items on my shelf that contained wheat or some kind of gluten. Everything from soups to sauces to dressings to soy sauce had forbidden ingredients. It was really difficult for me to find new products to replace the evil ones. This was a great exercise however because it really made me realize that sooooo many things were now off my list. But I made it a point to replace my favorite items with new yummy gluten free selections.

I also spent a fortune at the grocery store at first. But now ... things are much easier. I know my grocery store and can shop quickly. The spending has decreased too because now I know what I like and I know what I use.

Unfortunately we still have to read labels. This will never end because it is a really important part of managing this disease. In time you will get better at quickly picking out forbidden ingredients and quickly making good choices.

Sounds like you're on the right track ... hang in there .... things will get easier M

[ang1e0251]

Welcome to the Forum. I sorry it's been a tough time for you but when your sick or having troubles is when you find out who your real friends or future mates are.

About shopping, I reccomend starting out your first weeks with a very simple diet of meat, vegetable and fruits, rice and potatoes. Whole foods you can have confidence in. Then about the time you are getting really tired of them but are feeling much better, start branching out with one new thing per week. That way you won't be overwhelmed with the shopping and you will have a chance to start healing before eating new foods. Also many larger grocery stores now offer gluten-free shopping lists that are free for the downloading. This is a great guide for newbies.

Good luck and let us know how you progress.

[Bucsfan11]

Anja, first of all welcome to the forum! I can relate with you because I amm 22 and have lost friends and jobs due to celiac. I am really sorry for your run of bad luck, being a guy I cannot understand how he would leave you while you are already having such bad problems. Him leaving you is the last thing you need!! This forum will really help you out in your attempt to get info. It does take a long time for them to figure it out though. It took my doctors nearly two years. I hope you stay focused on the diet though because I accidently broke the diet the other day and I am still hurting from it! Goodluck!!

Sean.

[Anja]

Anja,

Hang in there! Things will get easier in time. I totally hear you about the grocery shopping thing. When I was diagnosed I had to leave my grocery store of 15 years and break in a whole new one. The first few times I went shopping it took hours but now it's a piece of cake (gluten free of course). It's very difficult to change but in the end it is really worth it.

In the beginning I can remember cleaning out my pantry and looking at all the labels and being astounded at the amount of items on my shelf that contained wheat or some kind of gluten. Everything from soups to sauces to dressings to soy sauce had forbidden ingredients. It was really difficult for me to find new products to replace the evil ones. This was a great exercise however because it really made me realize that sooooo many things were now off my list. But I made it a point to replace my favorite items with new yummy gluten free selections.

I also spent a fortune at the grocery store at first. But now ... things are much easier. I know my grocery store and can shop quickly. The spending has decreased too because now I know what I like and I know what I use.

Unfortunately we still have to read labels. This will never end because it is a really important part of managing this disease. In time you will get better at quickly picking out forbidden ingredients and quickly making good choices.

Sounds like you're on the right track ... hang in there .... things will get easier M

Thanks, it's a really hard adjustment. The only marked gluten-free foods in town are waffles and bread, so I always have to find a ride half an hour to the organic market when I need things like cereal, baking ingredients, and snacks. It's a hassle really, but I'm at least glad I'm somewhat close to a place with foods I can buy.

I know it'll get easier as time goes, but I guess it's hard to keep that mind set all the time when you're being frustrated with hundreds of labels lol.

Thanks for your response though

[Anja]

Welcome to the Forum. I sorry it's been a tough time for you but when your sick or having troubles is when you find out who your real friends or future mates are.

About shopping, I reccomend starting out your first weeks with a very simple diet of meat, vegetable and fruits, rice and potatoes. Whole foods you can have confidence in. Then about the time you are getting really tired of them but are feeling much better, start branching out with one new thing per week. That way you won't be overwhelmed with the shopping and you will have a chance to start healing before eating new foods. Also many larger grocery stores now offer gluten-free shopping lists that are free for the downloading. This is a great guide for newbies.

Good luck and let us know how you progress.

Thanks, yeah I've seen a few people who are really supportive of me at this time so it's been very helpful. One of my friends was actually starting her own diet, so now she's been having me over to cook gluten-free foods to try out and it's been a really neat experience for her as well.

I noticed information about taking multivitamins too with Celiac, is that a good way to start off as well? If you know anything about that, it would be a great help

I find though that trying gluten-free foods can sometimes be an adventure though, so I'm going to try and stay as positive about it as possible, even if bread will never taste the same again lol. Thank you for your advice on the whole foods as a start though, I think those would really help.

Thank you for your response.

[Anja]

Anja, first of all welcome to the forum! I can relate with you because I amm 22 and have lost friends and jobs due to celiac. I am really sorry for your run of bad luck, being a guy I cannot understand how he would leave you while you are already having such bad problems. Him leaving you is the last thing you need!! This forum will really help you out in your attempt to get info. It does take a long time for them to figure it out though. It took my doctors nearly two years. I hope you stay focused on the diet though because I accidently broke the diet the other day and I am still hurting from it! Goodluck!!

Sean.

Yeah seemed to be bad timing, especially to adjust to a new diet and deal with that stress. Sorry to hear you've had to lose friends and jobs too, it's rare to find people who stick around and have enough patience it seems. I think it took my doctors 4 years since I started developing other symptoms that actually pointed to me being sensitive to gluten. My physician kept sending me for the same tests over and over again and never cared about trying any further testing, he'd just send me out the door and tell me it was in my head. Finally I requested to see a real doctor, I waited 8 months on a list, and within one visit he'd sent me in for the tests and voila!

Good luck to you as well! Thank you for the response

[ang1e0251]

Have you been tested for vitamin deficiencies?

[quietmorning01]

Welcome to the Forum. I sorry it's been a tough time for you but when your sick or having troubles is when you find out who your real friends or future mates are.

About shopping, I reccomend starting out your first weeks with a very simple diet of meat, vegetable and fruits, rice and potatoes. Whole foods you can have confidence in. Then about the time you are getting really tired of them but are feeling much better, start branching out with one new thing per week. That way you won't be overwhelmed with the shopping and you will have a chance to start healing before eating new foods. Also many larger grocery stores now offer gluten-free shopping lists that are free for the downloading. This is a great guide for newbies.

Good luck and let us know how you progress.

I'm so glad I have time to actually READ this morning!! My husband and I have been talking about doing a food tolerance test for lactose, rice, corn, egg, gluten and fats - especially since my blood work came out negative. So far dinners cooked at home, no matter how simple they are - and gluten free, tend to really turn my stomach into a huge knot. Heh. . .I did BETTER this week eating at a restaraunt (gluten free - salmon, salad, no dressing, loaded potato skins). We're even thinking about doing pan cooking tests to see what pans need to get either extra attention or get pitched. (We JUST bought a very expensive Titanium non stick cook ware set. I think the frypan has issues. pft)

Your suggestion is a great place to start, thank you! I know this wasn't meant for me, but . . . hey, it might shed some light on what the fool is going on with my digestion.

[Anja]

Have you been tested for vitamin deficiencies?

Not yet, this is still all very new to me. Though I'm pretty sure I'm lacking a lot of nutrients since I've had anemic symptoms for a very long time.

[FarmCat]

QuietMorning,

May I suggest you add soy to the list of foods you test your tolerance of? I have issues with the entire legume family. I actually discovered that before I figured out I was gluten-intolerant.

[zeta-lilly]

Oh man, it sounds like you really are down in the dumps! Well look at it this way (this is the way that I look at it), you could've found this out when you were 40, or 60 or 80. But you've found out that you have celiac at 20. Now, I've had terrible depression and anxiety for as long as I can remember and since going gluten free I haven't had any at all. All these health problem that I've had went away. You will probably have the same experience that I've had. You're getting your entire life back, as many of your health problems will probably go away too!

As far as the eating, it's tough at first, but once you get the hang of it, it's like second nature. I really like to cook so it doesn't bother me that much making things from scratch instead of buying processed pre-packaged foods. I've discovered that Walmart does a great job at labeling their generic brand foods gluten-free. There are times when I see someone eating a doughnut and I get jealous, but for the most part I just feel lucky. I feel healthier than I've felt in pretty much my entire life. I think once you start to get used to the diet and your health starts improving you'll have a different outlook. Good luck to you!

[quietmorning01]

QuietMorning,

May I suggest you add soy to the list of foods you test your tolerance of? I have issues with the entire legume family. I actually discovered that before I figured out I was gluten-intolerant.

That's a good idea, thanks! My son is lactose and soy intolerant.

[Lisa79]

Hi

My name is Lisa I am 29 from Western Australia, Just diagnosed 2 weeks ago.

Its been years I have had problems, I was tested for Celiac 8 yrs ago but it was negative. Guess the test are much more accurate now days. I was relieved to finally be diagnosed with celiac disease. I suffer major headaches, anxiety, bloated to the extreme of looking 8 months pregnant. Modds, irregular periods, blurred vision and the list could go of forever.

I am starting to now feel better my tummy has been flatter than its ever been no bloating which is a god send by itself. I am on meds for Anxiety but the GP hopes to take me off them in 6 months. They are really helping me at the moment.

I am taking a few supplements, Vit B12, Calcium, Magnesium, a pro biotic, Vit C, and Zinc, I have also found Intestamine (health food shops) which helps repair the intestine. I don't plan on staying on expensive vitimins further down the track, it all gets so expensive, I hope a healthy diet and control of the celiac disease so I can absorb what I need. But its giving me a kick start.

I am finding I am eating lots of fruit and yoghurt for breaky, Salads for lunch and with rice meat and veggies for dinner or something. I think I have a problem with Nightshade foods also so its making it a little harder. I got some cookies and cake mixes from the supermarket which have been nice, but I try not to eat too many things like that but its nice to know you can have something nice.

I am seeing my GI today to discuss further test and join the support group etc.

Good Luck and hope you have a fast recovery, maybe in a couple of weeks you will feel like a new person.