How Did You Feel After Diagnosis?

[Kitt1027]

Hi there! I had the Celiac Panel blood tests run 2 days ago, but have not gotten results back. I know it may take a while...

Anyway, I'm feeling really nervous about it. Half of me hopes they are positive so I can have a definitive diagnosis and finally be able to make sense of all the symptoms over the years. But, half of me worries that I may feel an unexpected depression at the idea of having a life-long disease and being gluten-free forever (already on anti-depressants, so I'm used to it. lol) Anyway, I just want to throw the question out to you guys who have been diagnosed.

How did you feel when you actually got the definitive diagnosis?

Thanks! I will appreciate your feedback!

Kitt

[SEAliac]

My doctor told me they were running the TTG test, but I was really expecting all my lab results to be negative. The diagnosis was a surprise even to the doctor. They were thinking that I had diverticulosis based on my symptoms. So, for me it was good to have a diagnosis that seemed better to me than diverticulosis, but it was a shock. At first, I had some minor frustration (not really depression) about what I could and couldn't eat. The doctor and the nutritionist were next to no help at all. I found a great deal more comfort from online resources (this forum included!) which went into great detail on brands of food that would work.

It's definitely a big learning curve. Sometimes that curve seems too steep and other times it can be fun. I've had good experiences with restaurants that want to accomodate my diet and then there are some that I wouldn't dare try. I enjoy cooking so I've really liked changing recipes and trying new things. My husband was just diagnosed diabetic, so we've had a lot of nutrition changes this year. We're now eating the healthiest we ever had. (Don't get me wrong, I'm very glad that Stax are produced on a gluten-free production line. Salty snacks are the best!)

For me, the only depressing part is that it does take awhile for your body to heal. You can get the knack of the gluten-free diet, know you're eating correctly, and still have symptoms simply because your body is still sick. You will begin feeling better overall soon after you go gluten-free because the inflammation will begin to calm down (about week 3 for me), but it may be several months before you start noticing much change in symptoms. I'm still wondering what my new-normal will be once I've healed. Hang in there!

[aorona]

It has been 4 years since me and my 2 oldest sons diagnoses of celiac disease. At first I was in such shock because it was a simple blood test and it took 28 years of [me] feeling miserable and seeing dozens of doctors to get a diagnosis. I was mad that it took so long to get diagnosed and so many of my problems could have been avoided. At the same time I was relieved to finally find out what was making my kids so sick. I had taken my oldest son to 6 different doctors and they all told me it was nothing to worry about. They all had run their seperate tests, and could find nothing wrong. At the time I was diagnosed, I went away thinking "o.k. all I have to do is be on this diet and I will feel better. Sounds simple. How could all my problems and my kids problems be caused by one little thing, and why have I never heard of this disease before?" After doing lots of research on the web and reading tons, I began to understand the disease and the vast problems it causes. I did not think of the diet as I will never be able to eat real cake again or real bread for the rest of my life, but that this diet will help me and I will feel better by following the diet. You see, I was a very sick child, who then turned into a sicker teenager, who just dealt with being sick as an adult. I never knew what it was like to actually feel good until about 1 month into the diet. I finally started to feel better, although it did take about 2 years to completely heal. I consider it a blessing, in disguise, that we found out celiac was in my family. Since then, my mom and 2 sisters have gone gluten free and it has really helped them. If you do have celiac, don't get depressed about it. Soon, you will be thinking in a new light, literally because you will be able to focus, lol.

[Live2BWell]

Relieved, Annoyed, Grateful, Resentful, Shocked, Happy, Sad, Optimistic ... It was, very bittersweet

[ravenwoodglass]

Joyful that the pain was gone but incredibly

ANGRY

that it took so many painfilled years to diagnose me.

[Hummingbird4]

I was shocked and angry. Throw some disbelief in there, too. I had thought I had an ulcer. The diagnosis of a lifetime of avoiding gluten, and the explanation of just how difficult a diet it is to follow, made me very unhappy.

Since then, I've come to accept it, but I'm still not pleased.

[Beth in NC]

Personally, I was in complete and total shock. I didn't even think it was a possibility. I have been sick for a long time, but most of my symptoms aren't GI related so I had NO idea. I used to be a nurse so I KNEW, right there in the office that this was NOT going to be fun. I laughingly say that instead of my life flashing before my eyes, it was more like donuts, homemade whole wheat bread, cookies, etc that was flashing before my eyes! Stuff I would never be able to eat again. And then I went home and promptly had 3 slices of banana bread for lunch. I decided to go out with a bang. One last day of rebellion.

I'm still struggling, mainly because it isn't like I go on this diet and everything gets better really fast. I've probably had this for years and it may take years...gulp...to see much improvement. I am in pain every day with my fibromyalgia symptoms. It's hard to keep going sometimes...with the diet...when you still feel like crap. But this is the path that has been chosen for me and I need to walk down it with my head high and not be a complaining you-know-what about it everyday. I can still grieve what I've lost without being angry. Now when I get angry, it isn't at the disease, but at the ignorance of doctors or those around me.

I really want to get to where I am in a good place with this so that I can encourage others as they begin the path as well. I need to get a little further down the road though...in time...in time.

[psawyer]

I had mixed feelings.

I was very pleased to finally know what was causing all my health problems, and that I could fix it by changing my diet.

I was unhappy about how restricted my lifestyle would be on the gluten-free diet. That was in 2000--there are so many more gluten-free foods available today than then. No more quick burgers at McD or calling for delivered pizza (but see below).

I was frustrated that it took so long to figure it out, especially because the diagnosis only came after I brought information about celiac disease to my primary care physician at the time and insisted that I be tested for it.

Footnote: Today, calling out for pizza may be an option again. There is a large chain in my area, Pizza Pizza, who now offer a gluten-free crust, and identify which toppings are gluten-free. I haven't tried it yet, but there has been some positive information posted here. Must get my courage up. I was a very regular customer for years prior to diagnosis.

[Kitt1027]

Thank you all so much for your stories. They have really made me feel better...even if you aren't happy, I appreciate your honesty. That is real and this is real and I'm just trying to prepare myself.

I'm kind of wondering how I am going to feel if my tests come back negative. I have read on this forum that false negatives are common. I really tried to eat more gluten products for the week 1/2 before the test. Before that, I had tried going gluten free for a little over a week, but that was it. I am pretty positive that I still had enough gluten in me to bring back a real result. I will be kind of pissed if they are negative, because then I just have to keep wondering what the deal is with my body and mind.

Either way, I'm eating gluten-free, other than a couple slip ups. Right now, I'm not feeling much better because I've only been gluten-light for the past 4 days and before that was glutening up for the blood tests. So, my body is really confused and it's showing me its' confusion.

Thanks again for the support and I will definitely come back with my results when I finally get them!

Kitt

[dksart]

So completely freaking happy that I was not crazy!

My problems all came from Celiac disease, it was wonderful! Also, after being on the gluten-free diet for a while, you just may not need those anti-depressants anymore.

My arthritis, fibromyalgia, tingling and nerve pain, severe gut pain, IBS symptoms, constant D or C with horrible gas, fatigue, anemia, unexplained bruising, vertigo and dizziness, brain fog, short-term memory loss, mouth and stomach ulcers, migranes, insomnia, depression, anxiety and a host of other problems were all explained by a simple diagnosis, Celiac Disease. The most beautiful disease I could ever ask for.....all I ever wanted was to be able to stop taking so much medication after 15+ years of being undiagnosed and misdiagnosed.

Now I take suppliments (B-12, Cal-Mag-Vit D, etc.) to help with my malabsobtion issues and an occasional anti-inflammatory for my arthritis (damage done before) but that's about it!

[Nancym]

I didn't focus on what I couldn't have but focused on what I can have! I delved into new ways of cooking. I said to myself "poison" every time I saw something I couldn't have, like a fresh bagel. The reprogramming worked well. In fact, I have a very limited diet. I don't eat any grains or dairy products and I'm quite content with what I can eat because it is very tasty and healthy. Most people actually eat very limited diets in reality anyway.

And feeling healthy and not having all that pain is SO worth it!

[TrillumHunter]

Relieved and sane. I thought I had MS which is a more difficult diagnosis for me to imagine. Sane because, after a long time and lots of tests, there really was something wrong with me and it wasn't all in my head.

I have to add thankful now as well because my own children will never have to go through what I did.

[Kitt1027]

TrillumHunter:

I too was told by a dr. that "it could be Multiple Sclerosis." That was really great. Didn't freak me out at all! geeez.

I too have thought more recently that it could be MS, but then I started learning more about Celiac and thought, OMG, that sounds more like what I have. And really, I hope so, cause MS? Um, yeah, MUCH scarier!

Thank you all again. This is great.

Kitt

[HeartofGlass224]

When my bloodwork came back positive for a gluten allergy, I was annoyed....I had tried a gluten-free diet 3 years prior with no improvement, and the food was horrendous. I expected it to be something different, but this really irritated me. I was bad for awhile, went gluten-free, felt better, then went back to eating gluten for an endoscopy and capsule endoscopy.

The endoscopy was normal, so we did the capsule endoscopy, and when the doctor told me that there was clear evidence of definite Celiac Disease, I was RELIEVED!!!! Finally, an answer to all these years of pain!!!! And it also showed that my Crohn's was in remission, and all the time I thought that was causing my issues, and nothing could be found it was Celiac all along.....it was such a good feeling to have an answer and know I wasn't nuts!! Yes, I'd have to be gluten-free and never go back, but I had since discovered that the food had gotten a million times better, and I was just excited to finally get better!

Best of luck to you!!!

[LDJofDenver]

How did you feel when you actually got the definitive diagnosis?

I got the phone call, and it was my doctor's nurse, who proceeded to tell me that I tested positive for Celiac Disease. I had this combination of feelings, all at the same time -- one was, no way, you've got to be kidding me (even though I a son diagnosed in adulthood with celiac disease, and suspect my mother is an UNdiagnosed Celiac) -- but over all, I had this great feeling of relief. Like, my God, finally I know what the heck has been going on with me over the years -- roving pins and needles, and some other neuro things (to the extent that they did a brain MRI to rule out MS, followed by a cervical - neck - spine MRI looking for pinched nerves), volatile stomach and gut, strange rashes (some just on my knees), headaches and ocular migraines, shingles 3 times in past 2 years (does that say IMMUNE SYSTEM PROBLEM, or what!?!!), blood work, and blood work and more. Honestly, I'd often felt just like people on that Mystery Diagnosis show -- something's wrong, and wronger, and tests kept coming back normal. So, for me, the predominant feeling was definitely relief. Wow, I have an answer.

[lovegrov]

I was so ill I was in the hospital for 11 days. I was relieved they found something and that it wasn't something fatal (lymphoma was one possibility).

richard

[dixonpete]

My experience was 3 years of disability before figuring out what the issue was in late June of this year. I was nearly manic with joy because I had come to the conclusion that I would never be able to work or travel again because of uncontrollable diarrhea. Turned out it wasn't that cut and dried. It's been 9 weeks and I'm still healing and not fully mobile yet, but the trend is certainly upward.

Overall the discovery has been a huge plus. I just hope research and technology will make Celiac diagnosis far faster than it is today. There's years of suffering out there that needs to be curtailed. Routine genetic testing would be a really good first start.

[Jenny (AZ via TX)]

I was in total shock when I found out. I really didn't know what celiac was. I think it was kind of a fluke that they even ran the panel. Anyway, after the shock wore off, I thought this won't be so bad. That was before I read up on it and found gluten was in so many things. Then I was really depressed.

Now, after about 4 months, I'm doing OK. After you get over the initial learning curve, it really isn't that bad. I messed up the first 2 months and took some supplements that had gluten. Now I either call on each supplement or find them that say gluten free. The hardest part for me are social situations, but that has gotten a lot easier too. I used to feel embarassed when I went to restaurants and had to ask all of the questions. Now, I just don't care what anyone thinks. Also, I try to call ahead or go to restaurants with gluten-free menus.

It really does get easier as time goes by. I also feel much better too!