22 And A Celiac, Who Knew?

[Sunrise85]

Hi everyone! I just signed up to this forum after having read a bunch of your posts over the past few weeks. I am so happy that such a board exists, and reading everyone's thoughts has helped me cope tremendously after finding out about my celiacs only about 2 months ago. I thought I'd share my story, and would also love to hear everyone else's if you'd be willing to share! You all have inspired me, and it is terrific to have a place of support .

So here goes.. sorry it's so long!

Ups and Downs.

I realized that I was holing myself up. I'd go for days and weeks without wanting to leave my house, my room even. I would sit and cry for hours on end, day and night, thinking of all the mistakes I've made in the past, and how many ways I've ruined my perfectly good life. A peaceful nights sleep was something foriegn to me, as was the feeling of happiness. Then I would sit and think of what an awful person I was for having a wonderful family, supportive friends, and a comfortable lifestyle.. and still not being able to find contentment. I did not feel like I was being a good daughter, a good friend, a good anything. In fact, I had practically forgotten that there was anything good about me, and what it felt like to enjoy an accomplishment.

As I gradually withdrew from my life, I realized that I found it difficult to care about anything anymore. I no longer enjoyed spending time in public, or with even my closest friends, and found myself having to struggle harder and harder to keep my word on social commitments. I knew my friends were getting frustrated, and tired of hearing my excuses for not feeling well. Always having been an outgoing person that loves being around people, I berated myself even further as I continued to shut the world out. I found that even keeping up with basic hygiene like brushing my teeth and showering were becoming tedious tasks in my mind, and rarely wanted to get dressed.

So here I was, the girl that used to have so much going for her, that had so much spirit to offer the world. At my lowest moments, I wondered in despair, what happened to her? I wasn't always this way. I had dreams, talents,..and love. I had passion, loved to sing, dance, write, play piano, travel, sketch... My high school sweetheart (of 4 years) used to say that I always had a spark in my eye, a glow that made people want to be around me. I would look at photos from the past, and felt no connection to the girl I saw. At 22 years old, a senior in college, I sat in my eclectic bedroom, full of random junk unsorted for almost 2 years, and said enough is enough.

This was no life to lead. It was no life at all. I was constantly cold and wearing sweats.. a harsh contrast from my previous years of always having enjoyed dressing up. I couldn't sleep at night, and slept all day, with any little task having to take major effort. I felt tired all the time, became sick often, dizzy, had C, and my body often felt so sore and swollen it was like I had been beat up. I couldn't find a reason for any of this, as many days it would be difficult to do anything, both emotionally and physically. I continued to make excuses, to teachers, family, friends, everyone, so that I wouldn't have to get dressed and leave the house. I had seen doctors, who most of the time made me feel foolish or crazy for telling them of my symptoms. For the fatigue, the numb feeling, the swelling of my body, the hives (which began in my teen years), and the drastic weight gain of 30+ pounds within about 3 months last year that I had never been able to take off. I did attribute the weight gain to the periods when I was holing myself up in my room, partaking in seemingly uncontrollable binges night after night, with reckless abandonment of all care for my body and perpetuating the numbness and isolation of my state of being.

As far as my health history goes, I also ceased having a menstrual cycle for about a year and a half, and had never actually had a normal cycle in my life. I attributed that to having had an eating disorder in my younger teen years (from about 13-16), in which I ate an extreme low carb diet, had cycles of purging, and plummeted to 100 pounds at 5 ft 7. I saw an immunologist from the time I was 16 for the unusual and severe daily hive breakouts later on in high school (when I was driving and eating junk with friends more, as I always ate organic, unprocessed food at home), and was put on a daily dose of Zyrtec, that only made me more tired.

As a previously fit, active, and health-conscious person, doctors tested for my thyroid, and found nothing notable. Then, they tried asserting that I had depression and wanted to prescribe medication. Although I mulled that thought over, I had my doubts as I found that I did have better weeks when I felt dramatically different. These were the weeks when I was very conscious of my diet, eating mostly fruits, protein, and vegetables, and avoiding carbs. The uplift in my body, my digestive system, and my mood would be so incredible that I wondered if it was normal to have such extreme highs and lows. I mean, I knew eating healthily would make most people feel better, and eating loads of carbs and processed foods were not good... but to feel like a whole new person, inside and out? These 'good' weeks, my body all of a sudden began to work efficiently again. My digestive system became regular, the bloating and swelling stopped, my head was lifted, and I was bursting with energy. I couldn't stop smiling throughout my days, and nothing could get me down. Until without caution, I would slip into my bad weeks...holing myself up again. My weight fluctuated dramatically from week to week, by almost 10 pounds sometimes. I was exhausted.

Unknown to me at the time, these 'bad' weeks were triggered by consuming processed foods that contained gluten. It was as if all of a sudden, a monster was unleashed, and I no longer had control over my eating or my emotions. It would be as if a fog fell over me, like being physically awake but unable to make rational decisions or act as I usually did. I began to worry that I had something serious... if not depression, maybe bipolar disorder, or some other mental ailment. Towards the end of the semester, I couldn't handle feeling this way on top of the stress of finishing my classes and being active in my greek organization. I went home to my parents house one weekend, unable to handle being on campus anymore.. and had my first of a series of panic attacks. It would began with uncontrollable crying, then I would be unable to breathe. My first one was while driving home, and I had to pull over to the side of the road. I heaved, struggling to be able to breathe and trying not to black out. After regaining stability, I continued the drive and made it to my house, where I bursted hysterically with emotion to my worried family. Then, had another panic attack. I sat on the couch bent over, and my sister directed me to breathe into a paper bag, my parents watched anxiously, and I literally thought I would just stop breathing and die right there. They worried that I should have to be taken to the hospital, but after about 30 minutes, my breathing was able to be returned to normal. There were about 15 minutes or so that I couldn't really remember, and I 'woke up' unaware that so much time had passed.

With only about a month left in the semester, my family took action and supportively suggested I take a few weeks to sort this all out. At first I thought I was find, and could tough it out for this last period before graduation. After all, so much was going on at school that I didn't want to miss, not only classes but crucial social events with friends, etc. I didn't want to mysteriously disappear, and feared how I would explain my absence. So I tried to go back, and had another panic/crying attack halfway through the drive up. I pulled off the highway and sat in a church parking lot to calm myself down. I called my parents, and they wanted to pick me up immediately. I refused and wanted badly to just make it to school, to make it though my last of college. I was only at school for a few hours when I the panic attacks began again and I realized that this was something that I needed help for, that I couldn't deal with this all on my own.

I agreed to take 2 weeks off, with much difficulty in explaining to everyone at school. I began being tested more, and was unsure if I would be able to graduate on time. I searched for more doctors, and found one in my area that brought up the interesting proposition of celiac disease. I had never heard of it before, but tried a gluten-free diet for a few weeks as he had suggested. The improvement that I felt was astounding, similar to how I had felt when I was following a low-carb diet. We confirmed that testing may be unnecessary, as I would have to purposely ingest gluten for a period of time to get accurate results. After my short leave from school, I returned and cried tears of happiness in seeing all of my friends again. I felt like I had my life back.

Of course, it didn't end there, as I had many fumbles thus far in discovering gluten in 'hidden' places, and learning which ingredients to look out for in foods. At first it felt like being on a diet, and I didn't realize how strict I had to be until I recognized how physically and emotionally destructive it felt to be 'glutened'. Although I still have highs and lows, I think of how lucky I am to have discovered this and to have my family's support through the chaos over these past few years. As my body stabilizes, I am able to be a fitness-lover again, have the desire to socialize again, and am determined to work on regaining my confidence... and possibly even start wanting to date again? After having no interest in dating whatsoever at 22 after always having had a boyfriend, that was probably the biggest red flag!

And so my journey continuous, but looks promising as I am starting my new life after graduation and after finding strength in my body and soul from discovering this surprising but life-altering condition. I continue to be inspired by news of celiac awareness everyday, such as Elisabeth Hasselbecks recent spotlight on the View. I hope to continue to promote awareness myself, and am excited to learn of updated news and research every day. As far as my own condition, it's improving, but I still have my slips and bad days, which will no doubt be fewer and far between as I learn. Well, I hope you all had liked to hear my story, as I know I would love to hear about yours.

I look forward to hearing of your shared experiences. Thanks for reading!

-Rachel

[Sweetfudge]

Welcome Rachel! Isn't it great finding this place? I know I was ecstatic when I stumbled across it

You know, your story sounds a lot like mine. I was 22 when diagnosed, and had just gone through 3 years of being on and off antidepressants/anti-anxiety pills. When I got to college, I pretty much went through what you did, holing up in my dorm, losing contact with all my friends, and probably would have withered away completely if not for my wonderful boyfriend/soon-to-be-husband.

I'm so glad you were able to work with your doctor and figure out what was wrong. It took me a whole year of trying (after starting the gluten-free diet) to get off all my meds, and since then I've felt great. Granted, we all have our ups and downs, but that's life. A little bump here and there I hope you continue to improve!

[katifer]

Thanks for sharing! i was diagnosed in Nov. 2007 because my baby was really sick and they found that we both had Celiac. I have been trying to figure out my symptoms because i lived with it so long it is hard to know what was related and what wasn't----your story just helped me so much--honestly i have tears running down my cheeks because i really want to write my siblings a letter so that they know how serious this is and that they need to be tested--but i have had a hard time getting the 'symptoms' part clear. I am 27 and i have had this since i was 11. i always had horrible back pain and didnt even know i had all the other symptoms until i got to the place where you were at in college. thanks again for sharing!

[bethany001]

Thanks for your inspiring story!

I was recently diagnosed in April. In March I knew there was something wrong with me but everyone thought it was because my grandmother had just passed away. There were days I would just lay in bed and wonder how I would even take a shower and get dressed! My syptoms were full blown and I knew I had to get help. My biggest symptom is the anxiety/nervousness and panic attacks. I could not even go to work! Since finding out that I had Celiac my life has slowly changed. I know it will take a little while for me to get through this but it such a life change. My stomach symptoms are better but I am still struggeling with the anxiety. I know people say this takes a little while to get through this though.(I am also going to get tested this week to see if I have any other food allergies). I'm so glad you shared your story because it's nice to know other people are going through what you're going through. I have to admit it's been very scary and emotional but we'll all get through it!

Best of Luck

[FoxersArtist]

It feels sooo good to finally have an answer, doesn't it? Your symptoms sound so very, very similar to mine. It blows my mind to think that gluten could mess someone over so psycologically. I tried very hard to hold myself together and even tried as hard as I could to continue to do the things I love and see the people I love but after a while I realized that it was all slipping away from me. I didn't quite understand how depressed I was until I stopped eating gluten. Now I can be myself again. Now I can be silly and make jokes. I can think farther than half a sintence and I'm not stuttering. I too had lots od numbness and tingling, lots of cramping and swelling. I had the panic attacks and the fatigue. I truely thought I was dying but I couldn't just lay down. I have two kids under 2 years old and they were driving me into the ground - not to mention that my son also has celiac and had a whole world of behavioral problems that no one believed us about. Everything changed when I stopped the gluten, but most importantly my mood! I am only 25 yrs old and know what it feels like to be so young and feeling so old and worn down. I was diagnosed less than a month ago and praise God every day for finally giving me an answer...and not just any answer, this answer, because it's really a blessing. It's really a very manageable answer to my emotional and physical health issues...and looking back on my life, celiac has been the cause of nearly every health concern I have had. Wow! Thanks for sharing your story. It always feels good to hear other stories that are like mine....because then I know for sure that I really wasn't nuts and just making things up.

-Anna

[AliB]

I am soooo glad for you that you have managed to get this sorted out whilst you are still young. In a way, the fact that you had such extreme reactions to gluten has been a great indicator enabling you to come to a fairly quick solution.

I say quick, though it always seems like forever when you are going through it all! For some of us it has sadly been 'forever'! I am one of the ones who has taken years to figure out what is going on, and without any help from the Medical Profession (thank you very much!).

The first indicator for me was the fatigue. Going from being your typical tomboy - climbing trees, playing footie, always on the go, it hit like a ton of bricks when I was about 15. Annoyingly it was bad, but not bad enough for anyone to be that concerned, including me. My Mum went from moaning that I never stayed in to do my homework, to wondering why I never went out anywhere and was just stuck in my room all the time (now there's a thing - are teenagers just grumpy and insular because they are teenagers, or could there be another reason - gluten?). Another indicator was the unstable periods and awful PMS - the doctor put me on the pill when I was 16 to try and regulate them.

I was a skinny child, a plump teenager and am a fat adult. A bit of weight went on after I got married but the bulk piled on with my first pregnancy at 21. I never lost it and continued to add to it over the years, carting around for most of it up to 230lbs, which certainly didn't help the fatigue.

During my 20' and 30's I suffered a lot with hypos and often had digestive issues - back pain, and a very 'weary' stomach - debilitating me sometimes to the point that I would be so fatigued that I would feel like just laying down in the street, or wherever I happened to be, it would be a real effort to remain upright. Yet again though, although it was debilitating, it was not constant enough to impact enough on my life to warrant any major concern, and could easily be put down to my weight, or other things.

By the time I was 40 I was diabetic, that was followed swiftly by IBS and it wasn't till my diabetic medication was changed July last year that I started to experience severe stomach problems and my digestion eventually failed. It was the pale stools and diarrhea that pulled up the Celiac link and a lightbulb went on.

My Mum was put on a gluten-free diet just a few weeks before she died of multiple organ failure in July 2000 at the age of 64. As I researched Celiac, it was like piecing a jigsaw puzzle together! All the pieces suddenly made sense. All her health problems strongly indicated Celiac and obviously her doctor suspected it although it was way too little too late for her.

I suspect my Dad may also have been Celiac as he suffered with stomach problems and depression all his life - he even had 2 nervous breakdowns - one when he was 16 when his Dad died - I know now that Celiac often seems to be triggered out of 'hiding' by a trauma, either physical or emotional.

It's too late to help them, but I am just glad to have found it for myself and my own. None of us have displayed what are 'listed' as the 'normal' symptoms. Every one of us presents with totally different symptoms yet we are all Celiac/GI. I could just weep and weep for my parents and their struggles, but for myself too and all the years I battled with this gluten 'demon' without knowing of its existence.

My daughter has had issues like yours with depression, anxiety and panic attacks, neuroses, paranoia - I thought she had bipolar. She would be bouncing off the walls one minute and in the pit the next - sometimes up and down several times over the course of a day. She has been suicidal at times and acted totally out of character at others.

She is on St John's Wort (the AD drugs made her worse) which has helped enough that she can function better (I wonder if something in it helps her body cope better with the gluten??), and has started the gluten-free diet - not least because her eldest son who is 7 has had digestive issues and may also be Celiac and is on a gluten-free diet at the moment (I suspect his Dad might also be Celiac as he too has had stomach and digestive issues, depression and other things all his life). Where the heck it ends, I really don't know - the net just spreads out wider and wider everywhere I look!

I just so wish the Medical Profession would wake up and get their act together and realise that at least half the people who are sitting in their surgeries at any one time are there because of gluten!!!

I hope you are an inspiration to other young people with Celiac - I see so many posts from those who resent the diagnosis. Far better the 'life sentence' of a gluten-free diet, than the life sentence of poor and debilitating ill-health, or worse.

[ShayFL]

I am so happy for you Rachel.

We all have a story. I have no way of knowing what symptoms throughout my life were connected to what. Alcoholic father who committed suicide when I was 10. And a product of abuse (mental, physical and sexual), there is no question that trauma also played a roll in my life. But there were certainly other factors as well and I am betting gluten played a staring role.

I was a sick kid. Always with strep throat. Antibiotics where my normal after dinner mint. Prone to "stomach viruses". I was pale and skinny. But I plumped up in H.S. That is when the fatigue hit. I joke that I "slept" my way through high school. I slept as late as possible. Slept in class when I could. Slept at lunch hour. Slept in study hall. Napped when I got home. Woke up for dinner and a shower. Then back to bed. Weekends I slept till 1 or 2, then back to bed at 9. I remember when I was a Sophomore, my Mom saying I could stay up till 10:30 now. And my response was, "Why?"

Bulimic, weight gain, constant D, anxiety, depression, post-partum thyroiditis, vertigo, migraines, neuropathy..............

And here I am, not quite 2 months gluten-free. I can say the migraines are lessened considerably, the neuropathy is a wee bit better and I dont feel depressed. My most special doggie just died on Saturday (13 year old Great Dane) and even though I miss her and I cried a lot over the weekend, it didnt throw me in the "pit" like it normally would have.

Progress......

And I am anticipating so much more!!

S

[SchnauzerMom]

I'm self disagnosed. I've had "stomach problems" most of my life. But the last couple of years it has gotten much worse. I started getting acid stomach and bloating and gas. The doctor called it IBS. My husband found some information on the Internet about gluten intolerance. When I checked it out and started a gluten free diet the acid stomach has cleared up quite a bit. I still have to take a pill now and then but I was taking pills twice a day. The bloating and gas are pretty much gone and the stomach pain is pretty much gone. I can tell when I get some gluten because the pain in my stomach comes back, it's a stabbing pain. Every now and then I get tempted to go off the diet but all I have to do is remind myself what will happen if I do that and I get over the temptation. I feel much to good now to go back to gluten foods. I was a serious bread lover, actually all baked goods, cakes, pie, cookies, etc. Now I don't care about bread at all and I make my own cookies, etc.