Share Your Diagnosis Story!

[MallysMama]

Hi all!! It's been a long time since I've been here! My life has gotten crazy! I had my second baby almost 2 months ago and having two kids is quite the challenge for me! However, I am doing great with being 100% gluten free! YEA!

I came back to this site to ask for some help from anyone willing! I am creating a small book of sorts as a personal project (though hoping it might someday get to be published). I would love to include some personal stories of people of different ages (or loved ones of those people) telling of your diagnosis and reaction to the new gluten-free diet you were about to start. Please only share with me if you don't mind me quoting you in my "book." I will only use the stories and quotes from this specific thread.

Thanks a ton!!

[Kaycee]

I think it is a good idea.

But some of these stories can be quite harrowing.

For me I slowly reached the conclusion of coeliac when I realised that it must be something I ate every day that was causing me so many stomach problems. I went along to the doctor, he previously had no inkling that I had problems, as I have never indicated to him that I had. I was worried it would be something a bit embarassing like worms. But my mother has had stomach problems as long as I could remember, so I thought it was a family trait. She was, and still is happy without any further investiagation, but me, I was not happy and I had just gotten married again, and was realising my health was going down hill pretty fast.

The doctor diagnosed me with a blood test and I guess the rest is history. Well it should be, but this is where the hard work starts.

I was 48 at the time, flipped out big time and my life then revolved around food and symptoms and glutenings. Not very condusive to life with family and partner. But they have been wonderful and have supported me. The only complaint my son had in those early days was that I kept repeating myself. I needed to talk, as it was like a big puzzle and I had to get to the bottom of it. I talked myself all out with my husband when we walked the dog. He would've loved to have talked about tractors, but I had to talk about me and the disease. It was very therapeutic, and I worked through it all. Six months non stop yakety yak about coeliac. Now I will let him talk about tractors an motorbikes, but not non stop.

I remember the first time I went grocery shopping and reading every lable I could find, after a while it got to me and I ran out of there double quick ready to bawl my eyes out. I now limit myself to only reading a handful of lables at a time.

I was very brave and noble when I attempted to go to Burger King in the early days and let the family eat, while I would sip on a coke. I was not hungry but it all got too much for me with the smells, and I ran out of the joint and sat in the car, and waited for them with tears streaming down my cheeks. That day I took off on my own and walked for a few hours. Walking has been my salvation at times.

One of the hardest things to get used to is social eating. Working in an environment where I have to produce the morning teas on occassions has helped me get used to it. But it is quite stressful at times, but now I realise everybody else overeats at functions, and I get to leave the table ready to get stuck into work again. I like that feeling, I do not like the overeating feeling. It is a pity life revolves around food so much, but I guess we have to eat, and there is no way of getting around that.

Cathy

[GeoffCJ]

Copied from another Thread:

For 11-12 years I've had symptoms. GI issues, then sleeping issues (light sleeper/insomnia), then my hands and feet going numb. Always felt tired. I tried to stay active, but hadn't had the energy I used to. Lots of stomach problems. I'd have frequent, sometimes painfull tingling/numbness in my hands and feet.

Still got along, but never felt right. My (now) wife was convinced I had Chronic Fatigue Syndrome or Epstein-Barr, my doctors told me it was Lactose Intollerence, IBS, and/or in my head. When we met, we used to run marathons and rock climb all the time. I was still kayaking, but never really had the drive to do other things that I used to enjoy so much. I've always been big, football player build, but I was gaining weight and was starting to look more like a lineman than a tackle.

Last fall, October-ish, I decided to do the South Beach diet. Just a week or ten days into the initial low-carb stage, I started feeling tons better. Remarkable. Night and day difference. There was a clear relationship, and I started doing some googling, and discovered a Celiac website. Holy Sh*t! Those symptoms were mine! I started experimenting with a gluten-free diet, but wasn't too knowledgable.

Presented all the data to my Dr. He agreed with my, and I got the blood test, which was negative, but he recommended the biopsy anyway. It showed clear damage, even after several months of gluten-free/lite. Around the same time I had the Enterolab results. I was convinced, and got really serious about avoiding Gluten.

That was January. I've made a few mistakes, but my wife and her family (we spend a lot of time there) have been great. The diet is pain in the ass, and I sometimes get down in social situations, or when Pizza commercials are on TV. And I think I'm starting to notice reactions to dairy, not sure if it's casein or Lactose yet, working on that.

But the good news-

* My GI issues are SOOOOOOOOOOOOOO much better.

* I've lost a few pounds. Still a long way to go, but progress.

* The frequency and severity of the painful tingling and numbness has greatly decreased.

* My sleep is so good I've had to buy a second alarm clock.

* I made the finals in the expert class in a recent kayak competition. My first time competing as an expert. Even just paddling with friends, people have been commenting on how much I've improved recently, and I've been paddling since I was 14!

* Energy levels are getting much better. As a student, athlete, husband, and entrepreneur, that means a lot to me.

* Starting to exercise more again, and it feels great. I'm buying a new (to me) racing bike this afternoon. I used to race in high school, but I'm 31 now. I've set my goals on a 100 mile race this year.

* I've rediscovered a childhood enjoyment of cooking. I hadn't taken the time to prepare anything beyond basic meals since high school, when I wanted a "good" meal, I'd just go out. Now I cook regularly, and dare I say it, well.

For any newbies wondering if the diet is worth it. The answer is a clear yes. And that doesn't even to take account all the damage/future risk that I'm not incurring.

Just thought I'd share.

Geoff

[Kyalesyin]

I think mine is probably gonna be quite short compared to the stories already here. Partially because its my wife, so I have only my own observations [she's not much of a social person] and partially because we caught her illness so soon.

She'd always had bad skin. Excema bad enough that we had to resort to ice packs to numb her hands down so she couldn't feel them itching, massive ammounts of dry, flaky psoriasis, all of that. She'd had insomnia ever since she was quite young, and a whole plethora of menstral problems. Suffice to say they were irregular, heavy, painful and slightly abnormal. She didn't eat brilliantly healthily- lots of bread and pasta, not huge on the fruits and vegetables. She was also moderately overweight, although interestingly, her waist/hip/bust ratio was 9 inches- she had a very narrow waist for her figure and the fat wasn't collecting the way it would in someone who was fat through sheer overindulgence. She's always struggled to lose weight.

When she was 17 [not long after we met] she slipped in her kitchen and managed to gash her shoulder open. Luckily I've never had an issue with blood- I patched it up just fine until we could get her to a hospital. It was quite a deep gash, and took weeks to heal. She always healed pretty slowly. Just after it healed, she got glandular fever severe enough that she spent several days in hospital. She was in for her 18 birthday and everything. We think it was this that was the 'trigger' for her celiac's to manifest, since before that although she'd had the bad skin, insomnia and weight issues, the other stuff didn't start to show until after that, and I mean literally right after.

We lived pretty much in the dark for the first year- she went off to university, and we blamed the weight gain and insomnia/crushing tiredness cycles on the student lifestyle- living in a dorm room and not being bothered to eat properly because cooking for one is dull. She started getting massive stomach/abdominal cramping all the time. Apparently, it felt like period cramping, but even with her freaky cycle it definitley wasn't.

We moved into a new place the next year, and her health got worse. Bad mood swings, more weight gain, permenantly low iron count despite my best efforts in the kitchen, she always looked ill and malnourished, she was sleeping 20 hours a day and still tired and unable to move, the cramps got worse. I was at my wits end. We nearly called off our engagement.

The doctors weren't all that helpful. University doctors have three default questions. What have you taken? How much have you drunk? Who have you slept with? Not very helpful. Towards the end though, simple because we were consistent, they did some thyroid tests [all over the place] and other blood tests for iron and such. Again, all over the place.

In the end, it was our chiropractor that said she was showing classic wheat-allergy signs, and recomended a private lab that would do the testing. It cost a lot an I was pretty skeptical about sending off a blood sample for testing, but her father picked up the bill and I was on the point of turning to witchcraft by then.

Lab results weren't brilliantly clear, [lots of numbers] but effectively said 'massive numbers of wheat and gluten *whateverthey'recalls*. Cut this out of your diet.

We actually ignored the results for a few months. The tantrums from her just weren't worth it. Her hormones were so all over the place that even bringing up the idea has her in huge 'I won't be able to eat anything I like ever again' tantrums. Then in passing I mentioned to an online friend of mine that she'd had this diagnosis. Guess what he suffered from....

He pointed us here, gave us massive ammounts of advice, and I think to be honest saved our marriage.

So, no biopsy or anything else here. Just a blood test that the doctors won't recognise or work to because it wasn't done by the NHS and some good advice from a friend. Either way, I don't need a doctor to tell me that its best we keep the gluten cut out. Her skin has cleared up, her mood swings are gone, the stomach cramps are gone, she's lost weight, she's sleeping normally... she's a lot more like the woman I met at a concert when we were still in our mid-teens.

Talk about taking matters into your own hands...

[els]

Hi all, I'm new to the forum.

I'm still going through the process of diagnosis, just had the blood tests last week, but I've suspected this for a VERY long time, and it runs in the family, apparently. When I talked to my doctor, he said his money is on this, too. Whatever the test comes back, I've decided to stick with the gluten free diet I started last week after the blood was taken.

I've had a lot of lethargy and anxiety attacks for years, extreme difficulty sleeping, abominable abdominal pain, the... errr... other problems with the bowels... menstrual problems (not to gross the guys out, but I'm having my first cycle without severe cramping right now in YEARS, and I think it must be the gluten free diet!)

When I started researching this further after discovering my aunt has celiac disease, other symptoms became apparent- like painful walking. Apparently you can lose the fat padding on your feet with this (???). Despite being overweight elsewhere (very upsetting, since I used to be VERY athletic) I can easily feel the bones in the bottoms of my feet- walking feels like I'm being stabbed from the inside out. Even gel insoles don't help with it. Exercise was extremely difficult until we got an exercycle that our pastor gave to us- that really helped with the walking problem. ( I wasn't just being lazy! I do 14 miles a day on the bike! But I had even been convinced myself that if I would only buck up and take my mind off things, I could push through and do it.)

I've also had pain in my leftside ribcage for YEARS now, and upmteen zillion scans and tests and who knows what trying to find out what it was- no answers. Just lots of tests we couldn't afford that told us NOTHING.

I think pregnancy must have been my stressor- I had two children, and some miscarriages. It was after the first miscarriage (which was also my first pregnancy) that the extreme fatigue etc started setting in. It's been perplexing, and my husband and I didn't know what to make of it. I'm NOT a lazy person, but over the years I've been doing less and less and getting overwhelmed with things easily.

I've dealt with people calling me a hypochondriac, complaining about how I never feel good, that I make up things so I don't have to go out and do things with people. It's been very, very hurtful, and I was feeling like the more I tried to explain myself, the more it sounded like excuses, and the more accusations came. My house is quite a mess, and some visitors I've had have said things about it. It's not because I am a slob, because I'm a neat freak, honestly, but because I simply am too tired and in too much pain to do much about it.

I'm hoping this will all change soon!

Now, good things...

Since going gluten free (and I know it's only been a little over a week...) I've been forced to eat more healthful foods, and be more conscious of what I am putting in and on my body. I lost 5 lbs already!!!

I'm starting to feel a little more pep and energy.

My arthritis pain has been cut in half, and I've made some small progress on the house.

I have a feeling things are only going to get better from here, and other things will be remedied in good time, too.

[Guest j_mommy]

My name is Jessie....I'm 24 and have had symptoms all my life. Everyone assumed I was lactose intolerant, like my father and left it at that.

This year I decided to bring it up to my regular dr....after all these symptoms were not abnormal for me so I have never brought it to his attention. He sent me to a GI specialist. This Dr, although not very knowledgable about the disease, always tests for it....sure enought my blood tests came back positive. My biopsy a month later also came back positive.

For the month between teh blood test and the biopsy was scary. After teh biopsy though I was ready to start my gluten-free diet and am soooo glad for it now. I feel alot better....as I'm new still I occassionally still have a few bad days but for teh most part am doing much better.

gluten-free is not as scary as I thought!

[alamaz]

One day my then boyfriend, now husband, and I were sitting in traffic driving out to his place for the weekend. Traffic was heavy but started moving and I was feeling very tense. All of the sudden I thought the car in the lane next to us was coming into our lane and was going to hit us. I reached over from the passenger seat and grabbed the steering wheel screaming at my boyfriend to watch out. We were traveling at maybe 30 m.p.h. so a collision while not desired certainly wouldn't have been horrific.

That was the highlight of my new found anxiety. I had recently quit my job because of the level of stress and anxiety I was experiencing. On top of lots of trips to the bathroom, anxiety, acne and night sweats I also started experiencing peripheral neuropathy in my hands. I was only 24 at the time and even at 24 every doctor and specialist I went to said there was nothing wrong with me, that I was NORMAL and would write a perscription for "the purple pill" or some steroid or my favorite were the multiple MRI's. After my wedding and moving into a new house I started getting debilitating migraine headaches. It was at that point that I knew I had to take my health into my own hands. I signed up to become a patient at a highly respected alternative health provider who happened to have his wellness clinic in my area. They ran a bunch of blood tests and said the only thing they could offer me was the diet plan. I felt hopeless but told myself I would give the diet a try. Within six months I felt like a new person except I still was having lots of trips to the bathroom. The diet was high in protein and virtually no grains not even rice. Once I started feeling better of course I started cheating on the diet. In November of 2006 right before Thanksgiving I wasn't feeling very good. I was extremely exhausted and nauseous. After dinner one night I had mild stomach pains. I went to bed and woke up at 2am to intense pain that doubled me over and put me near fainting. The intermittent pain would be followed by horrible painful bouts of "D". I struggled through the night and finally feel asleep around 630am. I went to the doctor again who told me it was probably gall stones. They sent me for a HIDA scan but of course, everything was NORMAL!

In December I found out I was pregnant. I was so excited. I bought all the books and had the plan in place when to tell the family. My Husband was out of town so I drove with my parents to Michigan for my nieces birthday party. Friday night I went to the bathroom and noticed I was spotting. Freaking out I confided in my sister who told me I should call my doctor in the morning and that sometimes spotting was normal. Well, far be it for me to have anything NORMAL happen to me! I miscarried that weekend and not only was it hard because my Husband was on the other side of the country but my entire family ended up knowing what happened because I had to go to the hospital.

Nothing was NORMAL anymore. I refused to believe that a person who was 28 could have nothing wrong with her but at the same time have more problems than her 92 year old great grandmother. At one low point I told my mom I didn't think I was going to live to see 40. After my miscarriage I started researching on my own. I was told they just "happen" but I was tired of hearing things that didn't lead to a diagnosis. Finally, I found celiac disease. Oddly enough I found an article about it on the website of that "highly respected" alternative health doctor. Immediately, I knew thats what it was. I made an appointment with my doctor who when I asked for the blood test made the comment "Well, we can if you want. That is the new hype word these days." I was laughing two days later when she called to tell me it was a positive result and a highly positive one at that. Of course, she didn't give me any direction on what to do next besides it being a "very strict" diet but I FINALLY had a diagnosis. I wasn't crazy, hypochondriac, imagining things, over reacting. Nope. I was certifiably a CELIAC.

I went from elated to pretty darned depressed and here I am today. Managing a lot better but I still have my days where I don't even want to get out of bed. Overall though I'm feeling so much better already (3 months gluten-free) that I can't believe I waited so long to demand that I feel NORMAL again. Now that I know what normal feels like and what I feel like when I eat the foods I shouldn't eat I don't ever want to feel that way again. NORMAL is a great feeling.

[Tim-n-VA]

Don't have a dramatic story but the lack of drama might be informative, depending on your audience, as it shows the health impact of asymptomatic celiac.

No classic symptoms. Occasionally I'd have slight nausea - enough to wake you up but no vomiting, etc.

Routine lab work as part of physicals, etc. showed fluctuation in liver function. That lead to a tenative diagnosis of non-alcohol cirrhosis but a screening test for celiac was ordered. Positive lab work and then a positive biopsy and here I am. A liver biopsy confirmed cirrhosis with celiac suspected as the cause since I drink very little.

All of that happened at age 48. After trying to live gluten-free (no intentional gluten consumed but I'm sure I've had accidental things) for about nine months the liver tests have been normal.

[sixtytwo]

Have a granddaughter who is now almost 9 that was diagnosed with severe celiac disease at age one. About four years ago this summer her mother told me that she thought with all the things I had going on I should get tested. I tested negative on the blood test, but through Enterolab I was gluten intolerant and also carry the gene. I have had migraine headaches for most of my adulthood, have a thyroid condiction and fibromyalgia......pretty classic, if you ask me. My mother, who just turned 89 and has had lots of digestive problems for MANY years, just got a positive diagnosis of celiac disease after getting a negative one sometime before that. We all figured that the negative result was probably wrong (as I did with mine) and she really wavered on the gluten-free diet plan, but now since she has been definitely diagnosed she is working very hard on staying on task. She is in the decline and most food does not interest her..........she has lost a lot of weight. Her favorite food in the world is McDonald's McGriddles or as she puts it........her no-no breakfast. She cheated and had it recently, but it gave her bad results so she says she isn't going to do that anymore. I feel bad as that is one of the only things she loves. She has D a lot even on the gluten-free diet, but I think after all these years her insides are ruined. Everyone's story is just a little different and very interesting. Barbara

[little d]

HI

My story is not an official diagnoses, just self diagnoses

I have not be diagnosed but have been tested and everything has come back negative. My sister aske me while we were visiting our mom, she just came from going to the bathroom i think for the 2nd time and I was getting frustrated with her at the time because her little girl was crying for her. I had noticed that when ever i saw her that she spent a lot of time there. I wasnt going to ask what is wrong, when she had asked me if I have ever heard of Celiacs, which I said no I knew I needed to listen. She asked me if I get D, Constipation, very tired after eating something like my favorite cereals, pastas, and such, heartburn and everything else that I do get. I said yes to all everything that she said. I told her that I have never been to the doctor for it because I didn't know why felt bad most of the time, I just always dealt with it.

I had always been a constipated little girl going days without trying to have a bowel movement, I would complaine like any child to my mom because it would hurt and I would have to force somthing to come out, and of course my mom would always ask when was the last time I had gone poo. I now ask the same of my little girl. My mom would then force me to eat the dreaded stewed prones, they taste just a digusting as it sounds. But that never really seemed to help that much. As I got older, the constipation continued and sometimes I would be d with gas pain, stomach might hurt a little too, really can't remember all my symptoms from way back then. I was also always on the very short stature side of everybody else took me years to catch up on height with all the other kids, I hated always being on the front row at class picture time.

My teenyears I still continuted with the c with occional D and then I noticed my energy level was always a little low, my parents would call me lazy because I always was tired and sat infront of the TV alot during the summer instead of playing with my friends in the neighborhood. My later teen years I can remember needing to go when I was out by myself I had to get something from the grocery store for my mom, I think I may have been maybe 19 at the time when my first I have to rush to the bathroom fast, I couldn't use the bathroom there because I was broken, I finished checking out and started home when It hit hard, Mc Donalds was in site, parked the car went inside, well it was not a pretty picuture, I was mortified that I would have to pass people leaving to resturatent, I'll let your imagination run with that one.

I continued on with life not knowing that something was wrong with me never told my mom that somthning was going on. My mom and grandma both by this time had gall bladder surgery, Mom had stones severyly when i was little, and grandma had her gall bladder taken out she I think had a lot o issues going on gastric wise, but she was the type of woman who never went to the doctor and didn't talk about her health issues with us.

Anyway, In my 20's I had a lot more gastric issues going on a little more intense, meet my husband, had a baby, and after she was born I had noticed a lot more going on with my body. Like any pragnat woman who has heartburn knew it was normal so I thought. Was glad to not to have heartburn anymore, until one day it came back along with alot more that I had noticed, like the stomach burn during and after eating, nausea almost to the point of vomiting, getting headaches alot more, some could have been migraines, and everything else. More brainfrog.

I finally went to my family doc and told him what was going on told him about celiac disease he said never heard of it, Got my referal to my GI Doc, he told me that If i had anything he would want me to have IBS, "You can at least control that with medicine" I told him no NOT going to control my body with medicne, So I go tested everything was negative probley because i was eating Gluten free for 3 months. So now I am just going to order my test through Enterolab, I started the ordering process but now I just need to wait.

That is my story sorry it was so long,

Donna

[cyberprof]

Interesting question.

I was diagnosed after having stomach pains, heartburn - both of which were new symptoms- starting in November and December 2006. Meds didn't help. My internist set me up for a endoscopy for an ulcer: the GI took biopsies and found evidence of inflamation but saw no blunting. So I had a quick diagnosis, comparatively.

I think I had major symptoms for two years, but have had other symptoms for 10-20 years. My major symptoms (20-20 hindsight) were bloating, anxiety, low-level depression, mouth ulcers (monthly or more often), D (often explosive and immeditely after meals), really bad gas, weird intestinal noises and pain, brain-fog, pain all over -especially joints, and tiredness. I'd wake up in the morning feeling like I'd been run over by a truck. I'm overweight and feel "malnorished" but don't fit the underweight celiac profile.

My internist isn't very good and I'm going to find another one. I went to her in 2005 and said that I had bloating and was afraid I had ovarian cancer. She did some blood work for that but when that was negative (and all my bloodwork except cholesteral was normal), she didn't ask any other questions or wonder why I was feeling bad. But then, neither did I.

I thought that the symptoms were from a combo of my job/life stress, or from lack of sleep, or not eating well, or doing too much/working too hard, or from getting older (48) or from menopause. It's true that I don't get enough sleep and I'm stressed. I work at an executive-level job, teach college classes in addition, have two teenagers and a spouse, have a 1 hour commute each way. I'm also a volunteer and I put a lot of effort into my kids. I also left a stressful job in November and got a new one. So when I told my doc I was stressed, she attributed all my problems to that and didn't even try to find out if there was really something wrong with me.

My physical reaction to the diet was immediate. In 48 hours I felt like a new person; some of that may have been relief because I was beginning to worry I had something like heart disease or cancer. A disease that needs no drugs and can be controlled by diet- GREAT! Lots of energy, no stomach rumbles or tummy troubles. Arthritis pain that I'd had for 20 years - gone! No brain-fog.

But then reality set in. Pizza and pasta were my favorite foods. It's a trial and error process learning to avoid gluten. And with business dinners and lunches and eating at work, I have to be much more careful than someone who doesn't eat away from home a lot. I've gotten gluten from microwaves, tupperware/cutting boards (before I threw it all away), envelopes (licking without thinking!), restaurant CC and my "forgetting" to read an ingredient list. Within a month of going gluten-free, I found that I reacted to the smallest speck of gluten.

I'm hoping to get better health over the next year through diet, exercise, vitamins, extra sleep and of course- avoiding gluten.

~Laura

Hi all!! It's been a long time since I've been here! My life has gotten crazy! I had my second baby almost 2 months ago and having two kids is quite the challenge for me! However, I am doing great with being 100% gluten free! YEA!

I came back to this site to ask for some help from anyone willing! I am creating a small book of sorts as a personal project (though hoping it might someday get to be published). I would love to include some personal stories of people of different ages (or loved ones of those people) telling of your diagnosis and reaction to the new gluten-free diet you were about to start. Please only share with me if you don't mind me quoting you in my "book." I will only use the stories and quotes from this specific thread.

Thanks a ton!!

[horsegirl]

Hello,

I'm new to all of this "forum" stuff, but wanted to share my story in hopes of getting some advice or suggestions on how to proceed with my health problemsas they relate to gluten intolerance.

I am a 35 year old woman, & I first developed symptoms of arthritis & soft tissue problems at least 15 years ago, when I had back surgery for herniated discs. I learned to live with pain, & overall have functioned quite well. I work full time as a licensed child psychotherapist, have successfully had 1 pregnancy 4 years ago, & am happily married. I have always had various physical & emotional "complaints" including arthritis (joint stiffness, limited range of motion, pain), as well as endometriosis, carpal tunnel syndrome/surgery, headaches, TMJ pain, & OCD (obsessive compulsive disorder).

I also had variable gastrointestinal problems such as fluctuating between diarrhea & constipation, which I blamed on a not-so-healthy diet; I also was quite overweight. I joined Weight Watchers in 9/05 & recently became a Lifetime member after losing 65 pounds.

In April 2006, I had an syncopal episode at work in which I lost consciousness completely for a few minutes & crashed into a wall. Paramedics were called & I went to the E.R., where I was told I was slightly dehydrated & had low blood sugar.

I was told it was basically a "vaso-vagal syncopal episode" & sent on my way. I followed up with my primary doc, who did lab work. The SED rate was elevated, but it has been for years. I insisted on a rheumatological panel since I've had joint & soft tissue issues for years, & these generally were normal, with slightly elevated RA level. I developed hip pain & was diagnosed with bursitis caused from the fall when I passed out. I had physical therapy & a cortisone injection, which helped.

However, I had ongoing soft tissue pain throughout all 4 quadrants of my body, & severe fatigue all day, as well as moderate insomnia every day for many months. I insisted on seeing a rheumatologist, who ordered whole-body x-rays. These showed osteoarthritis in both feet, mild hip dysplasia, moderate OA of all 3 major regions of the spine, levoscoliosis, OA of both hands/all fingers, & possible DISH syndrome (diffuse ideopathic skeletal hyperostosis). He also said I qualified for a diagnosis of fibromyalgia because of the pattern of pain/tender points & fatigue. He told me to start conditioning exercises like Pilates, & to use a stationery bike for

a slow build up of cardio. However, I was in so much pain & so fatigued that any exercise program was out of the question. For the fibromyalgia, he told me "I could give you Morphine but you'd still be in pain", & told me basically to learn to deal with it myself.

I was depressed for a couple of weeks afterwards, but decided not to let this be a "life sentence" at 35 years old!

I did lots of research, & decided to see if there was a dietary component to my conditions. I first eliminated dairy/casein for 2 weeks, but noticed little improvement, & no worsening of symptoms when I reintroduced it. I then eliminated gluten, & after 10-14 days had a HUGE improvement - going from pain of 9/10 to 2/10, & the quality of my sleep improved dramatically too. My depression also seemed to lift considerably, & I was less anxious.

I knew I was on to something, & continued to be gluten free for about 1 month. I then did a "challenge" & introduced gluten via soy sauce (one night) & a slice of toast the next day. A day later, the pain was so severe I could barely stand it, & my sleep disturbance returned. It took a whole week of being gluten free again to see a return to better health.

Since then, I occasionally have mild "flare ups" of the pain, which I blame on accidental exposure to gluten (or possibly to other food intolerances I've yet to learn about).

So, I clearly know I'm gluten intolerant, & I've been gluten free now since January 2007. I have several books on the subject & have just subscribed to this forum too.

I have several questions:

1). Is there a way to have serological testing to determine if I'm gluten intolerant or have celiac disease since I've been gluten free for 4-5 months now?

2). Is there another way to know if I have celiac disease? (I also want to know for my daughter's sake, genetically).

3). If I don't have celiac disease now, could the gluten intolerance develop into it later if I have accidental "glutination"? (for example, I still take the communion wafer at church).

4). Should I seek a specialist for my care? If so, what type of doctor? Do you know of anyone in the Sacramento, CA area?

Thanks to all of you for any assistance or advice you might have. The link between fibromyalgia & gluten intolerance seems pretty strong, & I question whether I even DO have fibromyalgia, or just atypical celiac disease!

[cyberprof]

Hi all, I'm new to the forum.

When I started researching this further after discovering my aunt has celiac disease, other symptoms became apparent- like painful walking. Apparently you can lose the fat padding on your feet with this (???). Despite being overweight elsewhere (very upsetting, since I used to be VERY athletic) I can easily feel the bones in the bottoms of my feet- walking feels like I'm being stabbed from the inside out. Even gel insoles don't help with it.

Who knew? I had foot pain - diagnosed as plantar fasciitis- off and on for years. I got it this year in January, by end of February it was gone. I've never gotten rid of it that fast. I never even thought about it until today, it disappeared when I went gluten-free. Amazing! Thanks ELS!

~Laura

[little d]

HI

horsegirl hello and welcome to the board. My name is Donna, I am not an expert but to me it sound like if the diet is helping then that is half of your battle. The other half is getting diagnosed especailly for your daughter. I am not offically diagnosed, because all my testing that I had done all in my opinion were false negatives, at the time I was Gluten free for 3 months and then I was tested. If I can offer some advise this would be it.

If your going to get tested do it now if feasable, the longer you wait while you are gluten free could and might give you a false negative.

1. You can go to the Gastro doctor and ask for a Celiac panel but just to let you know if you have been on a strick diet for more than 3 months that could cause a false negative which is my case.

2. Im sure that you have seen on this site that people have used a lab called Enterolab it is noninvasive and you could test your daughter as well no needles involved, they test only your stool sounds a little grose but they can test your stool to see how sensitive you are to gluten, But depending on where you live and if the doctors accept these results you can order the complete test which is expensive and you insurance may not cover the costs. But this will tell you but not give an official diagnosis, unfortunately the GI wants to do that himself and my not regonize the results from Enterolab.

3. I am not an expert on this one I'm still fairly new but I know that someone else like MommaGoose or Carla or nantize sorry on the spelling, or someone else who have been a lot longer than me and who has there handy dandy researching skill at hand can tell you the scoop on this.

4. You I would think need to go get a referal depending on your insurance, but a Gastrointerologist would be go to. and Maybe an Internist might be able to help as well. But when you call for an appointment ask to see if the doctor knows and or the staff knows anything about Celiacs/Gluten intolerance.

I hope that I have helped you some others I know can help you a lot more.

Right Mamma Goose, you just gotta love her..

Donna

[MallysMama]

Thanks, so far, for your responses! All I can say is - wow! It makes me glad I can't remember my diagnosis!

I have a few specific questions I was hoping someone might want to reply to (again - just a reminder - by replying, you give me "permission" to quote you in my project).

I want to know about first experiences going grocery shopping after being diagnosed.

What did you do with all the food in your kitchen after being diagnosed?

Tell about the first time you went to eat at a restaurant (and which one) after going gluten-free

If you have kids with Celiac - how did you handle sending them to school after being diagnosed?

What kind of frustrations do you have with cooking gluten-free?

What one product do you wish you could still eat?

Thanks!! Feel free to respond to all the questions or just one! I really appreciate you sharing your stories and wisdom!

[geeze]

Hi all!! It's been a long time since I've been here! My life has gotten crazy! I had my second baby almost 2 months ago and having two kids is quite the challenge for me! However, I am doing great with being 100% gluten free! YEA!

I came back to this site to ask for some help from anyone willing! I am creating a small book of sorts as a personal project (though hoping it might someday get to be published). I would love to include some personal stories of people of different ages (or loved ones of those people) telling of your diagnosis and reaction to the new gluten-free diet you were about to start. Please only share with me if you don't mind me quoting you in my "book." I will only use the stories and quotes from this specific thread.

Thanks a ton!!

[Kellygirl]

Thanks, so far, for your responses! All I can say is - wow! It makes me glad I can't remember my diagnosis!

I have a few specific questions I was hoping someone might want to reply to (again - just a reminder - by replying, you give me "permission" to quote you in my project).

I want to know about first experiences going grocery shopping after being diagnosed.

What did you do with all the food in your kitchen after being diagnosed?

Tell about the first time you went to eat at a restaurant (and which one) after going gluten-free

If you have kids with Celiac - how did you handle sending them to school after being diagnosed?

What kind of frustrations do you have with cooking gluten-free?

What one product do you wish you could still eat?

Thanks!! Feel free to respond to all the questions or just one! I really appreciate you sharing your stories and wisdom!

Hi,

My Name is Kelly, I was officially diagnosed with this disease in April of this year when my biopsy came back saying positive for Celiac. If you want to know more about my history you can e-mail me and I will give you the full scoop.

As far as your answers go I can probably help you out. I am a vegetarian and my one Nephew has a severe peanut allergy and the both of us are Lactose intolerant.

I am a wiz in the Kitchen and LOVE to bake. My nephew sleeps over at least once a week so I have to be careful of what I have in the house. I have actually noticed a difference in myself since quiting the peanut butter but that isn't important.

When I decided to gut the house I did just that. I took ALL the food EVERYTHING even gluten free stuff like butter - could have used a knife in it! I might have used that sugar scoop in the flour last time I baked. Called my NORMAL sister with NO Allergies except Kiwi (WEIRD) and gave here all the stuff. Now with an empty kitchen I decided to SCRUB - everything. It was like when you move out for the first time and you need to go on a grocery shop.

It took about 2 months to get my kitchen back to full cooking potential, but the first grocery shop was quite literally a pain in the ass. You automatically buy things that are NOT free of the things you cannot eat. Also if you are like me and there is a sale on you over buy. I bought 15 boxes of rice crackers because they were on sale. I have only eaten two boxes and I did this grocery shop 2 months ago.

As far as snacks go I usually try to stick to farmer friendly stuff. I live for fresh fruits and vegetables. It seems as long as that is the only thing around to snack I don't eat much else.

I have started to bake gluten-free, lactose-free, peanut-free muffins and cookies and my nephew's love them. They are also low fat, the nephew that loves them the most is not allergic to anything and he takes them to school in his lunch everyday.

I find I have adjusted pretty well to the gluten-free diet but every now and again I crave the soft flour wraps. The one's you use to wrap a burrito. I broke down last week and let myself eat whatever I wanted. I have been on this diet Hard Core for 2 months, I figured one binge day wouldn't hurt. I was WRONG - it seems my body hates gluten even more now that it hasn't had it in some time. I was violently sick. I will think twice before I eat toast again. Starting off I found baking to be frustrating, some muffins would taste great but they didn't rise right and they were a bit spongey. Other times I would find they looked perfect and had the right texture but they tasted like crap. The first time I lucked out I didn't measure ANYTHING I was fed up with measuring stuff only to find out that the muffins were a huge disappointment, I just put in a little this and a little that. When I opened the oven and they looked good I figured what the heck try one, they tasted great. I was so thrilled I called everyone I know and let them know how sucessful I was. They could have cared less, but I was just so DAMN happy - So happy infact I remade the recipe an hour later just to make sure I got all the ingredients right and I wrote them down so I wouldn't forget the next time.

Anyway I am doing OK, my new cooking ingredient that I seem to be adding to everything lately is Millet. Found out they are high in fibre the hard way.

Have fun with the book.

Kelly

[geeze]

Hi, I am very new to this and perhaps the oldest celiac I have read about. At the age of 68 I was diagnosed by blood test on April 25, 2007. My story: I have been extraordinarily healthy until the last 7 years or so. I was diagnosed with gallbladder disease and had a cholecystectomy in about 1999. At mamogram in 2001 was found to have ductal carcinoma in situ in the right breast and opted to have bilateral radical mastectomy. Recovered from both of these surgeries very quickly and continued a very active life.

For the last several years (don't really know how long) I have had nuisance abdominal-related problems - diarrhea sometimes, constipation sometimes, growling and rumbling a lot of the time, etc. Within the past year I have noticed more and more abdominal cramping mostly related to after eating cereal for breakfast. I self-diagnosed many different things but never did anything about it because I related it mostly to old age and figured everybody must have the same thing. I also had experienced what I diagnosed as ringworm on my right buttocks which would happen maybe 3-4 times a year. It would come on fairly suddenly, itch like crazy and leave after 3-4 days. It was never there when I saw my primary care and not important enough to mention when I did see her.

Last June I had major eye surgery which necessitated a change to a fairly quiet and inactive life style and gain of weight. I have not recovered from that now almost a year later. (I now wonder if celiac disease plays any role in this healing).

In early April of this year, I developed a rash on my left elbow and right knee which itched terribly. Out of boredom and maybe frustration one day I typed into a Google search line "dermatitis rt knee and left elbow." Oh my God, it returned with "dermatitis herpetiformis" and also read "may also have symptoms such as abdominal bloating, feeling full, cramping, on and on and on. All of this described what I had been experiencing much better than I could. I read a lot enough to know I should not change my diet until after a blood test for celiac disease.

My doctor's appointment was less than 2 weeks away. I told her basically what I have written above. She was very scheptical because I am 40-50 pounds overweight and certainly do not appear malnourished. However, she did agree to get a blood test. On April 25, 2007 she called me and was astonished to report the test was positive for celiac disease and referred me to a dietician.

That is where we are now. I am on a gluten free diet and what I know about this I have learned on my own through the internet and websites such as this one. I personally know of no other one with this disease or at least no one who has been diagnosed. Sometimes I feel like I talk about it too much and that others cannot possibly understand and simply must get tired of hearing it.

I would very much appreciate info from anyone. In particularly I would like to know if there is anything I can do proactively to help the small bowel heal. I will respond if I can figure out how. I do know how to type but am just barely computer literate and frequently lose more data than I manage to send.

Would be glad to help in anyway I can. Do you know of other senior citizens diagnosed so late in life?

[Betty in Texas]

Hello I'm Betty from Texas and here is my story,I was diagnosed Feb 3 2003 at 53 yr old by Dr Banker in Humble Texas I was very sick had been for a bout a month this time could't get over what I though was the flue every time I ate something I would fill like I had a bad hangover. Well I just tryed to get better by my self I don't go to drs much but I started bleeding some where internaly and so I got scared I thought I had cancer are something. I went to the G. I my daughter had gone to for years for her colitis. And he put me right in for the scope to find out where the blood was coming from, and when I was waking up he ask me if I had ever had hepatitis coarse I said no my brother had it once and I had to take a shot for it. Well he said my liver enzines were really high he says we going to run some more blood work on you so they did it right then and they took several biopsy when they did the scope. He calls me at 7 am 3 days later scares the hell out of me he said Betty I need you in my office first thing this morning I need to talk to you about what we found . He said don't worry it is not cancer but it is to intense to explain on the phone. I called my Husband just crying telling what the dr said he said you need me to go with you , I said no did't want him to take off work I can go by my self I will be fine . So I seen Dr Banker and he starts off saying you have chronic gastric mild esoghagitis I thought to my self well that's not that bad I can handel that . Then he come off with and there is something else wrong with you and I know I must have look white as a ghost he said you have celiac deesease. He said have you ever heard of this I said No I sure haven't he said it not a death sentence you have to treat it with gluten free diet for the rest of your life . He hug me he knew I was scared and he said you can't do this alone you need a support group , and get some good books and learn about it and call me if you need to talk about it. So I been learning every since and doing much much better Thank you for your time

[Guest maybe I have celiac]

Hi! I am a 33 year old male and I have not been diagnosed by a doctor with Celiac, but I suspect that I have a grain intolerance. My story is a little different. I have been depressed as long as I can remember. My dad's side of the family has anxiety, depression issues and it was always something that was supposedly only medication could fix. I have been on three rounds of anti-depressants, currently Celexa. I was kicked out of the house by my wife as my mood was getting worse and worse. I am in the process of being divorced. Slowly I have suspected certain foods to cause my behaviors. I quit all caffeine and found out the past month that grains might be causing my odd behaviors. I noticed that after I drank beer, I would be depressed for days after. I cut that out, but was still depressed. After doing numerous searches I came across this article a month ago (please read it):

Open Original Shared Link

I think that the article is one of those LITTLE things that is going to change my life. The more reading I did I came across Celiac. I heard of it but didnt know what it was. My dad's college friend had this and it cause stomach cancer in him. The more I read the more things seem to make sense. I had a BM 5 times a day, stomach protruded, lethargic, depressed, moody. Although my symptoms arent nearly as severe physically as others, I am surprise I am still alive with all of the emotional pain that I have been through.

I am thinking of ordering the Entero kit to confirm this as it seems the blood tests and biopsies are hit or miss. I am hoping to kick the meds and fix my marriage, although that is a slim to none probability.

Regards,

Jim

[SunnyDyRain]

I am relatively new to the diagnosis. Though I believe I have been suffering for years.

My junior year in high school I came down with Mononucleosis, It took me about a month and a half to recover (not abnormally long). After that, I seemed prone to get diarrhea quite often. It started out here and there, nothing too alarming. I was a teen I wasn't eating right, I was drinking on weekends, sleeping too much all the time. My doc diagnosed me with Ebsien Barr or Chronic Fatigue syndrome after months of the Mono being gone, and still over tired. I delt with this, and when I entered college I found things got worse, I devloped anxiety over the shared bathrooms and the close quarters. I scoped out the most private bathrooms on campus. I still was only having D 2-3 times a week, but I found it very stressful to find privacy. After the first year away, I transfered to a school closer to home, and moved home. This choice was not baised soley on my bathroom issues, but the stress and anxiety I felt from that and other living away from home issues compounded into the transfer.

Over the next 4 years in college, I went through many changes, though the D settled down a bit, it never went away. I was still really tired, diagnosed with depression and possible thyroid problems. In 2004 my doctor diagnosed me with High BP, and also was worried about my elevated protien levels in my blood. She let it go, wanted me to come back be retested in a year. A Year later, my blood protiens are still high. She sent me to a Hematologist, who diagnosed me with Dermatomyositis. This didn't really seem to fit other than a rash and random pain all over my body that appears then disppears. He sent me to rhumatologist, the RH told me that he didn't think it was DM, but Lupus. He tested me for a million things(I assume celiac isn't one or he should have diagnosed me), sent me to Dermatologist for my face (I have had a red blochy face my entire life, felt it was my complextion not something that is wrong with me). All tests came back negitive or inconclusive. That was dec 2005.

January 2006, I up and moved, no job, no health insurance. I finally got a job and met a co-worker with Celiac. She told me about the disease and about DH and how she miscarried and just had a horrible time until she was diagnosed. She was finally pregnant again and was doing great. I started to wonder about if that may help me. At the time I was so sick of doctors, hours away from my GP who I actually really loved and knew me and my family. I kept it in the back of my mind. I started to notice, The days I ate Pasta for dinner or subway for lunch, I'd be bloated, D, moody, just miserable. I told some friends and family, this is what I think I have, and most of them laughed at me, saying I was a hypochondriac. Others accused me of just being sick with "House's" disease of the week. (fox's show House did a episode with a celiac patient)

I got an appointment with my GP for Jan but called ahead to get all the customary blood work done, I asked about the Celiac Panel, and it kind of got brushed off as "You don't need that, you should see an endocrinologist if you want that. Well when I went in to see the doctor, I came armed with info, symptoms and demanded the boodtest. I told her everything I told her it's a simple blood test, just run the test if it's positive I'll go to whatever doctor you tell me to. She ran the tests for me begrudgingly, and they called me and told me the numbers, and told me to see a GI. They never said I had Celiac. I never got up the to see the gastro, but when I came in for my 3 month follow up, she told me it was Celiac.

This has been a great relief for me, to know i'm not making it up, to know that Yes I can get better! I've regained some energy, and i'm working through other food intolerances, but i will survive!

[jvalentine89]

My story begins when I was about 3 years old I started having eczema all over my legs. The more I itched the more it spread and became like hives all over my body. My parents thought it was the soap they were using to wash me, but the rash continued. My eczema plagued me for most of my childhood along with chronic stomach aches and lower GI pain, accompanied by terrible bouts of constipation and diarrhea. When I was in middle school I started paying attention to what I ate to eliminate some things that might give me a stomach ache, so I stopped eating junk (cookies, cake, etc.). However, my stomach troubles continued and then I decided I was probably eating way too much processed food so I became vegan (I also love animals). My stomach didn't get any better and every day I felt exhausted and famished, not to mention I had to come home from school to go to the bathroom everyday. I saw a GI doctor who told me I had IBS, and I should go on the B.R.A.T (bananas, rice, applesauce, toast) diet, and it did me no good.

In high school I started dropping weight, partly because of stress from school but mostly because I was still eating a lot of things with gluten. My mom's side of the family has issues with their digestive tracts so I asked my grandma what she thought it could be. She told me that her brother has Crohn's disease and she was advised not to eat wheat since she came to America and was seen by a doctor. I researched food intolerances at the library and found a lot info that applied to me but I was skeptical, so last year I stopped being a vegan and starting eliminating wheat. I still had no clue that there were websites like this available and was uninformed that wheat products are hidden in so many things. This August I went to my doctor who is both my therapist and my regular MD and he put me on a gluten-free diet and within 2 weeks my stomach aches were lessened by about 70%. I also asked my grandma if she had ever seen a doctor since being advised to not eat wheat and she told me in these words exactly "yes, they told me I had celiac disease". Thanks grannie (haha). So far, in the last few months i've gained so much needed weight, and i've gotten my period back for the first time in 3.5 years! Going grocery shopping is somewhat of a challenge although I've made some new favorite foods! I'm lucky because I'm living in NY now, which has a lot of health food and specialty stores, andi'm also going to be living in san francisco next year, and I have memorized the address of every whole foods and trader joe's in the 7 mile radius of my future college (okay, well maybe not memorized...but i know theres a whole foods on fourth street!). The food is my kitchen that isn;t gluten-free was consumed by my family because no one else (besides g-ma) has celiac. In school, its a bit of a challenge because the cafeteria only caters to wheat-eaters (Err!) so people always ask me why I go out during my free periods. At home, what really gets to me is how much wheat-products my family buys knowing that I can't eat it. My mom buys 2 loaves of bread ... for what?....me to stare at? Anyways the one food that i really miss is... egg bagels!

[Rivergirl]

Wow.. Good luck on the book. In reading the replys from all these wonderful folk it is so interesting how similar we all are.

I was just diagnosed 10 days ago. I had major mixed emotions - relieved I finally knew what the &)^#$ was going on but in shock because it was my second shocking diagnosis of the week that I thought was going to change my life forever. Just three days prior I was diagnosed with diabetes. Now I know it all ties together.

I only wish my diagnoses was decades earlier because I have been living in such pain and mystery for so long. My turmoils started with a severe case of Mono in high school, then much stomach pain and other gastro-wonders. I would nearly starve myself to avoid stomach pain but would still gain weight so I would run more miles thinking I just must have an incredibly low metabolism. Then when I hit my late 20s - everything went haywire: lymph nodes swollen all the time, embarrising skin rashes, constand fever, joint pain, extreme fatigue. The doctor diagnosed me with lupus. I gave up certain foods - red meat and beer (hated how one beer made me feel - if I only knew!)

Meanwhile I continued to eat well, but little did I know you can eat well but still have so much gluten AND I continued to gain weight. Then in a routinue physical and blood test, my doctor was shocked at my low nutrient levels (potassium always low, but low in nearly everything else for the first time) and I was now anemic. He put me on a regimine of vitamins - which probably had more gluten in them and did not make me feel good at all.

Then this last year - the sh*t the fan. My arms and hands were in severe pain and going numb and were very tingling, then uncontrollable migraines, had blurry eyesight, brain fog, heartburn, and lots and lots of D But still bloated, and still huge stomach pain. I switched doctors and my new doctor felt that I did not have lupus - although I had a very low positive ANA. He checked for a brain tumor (due to the migraines and blurry and brain fog) and ran thyroid test and then a test for diabetes. He also ordered a full upper and lower GI test. So that leads me to today: a positive test for diabetes and now celiacs. The good news is that my 3 doctors now think I was misdiagnosed with Lubus and once I get Celiacs under control it is likely I will be able to get off of my insulin shots.

This is truly a trial and error diet. I am learning out of a firehouse - but I feel so much better. Even though I am rather new at this - I am adjusting to my diet quiet well. Because I simply tell myself when I see a piece of pizza: " Do not be tempted. Do not eat. THat will kill you" I honestly believe celiacs would drive me to death if I kept living life without knowing....

Good luck to you... Thanks

[anemic]

Thanks for collecting these stories, it is important for people to learn and understand celiac better.

I am 33 and have 2 children. When I was a university student I had a lot of gastro symptoms and had the whole gammet of tests- nothing showed, just diagnosed with IBS, took medication for 1 year, symptoms improved.

When I had an emergency c-section with my first child and hemmoraged, I was given a lot of blood yet still had low iron. I had really bad pospartum, in retrospect I was probably severly anemic.

With my second c-section, I was really anemic again and told to keep taking iron. To be honest, I didn't take it very seriously, I was too busy with two babies to even think about how tired and pale I was.

Then I began getting migranes for the first time. One morning I thought I was having a stroke because the visual aura was interfering with my vision. The ER doctor reassured me that it wasn't a stroke but that I needed a blood transfusion because my iron and hemoglobin were so low.

This blood issue continued for 2 years with a number of blood transfusions, prescriptions and iron shots. Then went I was in the ER for assumed appendicitis, the surgeon came and said "good news you don't need surgery today, bad news is you need a blood transfusion and a hemotologist"

Seeing a hemotologist was a 6 week wait (in Canada) but well worth it as my family doctor (wonderful guy) was unable to manage what was assumed to be iron deficiency anemia. By this point, I was so weak all the time, my iron was 3 and I was losing my mind. After many, many tests the hemotologist diagnosed celiac- I was relieved it wasn't leukemia.

I was diagnosed on January 26, 2007 and it has been a difficult spring. I have had 10 iron infusions which has brought my iron up to an almost normal range. Since off gluten I am feeling better and exercising every day, gaining weight and have nice pink cheeks. It is still full of ups and downs and it is amazing how much of your body is affected. I want to run every day but it is really difficult with the joint pain in my back and knees. I was spending hundreds in chiropractic which I no longer need because I'm gluten-free. The neuropathy is concerning and my eyes have taken a beating. My blood is the key issue and I will know at the end of the month whether the diet is solving the problem, or if additional causes need to be explored.

[ariesmama]

Hi all!! It's been a long time since I've been here! My life has gotten crazy! I had my second baby almost 2 months ago and having two kids is quite the challenge for me! However, I am doing great with being 100% gluten free! YEA!

I came back to this site to ask for some help from anyone willing! I am creating a small book of sorts as a personal project (though hoping it might someday get to be published). I would love to include some personal stories of people of different ages (or loved ones of those people) telling of your diagnosis and reaction to the new gluten-free diet you were about to start. Please only share with me if you don't mind me quoting you in my "book." I will only use the stories and quotes from this specific thread.

Thanks a ton!!

Hi,

My self diagnosis started with my mom...She had a range of symptoms that bothered her(stomach cramps, D, headaches/migraines), and one day my dad was in the grocery store and overheard two ladies talking about celiac disease and the symptoms...He asked them what they were talking about, because his wife, my mom, had the same symptoms...After that, mom cleaned up her diet, and we were all on the diet after that, since she did the cooking...I was a teenager at the time, and didn't have any idea of what was going on, since I was more tuned into my friends instead of my family...When I moved out, I didn't know anything about celiac except it was something my mom had, so I ate a lot of pizza, pasta, breads, and I had horrendous rashy acne(DH I now realize) that I couldn't get rid of, and medications(acutane, tetracycline, hydrocortisones)only helped a bit, but not much...I tried everything I could think of to get rid of that acne, and nothing worked...I also had awful stomach cramps and constipation followed by D a lot of the time, but thought it was an allergy to msg...one day I was in my car, listening to a radio talk show, and they talked about a website for celiac,this one, actually...I passed the info on to my mom so she could look it up if she was interested...Well, lo and behold, a month later she did, and she got curious about other symptoms and saw a picture of someone with terrible acne(DH) and she said it was like looking at me...She phoned me up that day, and told me she thought I had celiac disease, and to try the diet...I was willing to try anything by this point...Ironically, I'd just had a bowl of campbells cream of mushroom soup and a bowl of mr noodles for lunch and was having my usual nap after lunch...She says my acne started clearing up in 3 days on the gluten free diet, and I was clear skinned after a month...It was amazing, after 5 years of prescriptions, dermatologists, sugar free diets, caffeine free diets, trying anything I could think of to clear up the acne...And my symptoms were different at the time, although I've since heard of other people with celiac having the same symptoms, so I don't feel so bad now that I know I'm not alone...I have a constant battle with constipation, itchy skin, extreme tiredness, anemia, and now I know I can add the skin tingling and numbness(hands, arms, face) to the list, rls to the list, and anxiety to the list...I only found this forum tonight, and it's been eye opening for me...I shall be back tomorrow to look further...And I should mention that it's been difficult to stay gluten free, and I frequently cheat because I miss certain foods too much...I used to hate the celiac, but it's been much easier now that I've found a grocery store that carries a lot of different foods and pasta noodles that are gluten free...That has been a big help...I find it a pain when I'm eating out, and my mom wasn't very supportive in the beginning, because she thinks she can tolerate more food with gluten than I will allow myself(and then she wonders why she still has some symptoms after eating gluten rich foods like pastas and breads/donuts) but she's much better at supporting me now, since she knows I don't choose to be this picky with my food, and I'll suffer if I'm not this picky about my food...Thanks for asking for our stories, it's been very good to share it finally...