Hi all. I am sorry if this gets long, but I have a story to tell and I think if I tell it to people that understand and relate I will feel a lot better emotionally. Even if no one reads anything this long.
I remember having my first health problems my first day of second grade, that was 30 years ago. I had the worst headache and puked up my spaghetti on the principle's shoes. The first of many migraines. They started out just a few a year and then gradually increased to the point that my mom was taking me to a specialist. They swore up and down that childhood migraines were so rare and I didn't have them. How right they were. They just kept gradually getting worse and more frequent which then led to years and years of tests, ER visits for pain, hospital stays for intense vomiting. Those are they only symptoms I had until I was 17.
At 17 I started getting stomach aches all the time, sometimes followed by vomiting, D or C ( either one depending on which one the gods felt I needed to go through) and intense pain. More doctors visits, more tests, more BS. You are constipated, you have IBS, you have a stomach virus, more BS. I learned to deal with it and quit frequenting the doctor so much. I was also breaking bones, some of them multiple times.
Around 20, I started gaining weight. I have always been a little on the thin side, always had a low BMI, so when I gained 50 pound out of the blue I was concerned. I also started getting a tingly sensation in my arms and hands. Off to the doctor I go, more tests, more BS, yada, yada, yada. This time it was muscular, off to the physical therapists. Didn't work. Imagine that.
After about three years of more testing to figure out why the physical therapy wasn't working, I started to get awful back pain. I also started to get weird reactions to food. My lips were swelling after eating, constant runny nose, rashes. Off to the allergist and off to a back specialist. More testing, more ah crap, you know the drill. The lip swelling cleared and no food allergies. Amazingly I wasn't tested for wheat.
Fast forward a year and I end up pregnant with by boyfriend. I ended up with a tubal of one baby and a vaginal miscarriage of the other. Guess what, twins. I had to have surgery for the tubal. At this time I heard that on of my co-workers said " she just got her period late". They were fed up with all the missed work I had and thought I was making it all up. Hard things to swallow. A few months later I got pregnant again. This time the fetal heart tones were too low and I ended up getting a D&C after the heart tone was Zero. No late period this time.
About six months later my migraines were getting progressively worse, I was getting about three a week some weeks. More testing, different doctors, and more BS. This time it Polycystic Ovarian Syndrome. Hormone replacement therapy. It didn't work. We then tried a ton of different rescue meds for when I get the migraines. None of them worked. HMMM. Then we tried medications for prevention. Some of them were anti-depressants cause "hey I'm depressed I just lost three babies". They didn't work, didn't help with the mood swings that I had attributed to the lost pregnancies. Mean while, I am planning a wedding with the man I was pregnant with.
Two months before my wedding I found out I was pregnant. Sicker than a dog with morning sickness, hellacious migraines, swollen feet at two months ( was concerned, was blown off). I then started to have some other problems as my pregnancy progressed. I was having stomach pain all the time, racing heart, the vomiting never ceased, and awful heartburn. I was going to the doctor multiple times a week trying to figure out what was wrong.
On March 28th 2003 I went to the ER because I wasn't feeling well at all. I had just been diagnosed with pneumonia a few days before and I have an awful migraine and just felt like over all poo. My aunt came and picked me up. When I opened the door she suggested that maybe I pack a bag. I guess I looked as bad as I felt, or worse. She thought I was going to die on the way to the hospital. When I got there, my blood pressure was 220/180. Doctors told me I was lucky I didn't stroke out and die. Was immediately admitted and treated for preeclampsia. They then induced me, which didn't work at all. It was three days of hell. On Monday morning March 31st 2003, I was rushed into emergency surgery because they couldn't pick up the babies heart rate and my blood pressure was sky high. They were running down the hall way trying to give me drugs on the way and then my blood pressure bottomed out. From what I heard, my daughter was born without a heart rate and not breathing, they had to resuscitate her. Glad I wasn't there for that. Also learned that my placenta was 80% dead. I woke up half a day later to learn I had a baby girl. Spent eight days in the hospital and almost died, but it was worth it.
Fast forward four months, my milk dries up. No cause what so ever. I have also lost 60 pounds since the baby was born. But hey, I just had a baby. About five months later I couldn't walk up the stairs, I had profuse sweating, rapid heart rate, hair falling out. Then I couldn't even pick up my daughter. I was at work one night as a lab tech when I started asking my co-workers what they thought it would be. Everyone said thyroid. They drew my blood and off to test my TSH, T3, and FT4. Hell, I will be my own doctor now. Grave's disease. I went to the doctor the next morning, was told I had a huge goiter ( I some how never noticed it until it was pointed out), and my heart rate was through the roof. Was admitted to the hospital, was told I was hours away from a thyroid storm. Another close call with death. Get the radioactive iodine and things improve. UNTIL.....
I am still dealing with the migraines, I am on FMLA at work so I can keep my job, and I find out I am pregnant again. My endo told me it would be impossible for me to get pregnant with my TSH so high. It was 80. We had a very hard time regulating my TSH. I had just switched hospitals, so I had a new doctor. He wanted to see me quite frequently for the first few months, they were good months. Until I hit 3 months. Migraines with auras four times a day. I had to go on bed rest. My son was born 2 months premature at 3 pounds 6 ounces and spent a month in the NICU, that was March 23rd 2005. My placenta was also very dead and there was almost no amniotic fluid. I am lucky they were monitoring me so close or my son would have died. My OBGYN actually bluntly told me he was going to die and then promptly left the room. She was fired that day. I lost my job due to missed work shortly after I had my son.
Then came the year long struggle with nausea, awful pain under my ribs, no matter what I ate I felt like crap. It was an inactive gallbladder. More surgery. Felt a little better for a little while.
Things from there just got worse. Weight fluctuations from one extreme to the next, the tingly sensation in my arms then went to my back and neck and was no longer tingly, it was painful. More testing, find a mediastinal ( I sure am glad I took all those medical terminology courses in school) mass surrounding my aorta. More testing. PET scans, CT's, referrals. The pulmonologist said it was a broncho-somthingerother cyst ( I am calling brain fog) and it needed to be removed. The surgeon he sent me to said that it would be to risky of a surgery and didn't think it was causing my pain. He referred me to Mayo. Back to another Pulmonologist. He tested me for everything under the sun, couldn't determine what the damn thing was. " It needs to come out". Off to the head of the Cardiothoracic department of Mayo Rochester. I am someone special now. He agreed, explained it would be an extensive surgery to get it out. They would have to make an incision from the front of my chest in-between my breasts, and loop down below the right and continue to the middle of my back. While they are explaining this to me he gets a call from the CT people and the thing has grown. It's Friday, we are going to do the surgery Monday. I go home, get my affairs in order, I am going to be in the ICU for a week and then in physical therapy for three before I can come home. I won't see my kids in a while. I am wheeled into the operating room Monday morning still awake. I look up to a gallery full of people, guess the surgery was a big deal and they wanted to watch. They were disappointed! They decided to do a small incision in my neck and look at it with a scope. The then sliced it up the middle and slid it out. I was in the hospital that morning for 7 hours and then filled full of drugs and sent on my way. I was back to work six days later. Lucky me.
A month later I left my husband. Best thing I ever did. He saw all my sickness as a burden, was never supportive. I lost 30 pounds right away. Pretty soon, I was losing weight, sick all the time, tired all the time. More tests, more no answers. I lost another job due to missed work.
Fast forward to January 30th 2014. I was very ill and in lots of pain so I went to the ER. Had a CT scan done, all that was noticed was an inflamed appendix. Did some labs, no increased WBC, no fever, no sign of infection. Sent home. Meanwhile, the brain fog is so bad I am starting to think I have early Alzheimer's. By the end of March I was so sick I had been to the doctor 8 times in a month. Someone finally sent me to GI. The admitted me to the hospital and schedule my endoscopy and labs for the next morning. I wasn't sure what they were testing for, I had just come out of the procedure when they told me. Sent me home, made an appointment for two weeks later.
Diagnosed with Celiac on Monday April 7th 2014, they think I have had it since birth. My daughter was diagnosed a few weeks later, same with her. Had never heard of it. I was just so happy I had a diagnosis. My GI walked me through the beginnings, I read a lot on here, and I set myself to work. You know the drill.
Two weeks ago, I was again seen in the ER. My appendix is still inflamed, still no elevated WBC or fever. Given anti-nausea meds, pain meds, told if the pain and vomiting get worse to come back. I'm back six hours later. They repeated all tests ( to make sure something didn't change in six hours), was ready to send me home again. I refused. Got my shitty (literally, it was impacted with stool) appendix out two days later. That morning I had a colonoscopy and the surgery was a triple header ( they fixed a hernia that they had discovered during the CT's, my appendix out, and they explored my lower belly). Yay, more holes and scars.
Since my diagnosis I have found out I also have diverticulosis, slow intestinal movement, osteoarthritis in my spine, an elevated ANA ( more testing to figure out why), and all the other related deficiencies that we like to have. To date I have lost 168 pounds and they just keep flying off. I have had three glutenings in the last two months ( accidental, I didn't go eat that blueberry donut I have been craving). I was at the doctor on Friday and had lost 6 pounds since my surgery ( went from taking three anti-nausea pills a day to three in two weeks) so I would say my surgery has been successful. I have been eating up a storm. My TSH is high so I should at least be leveled off on the losing. Went to the doctor Monday morning and had lost two more. My GI thinks there is something else going on. I have to keep a diary until July 8th of everything. What I eat, calories consumed, what I drink, when I poop, everything. Then if I have lost more than ten pounds on my next appointment, it's off to the hospital for more testing, nutritional therapy, more BS. Does it ever end? One good thing is I haven't had a migraine in over two month. Childhood migraines are really rare LMFAO
I called my GP this morning to see if I could get on an anti-depressant, this is all too much to take.
Well, it took a lot longer to write about thirty years than I thought it would. If you read this, Thank you for taking the time. I hope you didn't see too much of yourself in this. If you didn't read it, that's ok. I already feel a little better just getting it off my chest.
Though I'm sure many of us can relate to the decades of problems with no answers, the fact that you had so many problems that were bad enough for surgery without anyone even suspecting that some sort of food intolerance was involved is simply astounding. Goes to show that our medical industry cares nothing about nutrition and instead is all about surgical and pharmaceutical options.
Skip the antidepressant though. They come with more side effects than you want right now. Instead, do an internet search for foods that are natural antidepressants. Many of them can be more effective than prescription drugs and won't have crazy side effects.
Also, don't beat yourself up about feeling down. You've been through hell and there is absolutely nothing wrong with feeling angry, frustrated, sad, or even depressed from time to time. It would be more unnatural to not feel that way after what you've been through. But I can tell you that from what I've seen of your posts, you strike me as being incredibly strong and resilient, even if you don't feel that way right now. I also have to say congratulations on having two children despite all of those health problems. That is a huge achievement.
So some ideas for how to break out of negative cycles of thoughts once you get stuck in a rut:
• You are going to become a much better cook than you ever thought you could be. You could make trying new recipes and foods your "thing" rather than seeing it as something that you are forced to do.
• Start thinking about what types of vacations you'd like to take now that health is in your future. I have been planning a long road trip for a while now, and even though life keeps interfering with actually setting the dates, planning the trip is always a fun and hopeful process.
• Though I wouldn't recommend strenuous exercise as long as you have vitamin or mineral deficiencies, yoga could become your thing. It is excellent not just for relaxation, but also for keeping your adrenal system working properly because muscle movement is the only thing keeps the adrenal system working. And your body will be expelling toxins so you'll need to have it functioning.
• Every time you think about what hell you've been through, just remind yourself that had you not figured out that gluten was a problem, your daughter would have had the same problems in her future.
But you have also taken a big step just by venting all of it in this post. Sharing and getting it all out is one of the steps in processing all that you've been through, and one that can be a lot more cathartic than you might expect. In case you hadn't noticed, every one does it. Though I didn't do my venting on the celiac forum, I definitely did my share. (Big apologies to my friend who had to hear most of it.)
But 1.5 months is still REALLY early in the process, especially considering all that you've been through. I only had problems about 25% as bad as yours and I don't think I got a good handle on all of my various issues with deficiencies and the like to start feeling better until around month four. And everything related to health and gluten was still the primary focus of my thinking for the first nine months. But after that, it is just a regular, boring existence. Sure, I still have health problems that I don't completely understand arise more often than I'd like, but they don't define my life, just interfere from time to time. And though you will have more to deal with long term having had all of those surgeries, staying gluten-free does mean that you can expect boring to be part of your health future as well.
You will get there, and you'll never be tempted to eat gluten again.
This was probably the PERFECT first response I could have hope for. I cried, but they are happy tears. I am doing things right! For one, I am doing or talking about doing everything you stated. Depending on when I have the energy and actually feel healthy enough for any of it.
There is still more to the story but I edited for content, I have enough to write a book. This whole medical history spanned from about twenty different doctors and three hospitals. I could have listed pages of tests done, medicines tried, and a lot more symptoms ( that brain fog is hell). Today my brain is mush. It took me 2.5 hours to write that mess. But I feel a lot better for it.
I am still very much on the fence right now about the medication. I was on them years ago and they helped with my symptoms and I didn't have any side effects. When I felt I didn't need them anymore I weaned myself off them with no side effects either. But that was years ago and before Celiac. I have a open prescription that I asked my doctor for four months ago that I never had filled. From the time I got from his office to the pharmacy I changed my mind. But I am going to look in to foods like you suggested before I make a decision.
The one and only thing you got wrong is I was a phenomenal cook before Celiac. I used to love to cook, did it everyday. Hell, the last two years I got paid to do it. I quit my job a few weeks after my diagnosis, I was getting glutened at work. But as my boyfriend pointed out, I haven't cooked nearly as much the last year as I had previous in our relationship which happens to correlate with a major decline in my health. I am getting that back, trying desperately not to get it wrong. I have been cooking more frequently now and researching recipes on line. I already have quite the collection. I have also talked about doing a lot of canning this summer while I am still not working. I bought a food dehydrator so I could try and make gluten free Jerky. I want to learn how to make all my own foods, condiments, breads, dairy free ice cream and the list goes on. I am getting there with the food it's just going to take time.
The vacation talk made us giggle because we have been throwing ideas around the last week of all the different places we wanted to go. Looking online for exclusively gluten free restaurants to go to and planning trips around them. It's funny though because he has been laid off for the last six months and just was called back to work, and I haven't worked much since February for obvious reasons. We can't afford it right now but it's fun to plan for the fall.
We have been discussing the exercise also. Yoga is my number one choice and his ( he thinks yoga pants are sexy). I have a dvd just waiting to be opened, waiting for the energy. I am also going to start walking every day. I don't ever want to be as heavy as I was, even if it was all Celiac's fault. I don't want to lose any more, just don't want to gain it either.
I think realizing that gluten has been my problem and is going to save my daughter feeling like me has been my saving grace, my children have kept me going. That and my very supportive boyfriend. If I was still with my ex-husband the last three years, I don't think I would be typing this, I would have given up. My bf has given up things he doesn't need to just for my health and safety, that and the fact that he loves me. Is will to give up more if that's what it takes to get me healthy. I have a very good support system. My ex-husband brings me my children a few days a week and then picks them up a few hours later. I can't drive for a while yet due to restrictions. He has helped me out with food, giving me extra money tacked on to my child support even when he has them more than our 50/50. He would never try to use it against me. My mother is also very helpful. We are awaiting her tests right now. Her tTg IgA was 0.4 but they didn't test her for IgA so she is waiting to hear from them on that. She has a history for thyroid issues, Sjorgren's, and lupus. I bet her a dollar she would be positive and I am not giving up that dollar until I see a normal IgA. haha
About doctors, I really have no faith in the medical system any longer. And it is sad to say since I dedicated 16 years of my life to working in a laboratory. I don't know if I could do it again. After all the " it's all in your head, we can't find anything medically wrong with you" absolute bull, I have a lot of problems putting my life in their hands. I just don't have the capability to go without them. I am too damn sick! And it's their faults! But my doctor that I have had for the last ten years has tried his hardest to find out what was wrong with me, send me to specialist when he couldn't figure it out. I am his first Celiac patient. I was also the very first patient he had after his residency. Any time I call, the nurse is calling me shortly after I leave a message. I think part of that is they know they dropped the ball so many times over the past ten years that they are afraid I am going to sue. If it helps me not fall through the cracks again, they can call me every day. I just hope that it is all up hill from here and not many more setbacks because me being incredibly strong and resilient only goes so far. I honestly really don't know what I am still doing alive. Celiac hates me. Not sure if my insurance will pay for genetic testing but I sure am interested in the results. I am going to look into seeing if it is covered, my doctor will order it. Might also save my daughter from a gluten challenge and an endo.
I am trying not to let it get me. It's getting easier and this helped immensely. You were a saving grace in a very dark moment and I thank you for it.
I am amazed at the intensity of your symptoms. I always thought that if I had had such visible symptoms, I wouldn't have spent at least 30 years with undiagnosed celiac. Still I am here to happily say that I feel much better, have some energy, and am glad to give up many foods I really liked in order to gain health back. The BRAIN FOG is gone!
Unfortunately your story is more common than you would think. 30-40 years ago, Celiac was not a well known disease to Doctors and especially the population. I had never heard of the word gluten or Celiac until I was around 45, three years ago. When undiagnosed for so long the disease attacks anywhere it wants. I have miscarried, had parts taken out, hundreds of medications, multiple AI Diseases and more pain than one person should have. You know what I'm talking about. My body is worn and tired as is my mind. The last hurrah was getting diagnosed with Cancer.
At this point I just try to maintain what health I have left, I know my limits and don't push myself. I eat well and enjoy food but I live life more than I ever have. When you lose 30 some years of good health it feels good to just "Be" again.
You will find your new normal. You will most likely be left with the effects of the last thirty years in some shape or form. But you made it thru and that is an accomplishment in itself. Be kind to you. If you need a med to get you through a few months or longer, it is ok. The point is to GET you through it however you need to.
HAVE A SUPER SHINY DAY
LTES gem 2014
*Multiple AI Diseases
"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.
Are We There Yet? and Dad says...All you have to do it ride it out.
Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner
Some parts of your story were familiar. Other parts were not. I'm sorry. Give yourself some time to learn the details of the gluten-free diet. I hope you figure out the additional complications. I hope your present doctors are good ones.
Your story is not unfamiliar to me at all. I have a similarly long story, complications, multiple miscarriages and I could never carry to term.
There's more, but this is your story and your thread and most people on here are already aware of my saga, so I will not bore them again.
My point is: believe it or not, there are many people just like you who were symptom-treated
for years, lost a few organs, etc and have a hard time believing they will ever trust a doctor again. But we do because we need good follow up care.
You also feel as if your are angry, frustrated and depressed right now. Been there, too. Totally understandable.
The good news is...this will pass. You will start to heal and soon, the fog will lift, your BP, TSH and a few more things will normalize.
I am sorry that you went through all of this, but now you know what the underlying cause is and you can heal.
As your body heals, so will your brain function and your entire outlook. I promise.
Read this book :Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler. Knowledge is power when it comes to this thing.
and check the Newbie 101 thread in the coping section and just try to be patient with the healing process.
Do not push yourself to do heavy exercising just yet. Walk yes, that's fine... but run, lift weights, etc? nope..... WAIT a bit.
You have to mourn all the bad things that happened yes, but --then, you have to move on. You're going to be okay!
You are still young and have a family and loving support.....and your whole life in front of you. Every day is a healing day.
"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
"If you want to lift yourself up, lift up someone else" Booker T. Washington
“If idiots could fly, the sky would be like an airport.”― Laura Davenport
"Do or do not. There is no try. "- Yoda.
"LTES" Gem 2014
Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat. I. Win.
hello, my dear. your story echoes my own. (((((((((((((((((((((hugs)))))))))))))))))))))) it's crazy - out of all the doctors i have seen before i got my celiac dx, none of them could connect the dots so, we trudge on, hurting and sick. i, too, was too sick to hold my own baby. i watched him take his first steps from my hospital room window when my mom brought him (outside, because they thought i might be contagious - although they still didn't know what was wrong with me)
that being said, this is the ONLY THING that has worked (gluten free diet) and i have so many major improvements in every category of my health. after countless doctors scratching their heads and throwing pills at me........ hang in there. this disease affects every part of your body. stay vigilant and you will see improvement and get your life (back) <although, before my dx, it wasn't much of a life lolz. keep copies of all your medical records from all doctors for show and tell. i think if i had done that, i would have had a better chance of a sooner dx. i sort of got the "aha!" moment from my gp when i saved monitoring test results from when the power plant down here had a massive ash spill. they offered free testing to make sure people weren't affected by the ash in the air. they tested for deficiencies that i had that were common for people with celiac. i probably would have been dead by now if not for that. my doc was suggesting 'nutritional therapy' as a last resort................
your post made me cry - i went through *exactly* the same thing with the zero heartbeat baby/emergency d&c. the whole untreated celiac thing is a heartbreaker in all aspects of life. i even wonder if i would have made some really stupid choices if my brain was functioning properly.
you are on the right track it's OUR TIME, now
misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010
only YOU can prevent forest fires - smokey t. bear
Good Lord woman! I feel your pain! I didn't have all the surgeries but endured years of craziness as well. I think I just swallowed it all. But yes I totally get ya.
Of course, I gotta give you some advice because I've been gluten free (except fro cross contamination) since 2003 and I'm 30 as well.
Liquid adult vitamins from a health food store (not the grocery store) that are gluten free. That will start your body off better than taking any vitamins pill which are really hard to digest for a person like you whose guts have gone through so much. You'll be amazed at how much energy and how positive you'll start feeling once the liquid vitamins have been going through your system for a good month. Things will start healing up.
Also, I got myself up to a gallon of water (over a long period of time). Drinking water actually helps the body flush out the gluten protein chain, especially after cross contamination since it's not bulk material in your gut.
If you want to read another long story like your own just check out mine on my profile...it's crazy how so many people go through so much just to learn we should have been tested for our allergies in the first place. Nutrition nutrition nutrition. I wish I'd been taught more in school when I was a kid.
You guys are great! Thank you so much for your kind responses and I am sorry you all have had do endure much of the same. I can't believe the overwhelming support I have found here. I wish I would have had it ten years ago, but I have it now and that is all that matters. I have found a family here.
I went back to the doctor this morning, lost more weight. Just a half of pound but I was also wearing jeans and a sweatshirt today and shorts and a t-shirt on Monday so it might be a little more. I just need to stop worrying about it until July 8th. This was my first time seeing this neurologist, I had the appointment way before my celiac diagnosis so I thought I would keep the appointment. It was hilarious. He was wondering why I thought it took so long for the diagnosis. I asked him if he honestly wanted to hear my response. The look on his face was PRICELESS. I wish I could have captured it on camera. He politely declined. I thought it was so funny. Pretty much narrowed down that the migraines were celiac caused but couldn't say for certain I wouldn't get them in the future. Wrote me a script for a recue and anti-nausea. Sent me on my way. Hope to not have to see him again.
One thing I have figured out in this whole thing is I am not just going to settle for the lack of answers I get. I know when something new is going on, we know our bodies. I will sit and ask questions until I am blue in the face, until I get the answers I want to hear. I don't care if they think I am a pain. I am the only one that suffers when they mess up. I am also going to ask to be assigned to a case worker. I am woman, hear me roar. lol
I woke up feeling great today. Happy, full of piss and vinegar. I am so glad I took the time and frustration to get that off my chest. It really feels like a weight has been lifted. A lot of that has to do with reading all your kind words. I am also so very sorry that your stories also mirror mine in some sort of way. The things we have been through to get to where we are today. You guys are amazing people, have already done amazing things for me. For that I will be forever grateful
I was diagnosed with celiac because of migraines. I used to get them 1 to 3 times a month (for almost 30 years) but after being gluten free for a few months I started a nine month period without one. I hope that your migraines will show a similar response to the gluten free diet.