Hello, my name is Susan, and I love playing doctor with the internet.
It’s not as kinky as it sounds.
I know from all my previous experience that most of what I read online only leads to more questions, and my quest for answers is never quite fulfilled.
Yet time and time again, I return to the world wide web and type in my health related queries.
I get my fix on websites like WebMD, where self-diagnosing internet MD’s, like myself, converge to secure (a usually fatal) internet diagnosis.
I actually did a video demo about the “dangers of WebMD” where I purposefully entered PMS symptoms and by the end of my search, even though I knew my symptoms were just my normal monthly cycles, I was half convinced I had a parasite caused by unknowingly eating poop.
You can watch the paranoia unfold in my Just Say No to WebMD video here.
So why am I on WebMD again now?
For those of you who have been following me since last summer, you probably remember my tummy troubles last year. If you’re new, I’ll summarize. Nearly a decade ago, I began getting sick to my stomach day after day. It took months of tests, doctors visits, ER trips, and one day a casual conversation my Mom had with a coworker to determine that I had an “intolerance” to wheat/gluten. For eight years or so I never fully recovered, and would become super sick three to five times a year when I would accidentally eat wheat and pay handsomely for the innocent mistakes.
Then, from about October of 2010 through October of 2011, I experienced terrible attacks, as I so dramatically like to call them, where I’d have awful nausea, chills, fever, the cha-cha’s (you know, diarrhea), and as a result lost 40lbs without trying. These attacks started happening a few times a month, then weekly, and then by last summer they were happening daily. They almost always happened in the late afternoon or evening, and would persist for 2-5hrs.
Last year I entered my symptoms and got the following internet MD results:
Congratulations, Internet MD! You could be suffering from any of the following:
- Celiac’s Disease
- Lymphoma
- Lymes Disease
- Chron’s Disease
- Plague
- Graves Disease
- Lupus
- Irritable Bowel Syndrome
- AIDS
- Snake Bite
- Ectopic Pregnancy
- Dengue Fever
- Food Poisoning
- Malaria
- Anxiety
- An ancient evil curse
- Pelvic Inflammatory Disease
- West Nile Virus
- Just plain crazy
Okay, maybe some of those didn’t come up.
But after months of being sick, I finally saw a real-life doctor who ordered a barrage of tests. I enjoyed blood work, X-rays, CT scans, stool samples, colonoscopies, etc., etc.! What fun!
Although we learned NOTHING definitive from all my testing, I did learn a few things from my colonscopy. These lasting life lessons, like when taking copious amounts of laxatives (for the prep) never ever trust a fart, I’ll carry with me forever…
I actually learned quite a few things, you can read all that my colonoscopy taught me here.
Before I start reminiscing again, I’ll get back to the point; I actually have one, I swear.
So my GI doctor told me I should have had a endoscopy, and I should come follow up with him, but I was tired of the tests that yielded nothing, was busy in real life, and after coming to the conclusion that I could no longer tolerate even trace amounts of wheat (like eating fast food french fries cooked in wheat-tainted oil, cream of whatever soups in casseroles, and even from toasters/cookware I shared with gluten-ridden foods at home), I meticulously rid my diet of anything that had even trace amounts of wheat. I even bought myself a separate toaster, strainer, and other cookware to avoid any cross contamination at home.
And it worked…
Until I started feeling bad again this Spring, only this time with a pain under my right rib, no cha-cha’s just terrible nausea, and the occasional episode that involved puking too, with the old fevers, chills, and generally being miserable and baffled by my returning ailment. Although I gained 14lbs since the Fall (which I was happy I did), I have again lost another 7lbs without trying. I’ve had several attacks that lasted well over eight hours, and even had to miss my 1st grader receiving his first academic award at school because I was in the ER after an 18hour episode.
What now? Well, I did my internet sleuthing and blamed my gallbladder for being a no good asshole and not doing its job properly thus making me sick.
I’ve again had blood work, an ultra sound and a HIDA scan which all say my gallbladder looks okay. The blood work, which my GI ordered in October and I never bothered to complete, came back showing I do carry the gene for Celiac’s and with my symptoms, may have the condition after all (previous Celiac panels looking for antibodies were negative).
However, I have no idea what’s causing the current attacks, which unfortunately for my taste buds and accustomed diet, seems to be triggered by fatty foods (like beef, milk, cheese, and processed junk like deli meat and hotdogs).
Currently, I’m forced not only to eat my normal gluten-free food, but also no fats either.
It blows.
For those who don’t know me, my moods are closely related to the quality of my meals, and I can tell you right now, I’m not little miss sunshine these days.
I go on Monday to see the GI doctor, the one whom I should have given a chance and seen last Fall, and I’m hoping I’ll get some answers. Most likely, he’ll order that endoscopy which I probably should have had done a decade ago. Thankfully, endoscopies have no poopy prep like the colonoscopy, so I’m not feeling too anxious about it (expect for this little nudging fear that I’ll have someone’s old colonoscopy tube put in my mouth by mistake…gross!).
This endoscopy tube looks menacing enough without the fear of worrying it was also used for a colonoscopy too. I hope the "scopy" tubes don't get mixed up.
So first, let me say thank you to those who have sent well-wishes on my Twitter, Facebook and email. I have been overwhelmed by the number of you who have noticed I’ve been somewhat missing in action lately. You’re all not far from my mind either, and I’m still here, just fighting the urge to puke every time I eat. I’m hoping to be back to normal postings and also working on the Glamouring page soon too.
Lastly, I feel I should issue a public apology to my gallbladder, who I assumed based on my expertise as an internet doctor, was being an asshole. I should know better than to assume…and to play doctor with the internet.
The silver lining here is that I’m feeling good in a bathing suit, just in time for my vacation. I won’t have to worry if I look better than Zach Galifianakis in my retro red bathing suit anymore:
Again, thanks for your comments and emails, and I’ll keep you all posted as I do my best to not give myself any internet diagnoses (although from my recent searches, my guess is I either have Celiac’s or am under the grips of an ancient curse).
Hope you’re all enjoy summer so far!
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My niece has Celiacs. So, if someone uses a knife to put some butter on their bread, she can no longer use not only that knife, but the butter either. Even a crumb of gluten will get her sick. I feel badly for her as life without gluten seems hardly worth living, but she’s managed to find a lot of creative ways around gluten. Good luck with your testing and I hope they figure it out definitively.
Lucky for me, I’ve been living mostly gluten free for ten years, but you are right, even the smallest amount can be trouble. When a doctor told me years ago that I had just an intolerance to wheat, not Celiac’s because of a negative blood test that only looked for antibodies (and not reliable for diagnosis in most cases I now know), I thought that eating small amounts was okay. I also started eating oats, barley and rye which are NOT in a Celiac’s diet. All those little things, I think, are what caused me to become so sick last year. Even though I didn’t have an “allergic” reaction, I was still doing damage inside which can takes months to heal.
My fridge is full of separates too…I have my own butter, mayo, etc. At this point, I’m not sure if I’m missing something or if I perhaps never fully healed from the trouble last year.
I hope your niece has a hold of it, and unfortunately, for now, the diet is really the only way to go. (at least there are a lot more options now too!)
Thanks for your comment & I hope they give me a real answer this time too!
I’m glad you’re back! I do have a concern, though, and please yell at me soundly if this is heartless or hurtful in any way. It’s this: you can still have chocolate, right? I hope? Because this is important.
Pray for me, Kathy. Chocolate is one of those “fats” that is bothering me…at least the kind I eat.
I’m pretty much eating like five foods and chocolate isn’t one of them
Has your doctor considered gastroparesis?
Since Monday is my first visit with the specialist (only other time I saw/met him was for the colonoscopy), I did prepare a list of conditions I’d like to discuss with him. Before this week, I had never heard of that, but a friend on FB said she’s got the same condition. Even though not all my symptoms match, I think at this point, it’s worth a look.
Thanks for your suggestion, Julie! I need all the help I can get outside of WebMD!
Well, one thing for sure- you will NEVER be obese! You ever watch that channel- “Veria”? You will do well to just follow an almost vegetarian diet! So many “cure” themselves with their diet.
I read an interesting article written by natural-minded docs, and they said there is something to our ancestry- what our ancestors adapted to EATING. for example, I’m Polish- look at an ancient diet of theirs, it’s rye oats, barley, fish, fowl, VEAL. Not much pork or beef at all. Dairy, and vegetables, lots of root vegetables!
The idea is that we ARE suited to eating what our genetics say we should. The far north people- “Eskimos”.. for example, existed on RAW meat and fat. If we tried to do that, we probably would not fare as they do. When THEY try to do an typical “American” diet- they get all sorts of health problems!
Don’t give up, read more and adjust your diet. You won’t regret it, the health you feel is well worth passing over the fatty red meats and such!!
Hang in there!
Ten years ago when I first became sick, someone gave me a book called “Eating Right for your Blood Type.” Oddly enough, gluten was NOT on my list of foods. I haven’t read much on what you’re talking about, but I have heard of it (and I think it only makes sense). I’m a mixed bag though (1/2 Irish, 1/4 Italian (not inland, my family is from an island off the coast of Naples) and 1/4 Polish)…I’ve adapted my Italian recipes to GF living (eating rice pasta), but I sure do miss Perogies & Chruschikis!
I’ll have to poke around and research the diets a bit, but you are right about losing weight…and at this point I am eating chicken & fish with veggies and fruits, oh and rice. Yum. lol
Thanks for the info though, and the encouragement. I need both right now!
I gagged a little.
But I am terribly sorry you have “the squirts”. (We’re more vulgar in our house) My regards to your hiney.
We are actually going to be venturing into the “gluten
-free” world here as well. Apparently it’s not good for my bipolar husband. True story…
Sorry you gagged.
And the “squirts,” as you say (and trust me we say worse) have sort of resolved. If I could just get this nausea under control, I’d feel almost human again!
And good luck with the GF, it is an adjustment, but there are so many more products available now then there were 10 years ago when I started.
I hope it helps your husband; I have friends who have gone GF because their children have autism. Cutting wheat out seems to improve some things for them. Until I got sick, I never knew gluten was such a jerk to so many people!
I’m glad that part is over for you at least. That’s the worst!!
Yeah, hopefully everything will go well in the GF world for us. We will seeee!!!
This sounds so familiar! I also got tired of paying for tests that gave me no information, but I have a lot of the same symptoms you do. If you get answers from an endoscopy, maybe I’ll try one too.
My current working theory right now is that a wheat intolerance, (possibly celiacs, but I’ve been off wheat too long to get an accurate test,) caused other intolerances. Right now I get the most relief by following a FODMAP diet. While chicken is ok on this diet, I sometimes have a bad reaction to it and it seems to be related the broth that some kinds are injected with.
I loved the blood type diet in theory and was following the diet for type B since it matched many of my foods that were safe. Then I double checked with my dr.and found out I am a type A. That diet would kill me! LOL.
I sincerely hope that not only do you get some answers, but you also get a treatment plan that will give you your life back.
Hmm, it does sound a lot like gall bladder problems, my mum had very similar symptoms, finally had her gallbladder out, hasn’t been sick since.
If you are still looking into diet research, google Sue Dengate fail safe diet. It eliminates dangerous additives, preservatives, and some natural food chemicals like salycilates, which many people respond badly to. I went to hear her talk a few weeks ago, desperate to find solution to some behaviour problems in kids.
Good luck and I hope you feel better soon.
Thanks for the suggestion, Kylie! I hope you’re doing well down in Australia! I am going to google Sue Dengate’s diet – it sounds like it’s probably good for you anyway! I don’t know how the regulations are Down Under, but I have little faith in our Food and Drug Administration to keep the bad stuff out of our food. In fact, the more I research, the more I think that’s a truly useless department in our government.
Hope you got the answers you were looking for! Thanks for the comment!
Good luck – hope you find some answers…….
My body started breaking down several years ago, after baby #3 (the grand finale) was born. The gallbladder was one of the earliest things to go. My HIDA scan and all that jazz appeared to be normal. My doctor, however, was SURE it was a gallbladder problem. I did a lot of research and decided it made the most sense. In the end I had my gallbladder removed. Pathology showed it was chronically inflammed. My doctor said that about once a year he sees a patient who has all the symptoms of gallbladder disease without the expected test results.
When my body started to fall apart I went through tons of blood work, biopsies (multiple times to test for Celiac), scopes (I’ve had one colonoscopy and at least half-dozen EGDs — the upper endoscopy), etc. Some of the diagnosis I’ve been given just didn’t make sense. The more I looked into it and the more I learned about it, the less it made sense. In those cases I went back to my doctor to discuss other options. Finally we’ve boiled it down to a handful of chronic health problems (including fibromyalgia, IBS, eosinophilic disorders, interstitial cystitis, etc.). The more I’ve researched these things the more things started to make sense! Now that things are fitting into place I’m able to do more to help manage my health.
I know that medical research online can be a real problem for some people, but for me it helps me put things into perspective and decide if certain things actually make sense.
I do agree and think that it can be a good tool for some people, and also that it helps you be proactive with your health. I’m not only legitimately sick, but I also tend to get worked up easy and convince myself it’s other stuff too
It’s people like me who need to steer clear!
I hope that after all you went through that you’re feeling better now too!
Greetings fellow Celiac! If I may add my two cents, the damage done by years of undiagnosed Celiac disease takes years to repair in your large intestine, even if eating mostly gluten free. By the time most people are finally diagnosed with Celiac, their digestive tract can no longer function properly (shrunken damaged villi–I’m sure you already know) and they develop a secondary intolerance. It’s usually dairy. Dairy is really hard for the body to break down anyway, along with meats and the other foods you described above. If you cut out dairy and continue to be really serious about eliminating all gluten from your diet and environment, you may be able to reintroduce it into your diet later on with no problem once your body has healed. Side note: Deli meats and hotdogs almost always contain gluten–that may be your reaction there.
If you want to get really crazy, you can do a long term eating cleanse where you eat only easily digested foods like fruit, vegetables, whole gluten free grains, lean meats (sparingly), nuts, beans, and avoid foods that tend to be harsh on the digestive tract like dairy, gluten (obviously), soy, peanuts, corn, chocolate (sadly) and eggs. I did that for almost a year and went from being so sick I could hardly work (even on a gluten free diet) to being perfectly healthy. Like a normal person. It was amazing. However, that was extreme and I think dairy alone would be a good place to start.
Also, we have a totally gluten free house. It’s difficult, but not impossible with kids. I do all the cooking, so it’s pretty reasonable to control the menu. It’s just too easy for somebody to wipe their gluteny hands all over a towel you end up using minutes later. Not worth it. Not to mention cross contamination on cookware and surfaces.
Good luck to you! I think a celiac diagnosis is really a blessing. It’s a pretty easy disease to treat and it forces you to be really conscious of your eating habits. If I ever figure out a way to make a respectable pierogi, I’ll let you know!
I just went to the doctor last Monday and he said the same thing about long term damage. I am going to have an upper endoscopy done next month too, but I have a feeling that it is the damage done 2008-2010 (when I was told I didn’t have Celiac’s)….and I have cut out most fats, and my dairy is minimal since cheese and milk seemed to bug me, and I am feeling much better. I just love most of what I can’t have at this point, so it’s seriously a psychological thing at this point. Just as I had to learn to live without gluten, now I have to cut out this other stuff too, at least until I can verify what is going on with my hot mess insides. My husband recently said, “Your body is rejecting all the shitty food you’ve been eating. Long term, you’re better off not eating it.” And he’s right. I’m eating a lot of chicken, fish, rice, fruits & veggies and I feel 90% better.
Thanks so much for your advice, it’s nice to hear it from someone else who has been through it!
Hi Susan. I just had an endoscopy on Tuesday and a CT of my abdomen this morning. The endoscopy was fast but my day was shot because of the sedation, didn’t feel better until the next morning. The doc said he didn’t find anything, still waiting for biopsy results (I guess they take tissue samples as a matter of course?). And now I’m waiting for the results of the CT. I’m very stressed which is doing nothing for my abdominal pain. My pain is pretty localized just under my left rib. I have bouts with this pain every few months. Last Summer I was dealing with the same scenario although didn’t follow up with a GI specialist as the urgent care doc suggested… Of course, because of this, I’ve convinced myself that it’s something serious that I could have caught early if I had taken care of it then. Ugh, the mental torture never lets up. So as I wait for my results, I wanted to let you know that I’m thinking of you and I truly hope we both get to the bottom of what ails us. And that it’s not one of the rare and untreatable WebMD suggested illnesses.
I tell everyone that I have earned my doctorate from Google. And I’m not even sure I’m joking anymore.
[...] for weeks, I haven’t had time to stress about this procedure (which by the way is to get a sense of the amount of damage I’ve done to my hot-mess insides eating gluten, barley, rye and other offenders for years). There’s the possibility that [...]