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Am I Being Shoehorned / Misdiagnosed?


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#1 Mordikar

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Posted 06 December 2011 - 08:33 PM

Hi,

My name is Justin. I'm a 37 yr old male from Texas. About 3 1/2 months ago i started getting nauseous, vomiting, and having pain in my abdomen. I also have a lot of gas and would get really really bloated if i ate more than about a handful of food at a time (I have kinda big hands). I had diarrhea for a few days, but then it stopped and a few days later had constipation for a couple of days. And more pain. Driving in the car for any length of time causes a crushing pain (like something is being smashed between my ribs and hip)

Over time most of the symptoms calmed down. I always have pain in my right side abdomen, usually in the front, almost always in the car. Sometimes it's a dull ache, other times it can become sharp. The nausea is gone (unless the pain gets bad and then it comes back), i haven't actually thrown up in quite a while (other than the half slice of pecan pie 2 days after thanksgiving) sometimes i get pain in other areas like the back just above the kidneys on both sides but i think that may be mostly gas. gas is still there. For the most part that's it.

I was initially diagnosed with food poisoning (there was some bad cheese dip involved, i wasn't the only one sick) , given phenegran, pain killers and antibiotics and sent on my way. When that didn't help i ended up in the ER and was told i had a kidney infection, more pain killers, more antibiotics (Dr's love those tings), a stool softener, and more phenegran, and sent on my way. When it still didn't go away the PA i was seeing gave me more antibiotics this time Cipro (a rather nasty one) and said "maybe you're just nursing some kind of infection in your intestines."

I've had 2 rounds of CT scans, blood work etc looking for kidney and gallbladder stones, as well as looking for tumors on kidneys and liver. nothing. When those were done i waited 3 weeks in pain to be told to schedule an appointment in the middle of Nov (another 2 weeks) to discuss the results.... i ended up with strep throat, (another round of antibiotics.. I'm pretty dang sure this ISN'T a bloody infection) but ended up with a new PA who listened to me. She at least listened enough to take me off the new BP meds i had been changed to and put me back on the old stuff (these issues started about a month or so after changing the meds i thought it worth a try). She then said she gave up and sent me to a Gastroenterologist.

From visit 1 they were mentioning Irritable bowel syndrome, and celiac disease.... I mentioned gallbladder and was told they didn't think that was an issue. Had my first alien abduction (colonoscopy) and an endoscopy. they biopsied akll through me, found 1 tiny pollop, a few tiny diverticula, and nothing else anywhere. everything says "normal mucosa" (oh and the pollip and diverticula were in left and back areas ... wrong place)

He is back to saying celiac disease, over the phone i was told biopsy showed possibility? and i am to go in friday to do the blood work. (I haven't tried gluten free diet yet as i didn't want to possibly skew the test results and get a false all clear) This guy is rather pushy about celiac.

Here's my issue with this. I've eaten wheat all my life. I live on pasta. I cook Italian, French, and Mexican all the time (i do all the cooking in the house i i really do mean ALL the time). My best friend is Italian and swears i have to be kin because i cook, eat, and act like one of her family. I'm still eating wheat stuff. My current diet consists of raisin bran in the morning (i was told to maintain high fiber diet for the diverticula... which conflicts with the reduced fiber diet for IBS but whatever...) so raisin bran in the morning, for lunch i have chicken noodle soup, a small salad, and container of honeydew melon from central market (cause i know it won't cause severe issues), and whatever for dinner, but i've been keeping it rather tame and stick to salads, and small softer meats. On occasion i've had crackers, meats, and cheeses for lunches on the weekends. So there is a good amount of glutin containing foods in here. Some times I hurt and have nausea, other times it's just that mild ache in my lower right side (just under the ribs). Last night i had Lasagnia, salad with crutons, small piece of bread, and stuffed mushrooms. I was fine (other than dull side ache and the now normal gas).

I would figure given the amount of gluten in my diet i should be having issues every day... or at the very least my pain and other issues should be fairly consistent not very mild for 4 days and then 6 hours of massive pain and suffering and then back to mild again for 2 days etc.

I know people with I.B.S. they are usually perfectly fine unless the IBS strikes then they are SICK... also IBS causes bad diarrhea or bad constipation. i'm not like that i'm in mild pain / pressure in just the right side all the time. I very rarely ever have diarrhea or constipation. Also IBS is usually connected to stress and i have pain whether I'm stressed or not, even while trying to meditate(not hugely successful these days), or while soaking in a hot lavender bath. Dr's seem to be very eager to diagnose IBS now, and it seems for most the diagnosis really means "I have no idea what's wrong, this is way out of my league, but rather than tell you that i'm going to tell you you have IBS, there's no cure, and you just need to learn to live with it".

If i have Celiac that's fine i suppose I'll just have to learn to live with it, but it feels to me like i'm being shoehorned into a diagnosis that doesn't seem to fit... I figure you guys are the pro's. You live with this disease, day in and day out. You experience the suffering. Maybe you might be able to shed some better insight on it than a man who isn't suffering and has no vested interest other than collecting insurance money and getting to the next patient.

Your help and wisdom would be greatly appreciated.

Justin.
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#2 mushroom

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Posted 06 December 2011 - 09:31 PM

Hi and welcome to the board, Mordikar.

You are absolutely right to resist the trash can diagnosis of IBS, otherwise known as "I Be Stumped". It is trotted out so often as to be a cliche. Just like a migraine is a headache.... I would actually not believe anyone who told me that they had IBS - it is only that their doctor has convinced them to accept that diagnosis (heck, I was given it myself for years).

So what are the celiac symptoms - well, there are over 200 of them, but most doctors can't get past failure to thrive as a child, wasting, diarrhea, so at least yours is willing to entertain the idea.

Now, why could you eat gluten all those years and then suddenly have a problem. Well celiac is a genetic condition, but to carry the gene just means you have a genetic predisposition to develop it, not that you will. There is normally a triggering event, some physical or emotional stress or trauma, illness, childbirth, auto accident, you pick your particular stressor -could have been the food poisoning, and antibiotics are one of the known triggers. And it often comes on just out of the blue, while others have a gradual worsening of a lifetime of symptoms. Pasta and bread and Italian, not a problem until the trigger strikes.

So why this sudden probleml? Number one, the trigger, and number two, your body creaates antibodies to the gluten once it decides that what is floating around in your bloodstream is "non-self", i.e., foreign. These are autoimmune antibodies. So it does the best job it can in dealing with what it perceives to be invaders, sometimes a better job than others depending on how energetic it is that day and what kind of load you have presented it with. Sometimes it depends what you eat with that gluten. Pizza always used to be my comfort food because I always had cheese, pepperoni, mushrooms, sausage - oodles of fats to counterbalance that gluten.

Gluten can cause diarrhea, constipation, alternating between them both, or be totally silent in the gut. Some people have no digestive problems, only neurological. And it's doctors who connect IBS to stress and try to tell you you have stress whether you are aware of it or not :rolleyes:

The good thing is that if you have celiac there is a cure and it requires no expensive or invasive treatment - just a change in your lifestyle. If, as most doctors want, you have IBS, then you are stuck going back to them all the time for prescriptions to handle your symptoms rather than dealing with what causes the problems in the first place. But they can't shoehorn you into a celiac diagnosis - heck, half the people who regularly post on this board have spent half a lifetime trying to get a diagnosis of celiac, and many of us fail. It is no easy task, because there is a 20% error rate of false negatives on blood testing and endoscopy with biopsy. So only 80% of the people they think of testing who do have it actually get diagnosed. For every diagnosed celiac, there are about six people wandering around out there who are gluten intolerant (same symptoms) but who cannot pass the celiac test :P It used to be doctors would tell them to go away and eat gluten to their heart's content. At least that is changing and there is a recognition that you can have a gluten problem without having celiac.

So when you go back to the doctor for your blood work, get a copy of the pathology report of the biopsy and tell us what it says. And then you will have to wait a week or so for your blood results. Make sure you get copies of these also because you may want to tell us what they are and to take them to some other doctor. Until then, keep eating your gluten like the good lad you are because to stop now could affected your esults.

Good luck on Friday. :)
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#3 Roda

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Posted 07 December 2011 - 02:39 AM

Wow, mushroom summed it up pretty good. I percieved myself as fine until one day in Feb. 2006(I thought I was fine for 33 years). I was suffering from severe tachycardia and ended up in in the ED. I was given meds to get my heart rate down. Long story short this was my first symptoms...so not GI related. Then the fatigue set in. Next the horrible reflux all day with no relief. About a year or so later it was found that my ferritin was in the toilet. I began researching links to anemia/iron deficiency and hashimoto's disease(which I have had since 1999) and links to celiac kept coming up. As I read the exhausting list of symptoms I began to think it was a real possibility. Of course I was in denial. I finally mustered up the courage to ask my endocrinologist 6 months after I started reading about it. I had positive blood work and a positive biopsy a month later. It was a total of 2.5 years from my first symptom that I was diagnosed at age 35. After I went gluten free and was for awhile, if I accidently got gluten I reacted horrible. I never had before while eating it. Your body will try to deal with things the best it can. When the problem is removed it starts to heal. When it is added back in it will attack with a vengence.

Then you have people who are silent celiacs and exhibit no overt problems even if the eat gluten or get cross contaminated. Damage is still being done in their bodies. Celiac/gluten intolerence puts us at higher risk for other autoimmune diseases also. Untreated celiac also raises the risk for cancers.

I don't think your doctor is trying to shoehorn you at all. He/she is better than most to even mention celiac, test for it, and recommend gluten free to you. So many people get the IBS diagnosis which is a total crock of a diagnosis. It is a set of symptoms. Yes their bowel is irritable because something is wrong. So many people that get the IBS lable slapped on them are probably undiagnosed celiac or gluten intolerent.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#4 Mordikar

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Posted 07 December 2011 - 05:58 AM

Thank you both very much for your insight and knowledge. I appreciate it very much. I suppose I'm just so violently opposed to having this (and loosing so much food I love) that I'm trying not to believe it. :(

Again thank you. I'll keep you posted on the results.
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#5 Skylark

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Posted 07 December 2011 - 09:25 AM

Count your blessings that you have a doctor good enough to figure out what's going on. A positive biopsy is pretty much diagnostic for celiac. You MUST try the diet even if the bloods come back negative. They may because you've only been celiac for 3 1/2 months, which isn't long.

The damage from undiagnosed celiac is truly terrible. Brittle bones from poor calcium absorption, nerve damage from B vitamin deficiencies, joint pain, thyroid problems. You can probably recover fully by changing your diet. I know gluten-free seems hard but there are some very good gluten-free pastas and eggs with gluten-free toast makes a lovely, nourishing breakfast. You'll have plenty to eat and feel much better.
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#6 Takala

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Posted 07 December 2011 - 11:19 AM

Real Mexican, Italian, et French cuisine have very little gluten.... the fact that you already cook will make it easier to switch to gluten free than someone who expects to be just fed or use a drive- thru fast food window (shudder.... :ph34r: )

Mexican you switch to gluten free indigenous foods of the Americas, such as quinoa, amaranth, corn, beans, squash.

Italian, you use rice pastas. Rice, vegetables, olive oil, fish, many cured hams, cheeses, olives, almonds.... all gluten free. You adapt to making your own pizza crust, and many restaurants now have a gluten-free option.

French food - the bread will need to be subbed, but most other stuff is already gluten free, sauces are easy to make gluten free.

Indian food is easy to make yogurt and cream based curry sauces for vegetables, served with rice, and use bean flours for the flatbreads.

Thai food with rice noodles is easy to make gluten free. So is Pho soup.

Lots of brands of rice crackers available to go with snacks.

Really not a limiting menu.
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#7 IrishHeart

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Posted 07 December 2011 - 11:24 AM

Kiddo,

Your doctor is not pushy, he's thorough. He's wonderful!! He's enlightened!! I would have given anything if my former GI had been so thorough. Mine mis-Dxed me for 12 years.

The "shroom", Roda and Skylark and takala speak the truth. I can't add much more to what they have said except, I was "mostly fine" too (IBS, GERD, MUSCLE and JOINT PAIN, Miscarriages, but "fine") ...until I wasn't. Then my life took a swan dive you cannot imagine in 2008 and I lost 3 years in pain hell trying to GET A DIAGNOSIS. That "trigger" Mushroom mentions? --flipped on ---and I was slowly dying. The bowel issues --which are horrid enough---are nothing compared to what happens if you do not know about gluten or if you ignore the diagnosis. I'll spare you the "deets" but just know, it's life altering.

Going gluten-free saved my life. :)

If you have celiac, do not despair.

There is life without gluten and many yummy alternatives. I promise you! ;)
Keep us posted!!
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"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 idiots could fly, the sky would be like an airport.”― Laura Davenport

"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. bliss-smiley-emoticon.gif


#8 Mordikar

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Posted 07 December 2011 - 12:15 PM

Again,

thank you all very very much. not only for the knowledge and advise but also for helping me correct my outlook on my dr, and on the possibility of having this condition. Here i should be thankful for a dr that is investigating, and for possibly catching this before it does severe dammage, and instead i'm griping because i don't want to give up pasta. :(

Thank you very much indeed.

Justin.
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#9 Skylark

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Posted 07 December 2011 - 01:43 PM

Again,

thank you all very very much. not only for the knowledge and advise but also for helping me correct my outlook on my dr, and on the possibility of having this condition. Here i should be thankful for a dr that is investigating, and for possibly catching this before it does severe dammage, and instead i'm griping because i don't want to give up pasta. :(

Thank you very much indeed.

Justin.

Gripe away. We all hated giving up pizza, pasta, real bread, donuts, etc. Everyone has foods they miss and it truly is a difficult change. I eat rice pasta happily but I've never found a substitute for crusty French bread. :unsure: You will find a lot of empathy on the board because we all struggle to some degree with the diet. Please feel free to seek whatever support you need. We're trying to make it a little easier by letting you know how fortunate you are to get a fast and accurate celiac diagnosis, but it's still a big deal and we understand that.

Welcome to the gluten-free club. Pass the rice pasta, willya? B)
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#10 IrishHeart

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Posted 08 December 2011 - 06:30 AM

Again,

thank you all very very much. not only for the knowledge and advise but also for helping me correct my outlook on my dr, and on the possibility of having this condition. Here i should be thankful for a dr that is investigating, and for possibly catching this before it does severe dammage, and instead i'm griping because i don't want to give up pasta. :(

Thank you very much indeed.

Justin.


Your concerns are very real, Justin --and you get to gripe big time!--we totally understand that!!! We vent on here all the time!

But here's the thing....You do not have to give up pasta. Just WHEAT pasta. There are rice and corn pastas that are DELICIOUS! There are breads, pizza crusts, pie doughs, cookies, even donuts...all of it....it's just not made from wheat flour.

We can help you with dietary advice later. Don't worry about that.
One step at a time.

Keep us posted!!!
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"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 idiots could fly, the sky would be like an airport.”― Laura Davenport

"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. bliss-smiley-emoticon.gif


#11 Mordikar

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Posted 09 December 2011 - 11:17 AM

Blood work was just taken and went oer my biopsy results.
He said here is something causing my intestines not to break down and process food properly.

Biopsy results:

non specific mild duodenal intraepithelial Lymphocytosis. Intact villi.

isolated finding is of uncertain significance, it could be related to clinically latent celiac sprue, nonsteroidal anti inflamitory drug use, infection (including helicobacter), lymphocytic colitis, stasis / bacterial over growth, and systemic autoimmune disease.


I begin my gluten free life tomorrow. I am trying to look on the bright side. All the pastas and breads have been keeping me from loosing much needed weight. I am 254lbs should be closer to 200 - 210lbs. So I also will be getting back to my exercise routine (starting slowly with the cardio and once i build hat back up i'll later add some light weights in) so this is a GOOD thing. really.

I'll let you know once the blood results come back.


He is also scheduling sonograms for my liver, gallbladder, etc just to make sure there are no additional issues there contributing to my symptoms.


~Justin
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#12 Celiac Maniac

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Posted 09 December 2011 - 12:24 PM

Blood work was just taken and went oer my biopsy results.
He said here is something causing my intestines not to break down and process food properly.

<snip>
~Justin


Hi Justin,

The biopsy results sound inconclusive and non-specific.

You can go gluten-free if you want to. It certainly won't hurt you. However, if your blood test comes back negative, you're not a celiac. Congratulations.

BTW, you may not lose weight on a gluten-free diet. I gained a couple pounds when I went gluten-free because my body suddenly started absorbing nutrients, but I lost 2 dress sizes because all that bloating when away.

I hope the best for you.

TK Kenyon
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#13 Roda

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Posted 09 December 2011 - 12:43 PM

Increased duodenal intraepithelial lymphocytes are usually seen in the very early stages of celiac. I'ts good news the villi are not damaged(yet). It is wise of your doctor to check other things out also. Sounds like he is being thorough. If, in the absence of the other mentioned conditions and even in the blood tests should come back negative, it is worth giving the diet a good try. Sometimes the body's reaction is the best test. Let us know what the blood tests say.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#14 love2travel

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Posted 09 December 2011 - 12:54 PM

Keep in mind that there is a high false negative rate in bloodwork (I have read up to 30%). Many people have had negative bloodwork and still feel that they have celiac or gluten intolerance. Not only that but there is a much higher false negative biopsy rate, too. One reason is that far too few biopsies are taken so it is missed.

BTW, you can make excellent scratch gluten free pasta. I've been so disappointed in most commercial gluten-free pastas that I have been in pursuit of that perfect recipe. Found it! Guests just could not believe it was gluten free. :P Can't find what you need at the store? Make it!
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#15 Mordikar

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Posted 09 December 2011 - 01:02 PM

BTW, you can make excellent scratch gluten free pasta. I've been so disappointed in most commercial gluten-free pastas that I have been in pursuit of that perfect recipe. Found it! Guests just could not believe it was gluten free. :P Can't find what you need at the store? Make it!


I'd love to hear it... I've been told by an Italian friend of mine that i'm "too italian" and won't appreciate the store bought pastas... we'll see. but i'm definitely game for making my own. (welcome back portabella mushroom and onion ravioli!!!)
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