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A Few Well Wishes Needed
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Well I've had radiology done to see if I've gall stones... No luck.  Now because I'm still having problems, my PCP is sending me specifically to a GI...He's asking the Gastrointestinal doc do a zillion tests, possibly including a biopsy to again get results for Celiac.  H pylori and allergies are all possibilities... I'm scared to death!  I've been looking for complete solutions for years.  So wish me luck and hope they find something!  Sometimes I feel like a Hypochondriac cause doctors can't find something, but I know I'm not!

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I hope you will get some definitive answers soon, and will get some direction.

 

When your test is negative, it doesn't mean your symptoms are not there, it means that they cannot be defined yet.  Many of us have been told it was all in our head.  Now, I can tell you that mine was in my head, my tail, and all over in between.  Keep on looking, because it isn't without a cause.

 

Get well soon!  ***

 

D

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Yeah my blood test for Celiac was negative, but that doesn't mean I don't have a gluten intolerance... Because I sure do...  If I didn't have a gluten problem, my cycle wouldn't have miraculously regularized when I stopped eating gluten... But I've got to figure out why I'm STILL feeling nauseous, and got soft sometimes diarrheatic stools.

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Absolutely!! You are NOT going crazy!! You know your body!! If your experiencing something and they cannot figure out why then it does not mean it is in your head! It is something but they just cannot put their finger on it!! Good luck!! I hope you find the answer !!! Huggzz!! 

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ARGH!  Just got the call from the GI to schedule my appointment... August 1st, I have to wait that long when I can barely eat anything?  NO FAIR!  I'm tired of not being able to eat without feeling sick... and I did actually vomit a bit yesterday!  SOMEONE HELP ME PLEASE!

 

I did get on the wait list for something sooner, but I doubt anything will happen.

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I know you had a baby not long ago. Could some of this be from hormones? They took about 6-7 months for me to get back to normal - I wasn't breast feeding. I think it takes a few months after you stop breast feeding. Just one more thing to think about?

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I asked my OB about it at my six-week pp appt, and he says no, which is why he directed me to my PCP in the first place... and they thought originally it could be gallstones because when they pressed on my gb I lept off the bed... Radiology showed nothing though... Wish it were as simple as hormones..

 

Edit:  Miracle of Miracles!  The wait list was worth it!!!! I got an appointment sooner!  Tomorrow at 1:45 US MST!!!!!!!!!! SOOOOOOOOOO Happy!

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*Sigh*  Here's what happened today:

Doc listened to my story.

Doc says, 'Well lets get you to the lab check your liver panel again.' (I'd recently had elevated enzymes...)

Doc says, 'Lets schedule you for an EGD and a colonoscopy'

I schedule appointments, get my labs done (which by the way, I had a HORRID phlebotomist or however you spell it...) and go home...

 

So basically, I know nothing more than what I did when I went in today... if the other tests show nothing, I'm going to be livid!!!!

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Okay, well, I had my colonoscopy/endoscopy on Tuesday along with a CT scan and blood draws...  (And the CT scan I had the IV done three times cause my veins kept rolling away!) Anyway, SO FAR this is what I know.

My colon/EGD turned up okay, however they did do some biopsies. Only noteworthy thing on the biopsies from what the report says is I have a 'mild case of chronic esophagitis'.
CT showed a bit of my liver being 'thick'.
Blood tests still show elevated enzymes, and disaccharide tissue testing shows maltase, sucrase, palatinase are all abnormally high.

 

Still waiting for doctor to review results and decide what that means and what he'll do.

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lol @ veins rolling away, I average about 4 needle sticks for every one that goes in and I have blood drawn every second week.. it gets old pretty fast.

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Good Morning!

Sliding into this thread late...

Just wanted to say hang in there....you already know gluten is an issue...just because docs don't run the right tests at the right time does not mean you are not celiac or at least NCGS.

Curious if your elevated liver enzmes have decreased during your time gluten-free. Mine took about a year gluten-free to return to normal levels.

Also....as you go through this process....as your doc runs more test that show abnormal results....unless you have previous results for comparison the information can be very scary...if you aren't make sure you get written/electronic copies of every test....so that you can know the exact numbers...not just what your doctor and his staff share with you.

Hang in there :)

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Absolutely!! Hang in there!! I wish you all the luck!! I know it is hard looking for a diag. But ya gotta do it!!! You may be Celiac or sensitive or what ever to Gluten, but you may have some other stuff going on! Just try your hardest to do what ya gotta do sweetie!! Huggs and good luck...

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Oh how I can relate to the rolling veins!  I have to go in for an Endoscopy and Colonoscopy and am dreading the prep for it.  I think I'm gonna have a miserable 48 hours.  I also have elevated liver enzymes.  But I am overweight and from what I have read, most people who are overweight do have a fatty liver and that can cause elevated enzymes.

 

Gluten isn't my problem but I do have multiple food intolerances.  Yesterday was especially frustrating because just before I went to bed I became sick to my stomach.  No clue what could have caused that because I ate foods that I normally can easily digest and nothing was suspect.  I did wake up a few hours after I'd finally gotten to sleep (because I was so uncomfortable) with that icky taste in my mouth that indicated that something had come up while sleeping and I likely swallowed it.  So yeah.  Frustrating.

 

At least now I am good most of the time.  Turns out that I can't have things like mint, tarragon, lovage, thyme, cloves, chicken, fish and shellfish.  So all those times that I thought I was eating a safe meal for my tummy by eating chicken soup with rice, I wasn't.

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Good Morning!

Sliding into this thread late...

Just wanted to say hang in there....you already know gluten is an issue...just because docs don't run the right tests at the right time does not mean you are not celiac or at least NCGS.

Curious if your elevated liver enzmes have decreased during your time gluten-free. Mine took about a year gluten-free to return to normal levels.

Also....as you go through this process....as your doc runs more test that show abnormal results....unless you have previous results for comparison the information can be very scary...if you aren't make sure you get written/electronic copies of every test....so that you can know the exact numbers...not just what your doctor and his staff share with you.

Hang in there :)

No, liver enzymes being elevated is a new thing, as of 3 months ago.  They thought it was cause I was at risk for pre-eclampsia, but I had my baby right after I had the first enzyme test done, and 3 months later, I still have enzymes high.  And yeah, I do have copies of all my results.  All my labs get put online on my patient portal and testing too, as long as its done through this hospital group.  So that's actually how I already know my results, my doc just hasn't called to tell me what his diagnosis is.

 

 

Oh how I can relate to the rolling veins!  I have to go in for an Endoscopy and Colonoscopy and am dreading the prep for it.  I think I'm gonna have a miserable 48 hours.  I also have elevated liver enzymes.  But I am overweight and from what I have read, most people who are overweight do have a fatty liver and that can cause elevated enzymes.

 

Gluten isn't my problem but I do have multiple food intolerances.  Yesterday was especially frustrating because just before I went to bed I became sick to my stomach.  No clue what could have caused that because I ate foods that I normally can easily digest and nothing was suspect.  I did wake up a few hours after I'd finally gotten to sleep (because I was so uncomfortable) with that icky taste in my mouth that indicated that something had come up while sleeping and I likely swallowed it.  So yeah.  Frustrating.

 

At least now I am good most of the time.  Turns out that I can't have things like mint, tarragon, lovage, thyme, cloves, chicken, fish and shellfish.  So all those times that I thought I was eating a safe meal for my tummy by eating chicken soup with rice, I wasn't.

 

I'm only slightly overweight, but that's mostly cause of pregnancy, I'm still working off that weight, and its fading fast since I can't eat anything.  And good luck with the Colon/Endo prep. Its a beast!  (Though gotta say, the procedure itself was a piece of cake by contrast).  However, as for what you can't eat, that's awful!  I discovered a couple years ago, rosemary does the same thing to my mouth gluten does!  (It cracks the corners of my lips)  And it also makes my throat constrict.  Which means a lot of italian food is ruled out unless I make it myself.  I also think I have a problem with corn, plus I'm fairly certain dairy is giving me hell.  Obviously though there is something more since I'm still not well, and frankly, I cannot eat without being nauseated or achy.

 

lol @ veins rolling away, I average about 4 needle sticks for every one that goes in and I have blood drawn every second week.. it gets old pretty fast.

What the heck are you going in that often for?

 

 

Meanwhile, I think I might call my doctor's office because this is getting absolutely ridiculous, I NEED to eat something more!  But physically my body is unable too, and now I'm tired, weak, sore, braindead... I'm pretty sure soon I'll be lucky to remember my own name!

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What the heck are you going in that often for?

 

 

 

 

My doctor and I are trying to find a cure to Kimura's disease.. :) So every two to four weeks we try something new and compare my bloods to how they were before the test. You need to do even more tests that often if you are on powerful drugs to make sure your kidneys don't crash, although I haven't tested drugs that strong yet, I will be soon. These two weeks I'm doing before and after of 3 million units per day of Nytastin (anti candida), next test after that is Ketotifen. If we see a real improvement in the lab results then I use it longer term, if not, it goes to the rubbish. The only things that have passed the test so far are Zyrtec and Loratadine. But I'll give you the tip now (3 days in) that Nystatin is looking good to stay long term

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My doctor and I are trying to find a cure to Kimura's disease.. :) So every two to four weeks we try something new and compare my bloods to how they were before the test. You need to do even more tests that often if you are on powerful drugs to make sure your kidneys don't crash, although I haven't tested drugs that strong yet, I will be soon. These two weeks I'm doing before and after of 3 million units per day of Nytastin (anti candida), next test after that is Ketotifen. If we see a real improvement in the lab results then I use it longer term, if not, it goes to the rubbish. The only things that have passed the test so far are Zyrtec and Loratadine. But I'll give you the tip now (3 days in) that Nystatin is looking good to stay long term

 

 

What's Kimura's disease?  And holy cow, that's a lot of Nystatin!   My son has to take that for his thrush!  Can't imagine 3 million units a day!  Must be expensive!  I hope it all goes well for you!

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Phone cord... Why oh why did I forget you?  Rather, why did I forget to charge my phone last night!  I hope and pray doc calls once my phone is plugged in... And pretty much the instant its plugged in.  If not... that's it.  I'm calling!  I AM TIRED OF WAITING!

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What's Kimura's disease?  And holy cow, that's a lot of Nystatin!   My son has to take that for his thrush!  Can't imagine 3 million units a day!  Must be expensive!  I hope it all goes well for you!

 

Indeed what is Kimura's disease.. You could ask that to ten thousand doctors and I doubt more than one would know what it is and even the one that knew what it was would have no idea what it is... lol. The actual answer is, not a single qualified person on this planet has a clue what it is.. unfortunately.

 

Of course I'm 100% sure it's related to leaky gut as the blood work with high IgE and Eosinophilia is just too similar. If you asked me what is Kimura's disease today. I would tell you this..

 

Kimura's disease is an inflammatory benign condition that mimics several malignant conditions. The Kimura tumour itself is a lymph node or gland that has been "enhanced" by some ancient human genetic ability to help filter excessive amounts of Eosinophils and reactive cells in the blood, it's sponge like filled with pockets of Eosinophils and other broken down immune cells, surrounded with vascular structures, all this becomes more enhanced and more vascular as the years go by. The surrounding unmodified lymph nodes are enlarged to cope with the eventual drainage which happens daily once you are up and moving. High IgE levels correlate exactly to the high eosinophil level in the blood (less IgE is less eosinophils). It's a hypersensitivity towards TH2 immunity caused by a bacterial / fungal imbalance to "something" or you should probably say to "almost everything" ie.. it is leaky gut + a enhanced tumour/node + an immune system shift. That's from my perspective having it and having read every research paper about it. Although my version is quite a bit different to the papers :).

 

3 million units a day of Nystain is about $22 per week, that's ok because I'm only taking it for two weeks as a test. It's giving me a little bit of a headache but not so bad. I actually found 4 other people with Kimura's disease in the world so far and talked to them online, very interesting!. I've read more or less every published paper about it and talking to other people with it still blew my mind with how similar their stories are with long diagnosis times excessive testing and thinking they had a terminal cancer for the entire time it took to diagnose (it averages 8 years for Kimura's diagnosis). In the end it's pretty much a terminal disease anyway although a very slow one.

 

The good news is it's been cured ONCE and that was with a single injection of IVIg, which caused an immune system shift back towards TH1, unfortunately IVIg is $15,000 a shot and due to the rarity of cases and not knowing if it'll work on other people it hasn't been tried again yet.

 

You can get a bit of a laugh out of it though, I go to so many doctors and they all get a verrrrrrrrrry confused look on their face. I was supposed to have a ultrasound guided biopsy on my neck last week because I went to a new doctor and the imaging guy got so freaked out after looking on the ultrasound he wouldn't do it and sent me home.. This kind of thing happens all the time. It _looks_ really dodgy on the scans but what the doctors can't see and don't know is that sometimes it's almost gone, other days it's 10 times the size it was when I saw them. The week after it maybe small again... Even I don't know how it will be on an particular day. But I do know it's very reactive (to an unknown stimulus, that I and no one else have ever been able to pinpoint) and NOT a solid mass of dodgyness. All my 4 fellow sufferers say the same yet that is never mentioned in medical papers about it. Because the doctors that write the papers only see the person one week here, one week there.. and write the paper, they aren't in the mirror seeing what is what every day :).

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Hassled my doc on Thursday afternoon... They didn't have the results from the hospital yet, so they said that they'd hassle the hospital for them, and then get back to me.  Granted they really only had one business day between then and now (Friday) but STILL I'm frickin annoyed!  If I don't get news today, I'm seriously contemplating checking myself into the hospital!  I've only been able to eat at MOST one meal a day!

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    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
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