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Paigemaster

Having 'Celiac/Crohns Enzymes'

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Hello. I apologize for this being long but I feel I should explain the situation so you better understand where I'm coming from. I am here because I do not have the time or money to be galavanting around to different doctors offices. I spent time doing that already, lost money out of my pay from not working but never found A SINGLE ANSWER. 

I am a 23 year old female and back when I was about 13-14 I was diagnosed with Mononucleosis. Prior to this, I had been having other issues, or at least the minor problems I had previously considered as 'growing pains' since that's what my primary at the time attributed my pains to. Well now i'm 23 and it's only gone downhill since then. Back then I was told by a GI doctor who had done two or three EDG's and two colonoscopies that I have "the enzymes for crohn's and need to be careful." No other explanation other than eat 'gluten free'..... Now, this was kind of when it was the new 'health fad' for people, so being so young my logic was 'I'm young, I should be able to do what I want and eat what I want without worry!" so that's what i continued to do, despite feeling overall unwell. (I had really always felt unwell so it wasn't really that big of a deal for me) 

Now that i'm older, i've literally experience an entire swath of issues. The only reason I am here is because I am now thinking back to that conversation with the GI Doctor that maybe she was right. While I do have insurance, I honestly don't really have the money to be shelling out for these tests all over again as I was lucky the first time around when my grandparents had taken me since I was underage. 

My symptoms over the years and continuing have been: (in full, some may have nothing to do with the another)
Lower back problems, feeling like sciatica but never confirmed. X-rays, MRIs, etc show nothing despite the intense pain. Drs now refuse to do more tests for 'nothing'. So I am left to handle feeling like an elephant is sitting on my lower back, right above my tailbone. (I did fall on that around 12 or 13 but doc never called back after testing, assumed i was fine...)
Stomach cramping/spasm feelings
On and off nausesa, any time of day.
Inability to sleep. 
Constant changes from hot to cold. (Original doctor has said over the years my temperature seems to run higher than normal. I almost always feel feverish even if only slightly.)
Headaches/migraines
Fatigue
Lightheadedness at times
Restless legs (DRIVES. ME. INSANE. The muscle relaxers i've been given just made it 1000000x worse! I was so sleepy but couldn't fall asleep due to the restlessness.)
On and off diarrhea / constipation (I don't know what a 'normal' bowel movement is)
Costochondritis that has come and gone since I was in 4th grade. (I remember the day because it was April Fools day and everybody thought I was faking the serious pain I was in. I could barely breathe, it felt like my tendons/muscles were being torn apart on the inside) .  I believe this is what my original DR thought was 'growing pains', except they never stopped even after I was finished growing..
I used to get sick very easily - for about two years it seemed to clear up then i started getting infections non-stop.
There are some .... embarrassing things... Such as despite how many times I clean myself I feel like i'm.... leaking.......... 
Sharp/ache like pains everywhere in my body.
There are likely many other things that I'm just so used to I'm not listing because I'm not sure if they're even related.




I am just so tired of feeling like dog crap. I've never felt 100%, ever. For as long as I can remember i've always had issues but I come from a family that kind of just.... deals with their problems and not complain 24/7. After years of that, I need help. I am absolutely fed up not being able to do things because I just feel generally crappy. It's seriously depressing and making my depression and anxiety worse.

Is testing for a second time worth it?

If it is, what tests should I really be focusing on to figure out if this is my problem?

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I'm sorry about everything you're going through. I have only a few answers to provide but I want to say that my boyfriend is almost exactly the same and it is extremely challenging finding help from doctors. He is 20 and has almost word for word the exact same systems, including the costochondritis which surprised me! It wasn't until I did extensive research and a strange CT scan result that the Dr never followed up on that I figured out it was likely celiacs. After testing by being 100% gluten free and comparing it to when he has gluten I'm about positive now, still awaiting Dr confirmation though. Maybe you two could talk about each others experiences and what you have tried, it's always good to talk with someone in the exact same boat, and we can try to figure it out together. 

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4 hours ago, Paigemaster said:

Hello. I apologize for this being long but I feel I should explain the situation so you better understand where I'm coming from. I am here because I do not have the time or money to be galavanting around to different doctors offices. I spent time doing that already, lost money out of my pay from not working but never found A SINGLE ANSWER. 

I am a 23 year old female and back when I was about 13-14 I was diagnosed with Mononucleosis. Prior to this, I had been having other issues, or at least the minor problems I had previously considered as 'growing pains' since that's what my primary at the time attributed my pains to. Well now i'm 23 and it's only gone downhill since then. Back then I was told by a GI doctor who had done two or three EDG's and two colonoscopies that I have "the enzymes for crohn's and need to be careful." No other explanation other than eat 'gluten free'..... Now, this was kind of when it was the new 'health fad' for people, so being so young my logic was 'I'm young, I should be able to do what I want and eat what I want without worry!" so that's what i continued to do, despite feeling overall unwell. (I had really always felt unwell so it wasn't really that big of a deal for me) 

Now that i'm older, i've literally experience an entire swath of issues. The only reason I am here is because I am now thinking back to that conversation with the GI Doctor that maybe she was right. While I do have insurance, I honestly don't really have the money to be shelling out for these tests all over again as I was lucky the first time around when my grandparents had taken me since I was underage. 

My symptoms over the years and continuing have been: (in full, some may have nothing to do with the another)
Lower back problems, feeling like sciatica but never confirmed. X-rays, MRIs, etc show nothing despite the intense pain. Drs now refuse to do more tests for 'nothing'. So I am left to handle feeling like an elephant is sitting on my lower back, right above my tailbone. (I did fall on that around 12 or 13 but doc never called back after testing, assumed i was fine...)
Stomach cramping/spasm feelings
On and off nausesa, any time of day.
Inability to sleep. 
Constant changes from hot to cold. (Original doctor has said over the years my temperature seems to run higher than normal. I almost always feel feverish even if only slightly.)
Headaches/migraines
Fatigue
Lightheadedness at times
Restless legs (DRIVES. ME. INSANE. The muscle relaxers i've been given just made it 1000000x worse! I was so sleepy but couldn't fall asleep due to the restlessness.)
On and off diarrhea / constipation (I don't know what a 'normal' bowel movement is)
Costochondritis that has come and gone since I was in 4th grade. (I remember the day because it was April Fools day and everybody thought I was faking the serious pain I was in. I could barely breathe, it felt like my tendons/muscles were being torn apart on the inside) .  I believe this is what my original DR thought was 'growing pains', except they never stopped even after I was finished growing..
I used to get sick very easily - for about two years it seemed to clear up then i started getting infections non-stop.
There are some .... embarrassing things... Such as despite how many times I clean myself I feel like i'm.... leaking.......... 
Sharp/ache like pains everywhere in my body.
There are likely many other things that I'm just so used to I'm not listing because I'm not sure if they're even related.




I am just so tired of feeling like dog crap. I've never felt 100%, ever. For as long as I can remember i've always had issues but I come from a family that kind of just.... deals with their problems and not complain 24/7. After years of that, I need help. I am absolutely fed up not being able to do things because I just feel generally crappy. It's seriously depressing and making my depression and anxiety worse.

Is testing for a second time worth it?

If it is, what tests should I really be focusing on to figure out if this is my problem?

Any medical doctor can help rule out celiac disease.  It is a simple blood test.  You do need to be consuming gluten for the testing to work.  Learn more:

http://www.cureceliacdisease.org/screening/

 

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The full celiac panel includes:

TTG IGA

TTG IGG

DGP IGA

DGP IGG

EMA

IGA

 

You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp.

Personally I'd make an appointment at the gastro so they can order their other blood tests and just insist on the full celiac panel also. There's any number of things it could be, not just celiac. If you don't get diagnosed you probably won't stick with a 100 percent gluten free diet for the many months required to see if it works.

Good luck in your search.

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On 7/27/2017 at 8:48 AM, tessa25 said:

The full celiac panel includes:

TTG IGA

TTG IGG

DGP IGA

DGP IGG

EMA

IGA

 

You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp.

Personally I'd make an appointment at the gastro so they can order their other blood tests and just insist on the full celiac panel also. There's any number of things it could be, not just celiac. If you don't get diagnosed you probably won't stick with a 100 percent gluten free diet for the many months required to see if it works.

Good luck in your search.

Thank you very much for your response, I really appreciate it!!!

I went to a GI doc after consulting my primary about it again and the GI rushed me in due to my throwing up excessively, he ordered an endoscopy the next day. From this he found out I have gastroparesis, which was likely missed the last two times they did an endoscopy with a pediatric GI doc because they had found ulcers at the time. Either A) I developed it recently or B.) That's what's been causing my issues all this time and due to the ulcers nobody noticed my stomach muscles not contracting as they should. Who knows, but what I do know is that I went from 138 to 126lbs and within the last week i've dropped to 124 and still declining. The weight loss is absolutely unintentional and not been able to absorb anything from what I do eat due to it not getting digested. It either comes back up or moves too fast to absorb. Hoping they find something with the bloodwork and stool samples they took.

Glad to know that I wasn't crazy for not being a huge fan of fiber. For years people said I needed more fiber to 'help me go' but it turns out the high fiber is what's murdering my digestive system, I am unable to digest the amounts I was previously advised to ingest to 'stay healthy'.

DEFINITELY listen to your own body when it comes to what's good for you and what isn't. EVERYONE told me to increase my fiber intake because my complaints seemed to be 'fiber related' and it turns out fiber is horrible for me. 

 

I also found out in the last week from an Xray that the doc also ordered that I have spondylosis and retrolisthesis L4-L5. 

I had an ultrasound of my stomach, gallbladder, liver and pancreas this morning. Should know more within two days.

Edited by Paigemaster

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5 minutes ago, Paigemaster said:

Hoping they find something with the bloodwork and stool samples they took.

I just wanted to say that regardless of what test results you get give serious thought to going properly gluten free once testing is complete. I suffered almost 20 years of sciatic back pain along with many of the other symptoms you list above and only found relief once I removed gluten from my diet. I went back on for testing, results were negative for celiac, but the symptoms returned when the gluten did. That was enough for me to avoid it for life. 

Some doctors will take a negative blood and endoscopy as evidence to say you can eat gluten without worrying. This is NOT the case for some people. So please bear that in mind!

Best of luck :)

Mat

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