end of my rope

[ironictruth]

Saturday, I made it through swim lessons and errands at Target with my son before breaking down quietly in tears from the pain, nausea and dizziness. Yesterday, my boyfriend sat and watched helplessly as I started to deteriorate and try to physically and emotionally keep myself together while my son played at a kids museum. He kept on eye on my son when we got home so I could break down for a few minutes in the bathroom. Last night, my little guy crawled into bed with me and fell back asleep. I lay there quietly crying, in pain and praying, which I never do. 

I increased my life insurance policy and wrote my son a letter. 

Not because I plan to hurt myself, but because I am pretty damn sure my doctors will kill me before they figure out what is wrong with me. 

I am at the end of my rope. No sick leave left, I can feel my sanity starting to slip a bit each day. I am doing everything in my power to hold on to it. 

I used to jump out of bed in the morning, not enough cares in the world really, or at least not the right ones, and not enough appreciation for my health. As things began to decline health wise last winter I began to get extremely nervous. I never did well with doctors.  I was once told that I was in false labor and wasn't going to be able to handle a real labor. Turns out I had an infected bile duct and 13 gallstones. I was 17.  An epidural and 9 Lb 14 ounces baby boy later, having a baby was a breeze compared to the couple months I walked around in agony with that stupid bile duct.  I placed the child for adoption to a loving home. My second delivery they told me I was not in labor and sent me home. My water immediately broke and I turned back and went to the hospital. They continued to tell me that it was too early. By the time I started shaking I told them it was too late. So I delivered a 9 Lb 8 ounce baby boy with shoulder dystocia and no drugs.  I had one doctor jumping on my stomach practically and another one with their arms very far inside me trying to get my child out from behind my hip bone.

 I got carjacked once in my early twenties. I jumped out of the vehicle with my seatbelt still on and the man who took the car dragged me down the road before he hit another parked car and ran off.  That night I saw my life flash before my eyes. 

 But this last year has been the most traumatizing. And the last couple months have been the worst.

 The right side of my neck hurts and is tender to touch. I sometimes can feel the pain in my ear. A thyroid ultrasound shows inflammation.  But the neck is tender above the thyroid as well. An old primary care doctor ordered antibody levels which came back negative for Hashimotos.  I went to see an endocrinologist.  His office tried to cancel a follow-up thyroid ultrasound I was supposed to have during my appointment. That was a red flag to me.  I have never had a procedure cancelled 5 minutes before it was scheduled before. Then they told me I had Hashimoto's disease. When I asked for the blood work to support this they told me that they were relying on the old primary care doctor's blood work So they were not allowed to release it to me. I told Them those results were negative. The Nurse informed me the doctor didn't go by those reference ranges.  apparently if your Rangers are over one he thinks you have Hashimoto's disease. Mine were at 10 on A 1 to 34 reference range for the lab.

 My stomach hurts all of the time. If I touch the middle upper area or the right hand side by the ribs it hurts.  I also have a low-level nausea most of the day. And a strange feeling in my head almost like a bacteria has infected both my gut and my head, just an odd dizziness sensation.  I can still eat, in fact I have to or I will feel much worse. In August they found duodenitis on endoscopy, but that was it.  They found it 10 days after some other doctor did an EUS and told Me my duodenum looked fine, in a very condescending manner.

 The pain has increased greatly since August.  I get a strange rash on my stomach now too. It's as if something from the scope aggravated things even more. Liver and pancreas have been viewed and they look fine.

 They found an elevated DGP in August on a combined assay. but come to find out when you separate the test and do the IGA and IGG individually I did not test positive on either. I only had a couple of mild positive DGP IGA Tests at the beginning of all of this about a year ago.  is board provided me with a link to the FDA decision summaries on these tests. I was able to find some comparison. Of the few folks who tested negative on the separate test but positive on the combined test they were either celiacs on a gluten-free diet or a first-degree relative of a Celiac.

 But then I drove 5 hours to see a Celiac specialist recently.  They told me to disregard the DGP test. That they rely on other tests.  This confuses me as much as the Hashimoto's  diagnosis that I do not have. Everything I've read about the DGP says that it's fairly accurate. But obviously if you can get a positive on a combined test one-day and negatives on other tests the next day, there's room for improvement.  The five hour drive basically ended in them telling me they wanted to review my pathology results and I might have to do another gluten challenge.  They told me to take omeprazole and an antidepressant.

 My local GI doctor had given me Protonix and I was on it for 6 weeks  with no instruction on when to stop or how to stop. It did nothing. After I went off of it he gave me a pH monitor test which shows I do not have GERD.  He also told me to take an antidepressant for pain.

 So now I'm being told to take a PPI yet again even though apparently I do not have acid reflux.

Has anyone on these boards taken an antidepressant for pain and had it actually be effective? I find it very strange that just touching certain areas of my stomach makes me really really cringe in pain.  it feels like there is some kind of Tear or sore in the middle area. And then it's just sore on the right hand rib side.

 My eyes have started to bother me as well. I got a lot of stabbing pain in them. I never had this before either. My left leg, which had been hurting, now has a strange buzzing vibration sensation in it.

 I know that the stress and anxiety is making things a lot worse. I have a PRN for Xanax and I hate using it because of the potential withdrawal symptoms but it does take the edge off the pain. My GI wanted me to take an antidepressant medication that has a lot of side effects and should not be used in people with heart arrhythmias. I have had a lot of heart palpitations. And one instance of an arrhythmia. It also should not be used with eye issues or low magnesium. 

I am at a loss for what to do. If I continue down this road I will lose my job, a career I love and worked hard to earn, but one that I have been declining in productivity with. 

 This started out with a lot of strange sensations, dizziness, a weird feeling in my stomach, pain in my neck, pain in my shoulder.  I would also have episodes of feeling extremely unwell which actually I found were resolved by eating. Even though I didn't feel hungry at the time.  my old primary care doctor blamed these on anxiety but one time I took my blood pressure and my heart rate was 50 during one of these episodes.  when I begin to feel this way once in the hospital a doctor also listen to my heart rate and it was slow. At the time my protein was also Low though.

 For months during this sickness I would still exercise and run. I was able to do that right up until roughly the third week of July when the pain and the nausea was so bad even walking on a treadmill was ridiculous.

Whatever this is, seems to be traveling from my gut to my brain...and I mean a physical sensation in the brain, not just the anxiety of feeling like s$#&.  But a strange subtle pressure and dizziness. Dizziness is really not the right word. 

 I know it sounds crazy but I also have some pain in my tooth. I had a cavity filled a couple of months ago. But the pain persisted. I went back and the dentist reset It. He told me if it persisted that it was highly unlikely, but it could be a dead tooth.  It has been the least of my worries since the pain only occurs when I bite down anyway. But then when you're desperate for answers I couldn't help but think could this all be a freaking tooth?

 I Am My Own Worst Enemy.  I research things out of desperation and sometimes that comes out when I'm speaking with doctors so they think I'm crazy.  I am now trying to keep a cap on that.  but it was funny because as I was sitting waiting for the Celiac specialist my local GI doctor  Call to go over some test results and then kept saying maybe I was just hyper sensitive to having mild Celiac, referencing the same blood work that the Celiac specialist came in and disregarded.

 My sickness has been getting worse over the course of the last 11 months. That realization is the thing that makes me cry at night. I worry about my son growing up without a mom. 

 I am so f****** pissed off. It seems like you bounce from specialist to specialist and no one can find anything. I mean they find inflammation in the intestines I find inflammation in the thyroid I feel like there's inflammation in my eyes and in my brain now to. And the Gut hAs just gotten significantly worse since August.  And that is one of the things that really annoys me. It's like the doctors seem to go by The Endoscopy in August and they're like oh you just had Duodenitis. In January my scope Was completely normal.  I think they just assumed because there was some inflammation and nothing else going on in August that everything's fine now. But I swear to God if  they scoped me again now thEy would find more. Because it is so much worse. 

 it's a long story, but I somehow managed to speak with an endocrinologist I've never met and probably will never meet  on the phone. After telling him about my normal thyroid levels, my normal thyroid antibody, but the comments of my endo, the pain and ultrasound,  he told me it did not sound like Hashi's but possibly another disease process and referred me back to my primary care.

 I really truly am at the end of my rope. I live in Upstate New York. If anyone knows of any decent doctors who actually know how to put puzzle pieces together and listen to patieNts, I am open to any suggestions at this point.

 

[Ennis-TX]

All I can do is say I will pray for you, there is so much it could be from all the things your are listing I do not know even where to begin. Sounds like the hell I went through 3-4 years ago where I thought I was literally dying and running a bucket list on my good days. It really helps to come out like you did (I vented about my mental breakdowns here it really does help), and I hope someone here can give you a better response and refer you to a doctor that can truly help find your issues. Hang in there, keep thinking positive and about things you need to do in your life that you need to keep living for. I found putting goals and purposes in my life helped me get through those days, and set aside a day off to just go do something relaxing.

[ironictruth]

28 minutes ago, Ennis_TX said:

All I can do is say I will pray for you, there is so much it could be from all the things your are listing I do not know even where to begin. Sounds like the hell I went through 3-4 years ago where I thought I was literally dying and running a bucket list on my good days. It really helps to come out like you did (I vented about my mental breakdowns here it really does help), and I hope someone here can give you a better response and refer you to a doctor that can truly help find your issues. Hang in there, keep thinking positive and about things you need to do in your life that you need to keep living for. I found putting goals and purposes in my life helped me get through those days, and set aside a day off to just go do something relaxing.

Ennis, did you get a diagnosis, treatment and start to feel better?

[Ennis-TX]

After 7 doctors I got the diagnosis, with others mixed in . But going gluten free completely has helped a lot, along with finding out my allergies, and what foods I was intolerant to.  No more constant puking and gut pain, and best of all the I had major mind fog issues that were driving me insane where my own mind would turn against me and I could not do simple task I knew I should be able to are gone. Could not think about things, my mind would just loop like a broken record. And my hands would lose all coordination at random along with the feeling (Still do not have feeling back completely). I ended up seeming to have permanently lost my ability to process complex math problems and do computer programming. Anyway back to putting on weight now and and I know the cause of my other issues, just dealing with a few complications that have arisen now from not dealing with it sooner. And this community has been a big moral support, along with leading me to try applying some things I have read here about supplementation, and practices that have lead to a overall improvement.

And I have a new GI myself right now who just arranged for a bunch of blood test and scopes. SO going to need luck and prayers myself lol.

[cstark]

6 hours ago, ironictruth said:

Saturday, I made it through swim lessons and errands at Target with my son before breaking down quietly in tears from the pain, nausea and dizziness. Yesterday, my boyfriend sat and watched helplessly as I started to deteriorate and try to physically and emotionally keep myself together while my son played at a kids museum. He kept on eye on my son when we got home so I could break down for a few minutes in the bathroom. Last night, my little guy crawled into bed with me and fell back asleep. I lay there quietly crying, in pain and praying, which I never do. 

I increased my life insurance policy and wrote my son a letter. 

Not because I plan to hurt myself, but because I am pretty damn sure my doctors will kill me before they figure out what is wrong with me. 

I am at the end of my rope. No sick leave left, I can feel my sanity starting to slip a bit each day. I am doing everything in my power to hold on to it. 

I used to jump out of bed in the morning, not enough cares in the world really, or at least not the right ones, and not enough appreciation for my health. As things began to decline health wise last winter I began to get extremely nervous. I never did well with doctors.  I was once told that I was in false labor and wasn't going to be able to handle a real labor. Turns out I had an infected bile duct and 13 gallstones. I was 17.  An epidural and 9 Lb 14 ounces baby boy later, having a baby was a breeze compared to the couple months I walked around in agony with that stupid bile duct.  I placed the child for adoption to a loving home. My second delivery they told me I was not in labor and sent me home. My water immediately broke and I turned back and went to the hospital. They continued to tell me that it was too early. By the time I started shaking I told them it was too late. So I delivered a 9 Lb 8 ounce baby boy with shoulder dystocia and no drugs.  I had one doctor jumping on my stomach practically and another one with their arms very far inside me trying to get my child out from behind my hip bone.

 I got carjacked once in my early twenties. I jumped out of the vehicle with my seatbelt still on and the man who took the car dragged me down the road before he hit another parked car and ran off.  That night I saw my life flash before my eyes. 

 But this last year has been the most traumatizing. And the last couple months have been the worst.

 The right side of my neck hurts and is tender to touch. I sometimes can feel the pain in my ear. A thyroid ultrasound shows inflammation.  But the neck is tender above the thyroid as well. An old primary care doctor ordered antibody levels which came back negative for Hashimotos.  I went to see an endocrinologist.  His office tried to cancel a follow-up thyroid ultrasound I was supposed to have during my appointment. That was a red flag to me.  I have never had a procedure cancelled 5 minutes before it was scheduled before. Then they told me I had Hashimoto's disease. When I asked for the blood work to support this they told me that they were relying on the old primary care doctor's blood work So they were not allowed to release it to me. I told Them those results were negative. The Nurse informed me the doctor didn't go by those reference ranges.  apparently if your Rangers are over one he thinks you have Hashimoto's disease. Mine were at 10 on A 1 to 34 reference range for the lab.

 My stomach hurts all of the time. If I touch the middle upper area or the right hand side by the ribs it hurts.  I also have a low-level nausea most of the day. And a strange feeling in my head almost like a bacteria has infected both my gut and my head, just an odd dizziness sensation.  I can still eat, in fact I have to or I will feel much worse. In August they found duodenitis on endoscopy, but that was it.  They found it 10 days after some other doctor did an EUS and told Me my duodenum looked fine, in a very condescending manner.

 The pain has increased greatly since August.  I get a strange rash on my stomach now too. It's as if something from the scope aggravated things even more. Liver and pancreas have been viewed and they look fine.

 They found an elevated DGP in August on a combined assay. but come to find out when you separate the test and do the IGA and IGG individually I did not test positive on either. I only had a couple of mild positive DGP IGA Tests at the beginning of all of this about a year ago.  is board provided me with a link to the FDA decision summaries on these tests. I was able to find some comparison. Of the few folks who tested negative on the separate test but positive on the combined test they were either celiacs on a gluten-free diet or a first-degree relative of a Celiac.

 But then I drove 5 hours to see a Celiac specialist recently.  They told me to disregard the DGP test. That they rely on other tests.  This confuses me as much as the Hashimoto's  diagnosis that I do not have. Everything I've read about the DGP says that it's fairly accurate. But obviously if you can get a positive on a combined test one-day and negatives on other tests the next day, there's room for improvement.  The five hour drive basically ended in them telling me they wanted to review my pathology results and I might have to do another gluten challenge.  They told me to take omeprazole and an antidepressant.

 My local GI doctor had given me Protonix and I was on it for 6 weeks  with no instruction on when to stop or how to stop. It did nothing. After I went off of it he gave me a pH monitor test which shows I do not have GERD.  He also told me to take an antidepressant for pain.

 So now I'm being told to take a PPI yet again even though apparently I do not have acid reflux.

Has anyone on these boards taken an antidepressant for pain and had it actually be effective? I find it very strange that just touching certain areas of my stomach makes me really really cringe in pain.  it feels like there is some kind of Tear or sore in the middle area. And then it's just sore on the right hand rib side.

 My eyes have started to bother me as well. I got a lot of stabbing pain in them. I never had this before either. My left leg, which had been hurting, now has a strange buzzing vibration sensation in it.

 I know that the stress and anxiety is making things a lot worse. I have a PRN for Xanax and I hate using it because of the potential withdrawal symptoms but it does take the edge off the pain. My GI wanted me to take an antidepressant medication that has a lot of side effects and should not be used in people with heart arrhythmias. I have had a lot of heart palpitations. And one instance of an arrhythmia. It also should not be used with eye issues or low magnesium. 

I am at a loss for what to do. If I continue down this road I will lose my job, a career I love and worked hard to earn, but one that I have been declining in productivity with. 

 This started out with a lot of strange sensations, dizziness, a weird feeling in my stomach, pain in my neck, pain in my shoulder.  I would also have episodes of feeling extremely unwell which actually I found were resolved by eating. Even though I didn't feel hungry at the time.  my old primary care doctor blamed these on anxiety but one time I took my blood pressure and my heart rate was 50 during one of these episodes.  when I begin to feel this way once in the hospital a doctor also listen to my heart rate and it was slow. At the time my protein was also Low though.

 For months during this sickness I would still exercise and run. I was able to do that right up until roughly the third week of July when the pain and the nausea was so bad even walking on a treadmill was ridiculous.

Whatever this is, seems to be traveling from my gut to my brain...and I mean a physical sensation in the brain, not just the anxiety of feeling like s$#&.  But a strange subtle pressure and dizziness. Dizziness is really not the right word. 

 I know it sounds crazy but I also have some pain in my tooth. I had a cavity filled a couple of months ago. But the pain persisted. I went back and the dentist reset It. He told me if it persisted that it was highly unlikely, but it could be a dead tooth.  It has been the least of my worries since the pain only occurs when I bite down anyway. But then when you're desperate for answers I couldn't help but think could this all be a freaking tooth?

 I Am My Own Worst Enemy.  I research things out of desperation and sometimes that comes out when I'm speaking with doctors so they think I'm crazy.  I am now trying to keep a cap on that.  but it was funny because as I was sitting waiting for the Celiac specialist my local GI doctor  Call to go over some test results and then kept saying maybe I was just hyper sensitive to having mild Celiac, referencing the same blood work that the Celiac specialist came in and disregarded.

 My sickness has been getting worse over the course of the last 11 months. That realization is the thing that makes me cry at night. I worry about my son growing up without a mom. 

 I am so f****** pissed off. It seems like you bounce from specialist to specialist and no one can find anything. I mean they find inflammation in the intestines I find inflammation in the thyroid I feel like there's inflammation in my eyes and in my brain now to. And the Gut hAs just gotten significantly worse since August.  And that is one of the things that really annoys me. It's like the doctors seem to go by The Endoscopy in August and they're like oh you just had Duodenitis. In January my scope Was completely normal.  I think they just assumed because there was some inflammation and nothing else going on in August that everything's fine now. But I swear to God if  they scoped me again now thEy would find more. Because it is so much worse. 

 it's a long story, but I somehow managed to speak with an endocrinologist I've never met and probably will never meet  on the phone. After telling him about my normal thyroid levels, my normal thyroid antibody, but the comments of my endo, the pain and ultrasound,  he told me it did not sound like Hashi's but possibly another disease process and referred me back to my primary care.

 I really truly am at the end of my rope. I live in Upstate New York. If anyone knows of any decent doctors who actually know how to put puzzle pieces together and listen to patieNts, I am open to any suggestions at this point.

 

I can understand where you are right now.  All the doctors are trying to make an educated guess on what you have while you suffering from whatever is going haywire in your system.  This is when I turned to holistic health and healing.  The majority of the holistic health I have been doing is Healing Touch.  I have found at least two (maybe more) certified healing touch practitioners in new York who are also RNs.  The combination I have found is priceless because during the sessions you get both the alternative medicine side and the medical professional piece as well.  My first Healing Touch practitioner was also an RN.

What city of New York do you live in? Doing some quick research right now.

[ironictruth]

2 hours ago, cstark said:

I can understand where you are right now.  All the doctors are trying to make an educated guess on what you have while you suffering from whatever is going haywire in your system.  This is when I turned to holistic health and healing.  The majority of the holistic health I have been doing is Healing Touch.  I have found at least two (maybe more) certified healing touch practitioners in new York who are also RNs.  The combination I have found is priceless because during the sessions you get both the alternative medicine side and the medical professional piece as well.  My first Healing Touch practitioner was also an RN.

What city of New York do you live in? Doing some quick research right now.

Near Syracuse. I did find one in Ithaca I was going to go to but ended up having to save the $ to drive out of state for the celiac specialist. I have to save up again.  since I am low on sick time I am afraid to use any money though in case I have to go off of payroll. But it might be worth the shot.

[cstark]

There is a healing Touch Practitioner who is also a nurse in Johnson City.  Her name is Mary pat Fitzgibbons.  Her website is: Open Original Shared Link. Her phone numbers are: (607) 217-7023 and (740) 607-4038 is her cell phone.  Not sure as charge per session, but it's worth a shot.  The ones I have been attending is relatively in range of $40-55 a session.  I know it sounds a lot when you are on a tight budget, but it is worth it.

Depending on where you work, you may be able to get on FMLA until you start to improve.  It not only secures your job when you get better, but it also gives you a little bit of flexibility as you go through whatever is attacking your body.  When I first started showing symptoms, my boss right away put me on FMLA.  It allowed me to keep working as much as I could but yet the flexibility to go to whatever doctor's appointments I had on my schedule.  I then had to have my primary sign a form stating I was able to go back to regular hours and workload. 

One other thing I learned through my Healing Touch sessions is how to read what my body is trying to tell me.  At times, it would drive my crazy, but I was eventually be able to figure it out.  Right now, get as much rest as possible; lots of fruits, veggies, and meat; and drink a lot of fluids.  Whatever is attacking your body needs to be flushed out of your body.  If the grease is getting low in an engine, it does not work as well.  The same thing with our bodies.  The extra fruits and veggies will help your body not to be depleted from any nutrients it is needing to function.

I do also suggest getting a another Celiac blood panel done to see if gluten is a factor in your symptoms.

Hang in there, and let me know how it goes.  {{{{{{{{HUGS}}}}}}}}

[ironictruth]

8 hours ago, Ennis_TX said:

After 7 doctors I got the diagnosis, with others mixed in . But going gluten free completely has helped a lot, along with finding out my allergies, and what foods I was intolerant to.  No more constant puking and gut pain, and best of all the I had major mind fog issues that were driving me insane where my own mind would turn against me and I could not do simple task I knew I should be able to are gone. Could not think about things, my mind would just loop like a broken record. And my hands would lose all coordination at random along with the feeling (Still do not have feeling back completely). I ended up seeming to have permanently lost my ability to process complex math problems and do computer programming. Anyway back to putting on weight now and and I know the cause of my other issues, just dealing with a few complications that have arisen now from not dealing with it sooner. And this community has been a big moral support, along with leading me to try applying some things I have read here about supplementation, and practices that have lead to a overall improvement.

And I have a new GI myself right now who just arranged for a bunch of blood test and scopes. SO going to need luck and prayers myself lol.

Ennis i will keep you in my thoughts. Keep me posted. 

[ironictruth]

8 hours ago, Ennis_TX said:

Thank you Cstark.  I will look her up. My DGP combined test in October it was positive but separated it was negative. I was told to disregard the DGP by Mass general. So I'm not really sure where that leaves me my TTG is always negative. My Celiac sibling who was biopsy proven was always sero negative.

 I do get FMLA, as I had to use it when I went off the payroll previously this summer. It's just I have no paid time left.

 I need to find some way to allow my body to heal. I did meet a doctor who told me that when our body experiences a lot of tests like Scopes And CT scans some people react with pain even though there's nothing wrong. It's like the brain's way of telling you that something is wrong with your body just because you had a scope down your throat at some point. scopes are nit meant to be down there. 

 I just find myself in a balancing act between one moment both physically and mentally feeling like there is something severely wrong and the next moment just trying to convince myself that this will all go away at some point.

Thank you for the hugs. 

[cstark]

How is it possible to separate the test and have it turn out to be negative?  Doesn't seem to make sense, but that's the medical profession for you at times.     GGGGRRRRRR!!!!!!!

Anyway, I would think that if something tested positive for gluten, you are at the very least gluten intolerant. if you have not already, something to consider is to go gluten free for a while to see if there is an improvement.  I am with you in the understanding that your budget is tight right now, and the thought of going through yet more testing is a drudgery.  Looking back in your first post, there are a number of factors that could be playing a part in your symptoms, physically, emotionally, and mentally.  Do not misunderstand me, I am not saying you are crazy.  You have a lot a stress in the past years and your body may not be coping well in any aspect. 

It's what happened to me last year October.  Talk about stress.  I have heard throughout these forums that stress can play a big part in a sudden increase of symptoms.  It's like to body is throwing in the towel after coping with so many years. 

Good luck, ironictruth.  I will be praying for you.  Keep me posted on how you are doing.

[GFinDC]

 I agree,  if you are a poor performer on the current celiac tests, then you may as well go gluten-free for 6 months and see if things improve.  Celiac testing isn't perfect, and some of us just don't get there with the current tests.  Going gluten-free is not going to hurt you, except as far as further testing goes, but staying on gluten could definitely hurt you if you are celiac and possibly even if you are NCGS IMHO.  Your body is a pretty darn good test mechanism, even better than the labs in some ways.  If your symptoms improve then you know gluten is not good for you.

[ironictruth]

 I am gluten free and have been for a while. However some other folks on the boards pointed out to me that because I was still going out to eat and cooking at my boyfriend's house up until July/August that I was not truly gluten free.

 DGP has an IGA and IGG component.  Inova Diagnostics makes a few different versions of the test one of them combines the IGA and IGG as a screen and one of them separates the IGA and IGG.  I literally had these tests done within a day or two of each other and then both again a couple of weeks later to see what happened. The combined test comes up as a moderate positive where as the separated test both came back negative. I thought it was the strangest thing so I called Inova to ask.  They obviously started asking me questions about my gluten-free diet and if I was feeling better and it could be something else and blah blah blah blah blah. I finally just asked if they had any studies comparing the tests that were separated with the test that was combined. She said studies were done but then would not tell me how to get them and told me to contact the hospital that did my blood work. Another user on this board gave me a link to the FDA decision summaries on these tests. I was able to actually find In one of the summaries  that A few tested positive to the combined test and negative to the separate test. In this specific summary those individuals were celiacs on a gluten-free diet and one of them was a first degree relative.

 But as I said Mass General pretty much told me to disregard the DGP test all together  and after everything I've been through I was too afraid to ask why at the moment.

 At the very least I get to learn some fascinating stuff while feeling like s***!

The stress in my past was a long time ago so I don't think it plays a role now. But I definitely think that the stress of being sick,  worrying about the symptoms, worrying about being a good mom, worrying about my job, it is a vicious cycle for me.  I am also sure that adding medications like Ppis, carafate, xanax etc, all stuff I was never on,  maybe introducing some side effects as well.

 I have to find a new endocrinologist now to see if the thyroid is possibly playing a role for real or not. 

 Thank you everyone for your support. I go back to my local GI this week. Poor guy. 

[cstark]

OK. So here's a few things to think about. 

#1 Even if the second test tested out negative, you still have a positive test for gluten issues the first time. Never mind that doctors told you to disregard it, it still tested out positive. Your body may have playing tricks on you the second time, I don't know.  How long have you been gluten free?  If it's been less than a year, you will still be feeling sick as your body is still weeding through the sludge and flushing out toxins.  As your body flushes out the toxins, you will still feel miserable in varying degrees.  I have been gluten free now for a year, and am just now starting to feel "normal".

#2 Correct me if I am wrong, but it seems as if you are looking for an incurable disease.  It could be that when you go to eat or eat at your BF's house, you could still be getting glutenized.  When you go to your BF's house, do you bring your pots and utensils, because if you don't you could risk being glutened.  A suggestion for this is to have him come over to your house, or have a set of utensils and pots set aside at his house for you.  Your body sounds like it is super sensitive right now.  Even a gluten molecule could set you off.  When you go out to eat, check beforehand if they offer a gluten free menu (most restaurants have websites).  When you get there, make sure you tell them it is due to an allergy and not a preference.  This makes a HUGE difference on preparation techniques.  I don't go to a lot of restaurants for this reason. 

I do pray that you start to feel better soon. Take care.

[ironictruth]

1 hour ago, cstark said:

OK. So here's a few things to think about. 

#1 Even if the second test tested out negative, you still have a positive test for gluten issues the first time. Never mind that doctors told you to disregard it, it still tested out positive. Your body may have playing tricks on you the second time, I don't know.  How long have you been gluten free?  If it's been less than a year, you will still be feeling sick as your body is still weeding through the sludge and flushing out toxins.  As your body flushes out the toxins, you will still feel miserable in varying degrees.  I have been gluten free now for a year, and am just now starting to feel "normal".

#2 Correct me if I am wrong, but it seems as if you are looking for an incurable disease.  It could be that when you go to eat or eat at your BF's house, you could still be getting glutenized.  When you go to your BF's house, do you bring your pots and utensils, because if you don't you could risk being glutened.  A suggestion for this is to have him come over to your house, or have a set of utensils and pots set aside at his house for you.  Your body sounds like it is super sensitive right now.  Even a gluten molecule could set you off.  When you go out to eat, check beforehand if they offer a gluten free menu (most restaurants have websites).  When you get there, make sure you tell them it is due to an allergy and not a preference.  This makes a HUGE difference on preparation techniques.  I don't go to a lot of restaurants for this reason. 

I do pray that you start to feel better soon. Take care.

Thank you. I just want an answer before I get so sick I can no longer function. We stopped eating out in late July and I no longer cook at his house. I will make something and bring it over. I had been eating snickers minis and mandms recently after Halloween. Maybe that was it. 

I feel so sick today. Like there is a bacteria in my gut that is infecting my brain. I can fake it pretty well up to a point at work, which I need to do because I think people are tired of hearing about it with no diagnosis to point to. 

[knitty kitty]

Ironictruth, 

I feel for you. Like you, I went through a bunch of testing without definitive results and was given an array of drugs to treat the symptoms.  After struggling for years, a bright doctor came to the conclusion I was allergic to Sulfa drugs.  

The PPI's, the antidepressants, dental anesthesia, these and other drugs, all contain Sulfa components that I react to in addition to being Celiac.  

I had the meltdown into tears, the inability to do math and computer stuff,  the strange buzzing vibrations, the strange brain feelings, the irregular heartbeat, tachycardia.  The doctors I saw thought I was crazy or a hypochondriac.  

Finally, I found a doctor who reviewed my records and realized the Sulfa drugs were making me ill.  I've been doing much better since.

Check with your doctor.  Perhaps this is the solution for you, too.

 

 

 

 

[cstark]

Don't give up.  Prayers and hugs.

[ironictruth]

1 hour ago, knitty kitty said:

Ironictruth, 

I feel for you. Like you, I went through a bunch of testing without definitive results and was given an array of drugs to treat the symptoms.  After struggling for years, a bright doctor came to the conclusion I was allergic to Sulfa drugs.  

The PPI's, the antidepressants, dental anesthesia, these and other drugs, all contain Sulfa components that I react to in addition to being Celiac.  

I had the meltdown into tears, the inability to do math and computer stuff,  the strange buzzing vibrations, the strange brain feelings, the irregular heartbeat, tachycardia.  The doctors I saw thought I was crazy or a hypochondriac.  

Finally, I found a doctor who reviewed my records and realized the Sulfa drugs were making me ill.  I've been doing much better since.

Check with your doctor.  Perhaps this is the solution for you, too.

 

 

 

 

I will! I kept wondering if something I have been taking is making it worse. 

[Dee1234]

On 11/22/2016 at 11:10 AM, ironictruth said:

Thank you. I just want an answer before I get so sick I can no longer function. We stopped eating out in late July and I no longer cook at his house. I will make something and bring it over. I had been eating snickers minis and mandms recently after Halloween. Maybe that was it. 

I feel so sick today. Like there is a bacteria in my gut that is infecting my brain. I can fake it pretty well up to a point at work, which I need to do because I think people are tired of hearing about it with no diagnosis to point to. 

^ most candy has gluten added to it. I had to give up all candy too. ?

[ironictruth]

 At this point I get some strange neurological symptoms within minutes or so of eating anything. Face gets numb, brain feels like it has pressure in it, sinus area stinging, muscle twitches, eye pain, heart races, Had trouble swallowing for a minute. 

It is like there is a nerve path directly from my stomach to my brain. 

And the pain. Right smack where the pancreas would be, but that all checked out. It is a horrible pain, there 80% of the day now. 

I am afraid to eat! Is this freaking normal?!

 

[Dee1234]

I can't say if it's normal or not. 

 

All i know is that i hardcore cut out every single thing that could possibly contain even at tiny amount of gluten...And i got better.

 

 

Honestly i wouldn't mess around with it. My dr friend that i ended up speaking to months later. (friend....he lives far away and is not my dr) said that gluten ataxia can cause permanent damage and that i was lucky i thought of it first. Then he yelled at me for not calling him for medical advice. Lol

 

But seriously, he said it sounds like i have it and not to take any chances. It can build up and get progressively worse. 

 

I had those same symptoms and a few more i forgot to mention like a rash on my legs for the past....30 yrs that no dermatologist could determine, btw, and superficial...like surface of the skin pain. Sort of on my wrists, back, hips, stomach. It felt like if you were a kid and skinned your knee. Sometimes if my bf would touch that spot ...or no one touching me. And it got worse. 

 

 

All that stuff went away after stopping gluten.

So...my point is...research it and stay away from anything on the list that might have gluten. Like cold cuts, ice cream, medications have gluten in the coating sometimes, but the pharmacy usually has gluten-free, vitamins too, sour vream, certain red meats, turkey, chicken on the rotisserie, ham, any sausage, candy, red wine and basically all alchohol except vodka, gin, and a few brands of white wine (arbor mist is gluten free), any bbq sauce, ketchup, most sauces,bacon... I can't think of anything else.

And the obvious wheat products in general. 

So.....at least try it. What's it going to hurt? 

 

 Good Luck.

[Gemini]

8 minutes ago, Dee1234 said:

I can't say if it's normal or not. 

 

All i know is that i hardcore cut out every single thing that could possibly contain even at tiny amount of gluten...And i got better.

 

 

Honestly i wouldn't mess around with it. My dr friend that i ended up speaking to months later. (friend....he lives far away and is not my dr) said that gluten ataxia can cause permanent damage and that i was lucky i thought of it first. Then he yelled at me for not calling him for medical advice. Lol

 

But seriously, he said it sounds like i have it and not to take any chances. It can build up and get progressively worse. 

 

I had those same symptoms and a few more i forgot to mention like a rash on my legs for the past....30 yrs that no dermatologist could determine, btw, and superficial...like surface of the skin pain. Sort of on my wrists, back, hips, stomach. It felt like if you were a kid and skinned your knee. Sometimes if my bf would touch that spot ...or no one touching me. And it got worse. 

 

 

All that stuff went away after stopping gluten.

So...my point is...research it and stay away from anything on the list that might have gluten. Like cold cuts, ice cream, medications have gluten in the coating sometimes, but the pharmacy usually has gluten-free, vitamins too, sour vream, certain red meats, turkey, chicken on the rotisserie, ham, any sausage, candy, red wine and basically all alchohol except vodka, gin, and a few brands of white wine (arbor mist is gluten free), any bbq sauce, ketchup, most sauces,bacon... I can't think of anything else.

And the obvious wheat products in general. 

So.....at least try it. What's it going to hurt? 

 

 Good Luck.

Almost everything you listed as containing gluten does not.  Some definitely have gluten free counterparts that can easily be found in most grocery stores but things like bacon, red wine, ham and a few others are naturally gluten free so a I am not sure where you came up with this list.  Many of what you listed are not the healthiest choices out there and may cause stomach distress in some people but it most likely would not be from gluten.  As always, read the label!

[Dee1234]

1 minute ago, Gemini said:

Almost everything you listed as containing gluten does not.  Some definitely have gluten free counterparts that can easily be found in most grocery stores but things like bacon, red wine, ham and a few others are naturally gluten free so a I am not sure where you came up with this list.  Many of what you listed are not the healthiest choices out there and may cause stomach distress in some people but it most likely would not be from gluten.  As always, read the label!

Yea most of those are naturally gluten-free,  but a lot of processed foods....like ham can have gluten added. It says right on the label.

 

I'm lucky enough to live near an ALDIS grocery store .they have certified gluten-free products and it's not as expensive as reg grocery gluten-free stuff! ( thank goodness!) 

 

 

[Dee1234]

This list is pretty good for a reference. Personally...i can totally tolerate maltodextrin made from corn, but not from wheat. 

 

 

 

Open Original Shared Link

[emma6]

i wouldn't trust everything on that list, they don't even consider rice to be gluten free. the whole website seems like its trying to scare people into buying their books, memberships, tests etc

[kareng]

8 hours ago, Dee1234 said:

This list is pretty good for a reference. Personally...i can totally tolerate maltodextrin made from corn, but not from wheat. 

 

 

 

Open Original Shared Link

That list doesn't agree with the legitimate Celiac Associations lists.