round 2 rant and rib pain?

[ironictruth]

After doing a gluten challenge roughly a year ago I have had a lot of weird symptoms.  my biopsy last year six weeks on gluten was normal my blood work was weak positive. I have been gluten-free ever since March of last year except for still going out to eat and had some heightened blood work in August as well as inflammation but no Villi blunting.  the positive blood work in August conflicts with the same test run by a different lab which was negative.

 after months of dealing with strange neck pain I finally convinced my primary to do with thyroid ultrasound and she ran 1 antibody test for Hashimoto's disease which came back negative.  I went and got myself an endocrinologist over the summer and he told me that I have Hashimoto's despite the fact that the bloodwork was normal.  a more recent thyroid ultrasound revEaled that my isthmus is considerably larger in the right sight. I have a small nodule on my thyroid as well as an enlarged lymph node.  this was ordered by my GI doctor so I'm not sure he really knows what to do with it. I will be meeting with a new endocrinologist hopefully in the next couple of months. In the meantime out of desperation since I have been to the ER multiple times and multiple second opinions by doctors in the last year, I finally paid a $40 fee to talk to a doctor online.  I figured I already pay half of that and a copay to the regular doctors. What he did tell me was not to worry too much about the enlarged lymph node and to keep track of the knowledgeable, but he also told me that actually one of the antibodies to the thyroid had not been run for me at all.  so maybe it was worth 40 bucks.

 I have had so many weird bizarre testS run since August. I finally said to my 2nd GI doctor that maybe we should stop looking for a zebra maybe we just missed the horse the first time around. I asked him if We coUld do the blood work again and he was unwilling to do this. He does not offer sibo testing but wanted me to have it done so I was doing that with my first GI doctor so I called him and he was willing to run the blood work for gluten.  I don't really understand why the  2nd GI doctor was not willing to do it. He tried to engage me in some kind of thought experiment saying that what happened if I ate gluten and I feel better? That to me did not make any sense either I'm going to feel worse Or feel the same in which case we're still barking up the wrong tree.  I figure it's my life and I need to know what's wrong with me and why restricted diet if I don't have to. I also think that I started taking Xanax back in March to deal with some of the medical issues and because people kept saying it was all in my head, and now I think I have little withdrawals in between Doses and didn't even realize that was happening. So I'm cutting back on that.

 I have been on gluten again for about a week. And I am enjoying all of the things that I did not use to get. I do get D in the mornings again as I used to before. although I'm also eating a much richer diet since I'm getting to eat all the things I wasn't able to leave for a while so it could just be caused by that.  I also for quite some time now I have been dealing with a lot of pressure under my right rib cage This started out probably sometime in September. I do not have a gallbladder and although I used to do my fair share of drinking red wine all of the testS for my liver have been fine so far. I am getting a stabbing pain in the right side of the ribs. 

Anyone get this? 

[cyclinglady]

My rant.

I assume you are going to stay on gluten for 12 weeks and eat as much as you can in order to get a positive celiac blood panel?  Is that the goal?  As you know,  symptoms do not always correlate with this disease.  Symptoms change.  celiac disease has been described as a chameleon because of this inconsistency in symptoms.  Otherwise, I think you are just doing this to harm yourself.  If I had weird heart issues and all your other health issues, I personally would avoid gluten and not continue to test it on my own with the possibilty of causing more damage outside of my gut.  Many of us have advised you to give the gluten-free diet a year!  

How  in the heck do you keep going to doctors who run tests without you reviewing the lab order?  If you suspected thyroid, you should have researched and been aware if the necessary tests.  I know you are not a doctor, but for all the research you do, locating the thyroid antibodies test seems easy to do.  Or am i missing something?  

WTF.  You are drinking yet you ask your doctors to check for liver damage.  Can you not abstain until your health improves?  I do not have a gallbladder, but rich foods do not impact my digestion.  Could be different for you, I know.  Aspirin is good for heart health (well documented), but i am severely allergic to it.  Does that mean I should consume it because it is one of the many tools in preventing heart disease?  

What about SIBO?  You never said if any doctor agreed to test you.  

You consulted with one of the BEST celiac centers in the US.  They did not think you had celiac disease.  So did they recommend a gluten-free diet (because once celiac disease is ruled out, they can consider NCGI as a possibility)?  

that weird pain under your right rib cage?  Could be a ducting issue.  My Aunt had issues with that after her gallbladder removal.  She required a stent to keep it open.  But do not listen to me, only a GI can diagnose that!  

Finally, do the gluten challenge but consider it only if you consult with the doctor who diagnosed your brother with celiac disease.  Maybe he can diagnose you too.  Why bother with a challenge -- especially with your current GIs who are incompetent (per your description).  With your luck it will go sour.   

My hubby has been gluten-free for 15 years without a diagnosis.  He loves food.  But he sticks to it.  Sheer will power? Maybe, but that is what tons of NCGI folks do.  They eat gluten free despite not having a lab test to prove the need. 

Sorry to be mean, but there it is.  

[ironictruth]

2 hours ago, cyclinglady said:

My rant.

I assume you are going to stay on gluten for 12 weeks and eat as much as you can in order to get a positive celiac blood panel?  Is that the goal?  As you know,  symptoms do not always correlate with this disease.  Symptoms change.  celiac disease has been described as a chameleon because of this inconsistency in symptoms.  Otherwise, I think you are just doing this to harm yourself.  If I had weird heart issues and all your other health issues, I personally would avoid gluten and not continue to test it on my own with the possibilty of causing more damage outside of my gut.  Many of us have advised you to give the gluten-free diet a year!  

How  in the heck do you keep going to doctors who run tests without you reviewing the lab order?  If you suspected thyroid, you should have researched and been aware if the necessary tests.  I know you are not a doctor, but for all the research you do, locating the thyroid antibodies test seems easy to do.  Or am i missing something?  

WTF.  You are drinking yet you ask your doctors to check for liver damage.  Can you not abstain until your health improves?  I do not have a gallbladder, but rich foods do not impact my digestion.  Could be different for you, I know.  Aspirin is good for heart health (well documented), but i am severely allergic to it.  Does that mean I should consume it because it is one of the many tools in preventing heart disease?  

What about SIBO?  You never said if any doctor agreed to test you.  

You consulted with one of the BEST celiac centers in the US.  They did not think you had celiac disease.  So did they recommend a gluten-free diet (because once celiac disease is ruled out, they can consider NCGI as a possibility)?  

that weird pain under your right rib cage?  Could be a ducting issue.  My Aunt had issues with that after her gallbladder removal.  She required a stent to keep it open.  But do not listen to me, only a GI can diagnose that!  

Finally, do the gluten challenge but consider it only if you consult with the doctor who diagnosed your brother with celiac disease.  Maybe he can diagnose you too.  Why bother with a challenge -- especially with your current GIs who are incompetent (per your description).  With your luck it will go sour.   

My hubby has been gluten-free for 15 years without a diagnosis.  He loves food.  But he sticks to it.  Sheer will power? Maybe, but that is what tons of NCGI folks do.  They eat gluten free despite not having a lab test to prove the need. 

Sorry to be mean, but there it is.  

The celiac center actually had told me that they would probably end up suggesting a longer gluten challenge as the first one was six weeks. I spent time/money going there and am unsure yet if I will go there for follow up or stay local. I am supposed to do a virtual visit with them after SIBO testing is done locally on the 5th. 

My large red wine days are behind me, except the occasional mishap. I had only asked since the pain was on the right side and you start guessing at things when looking for answers. 

I had no idea what antibody tests were for Hashimoto's just as I initially had no idea what antibodies were run for celiac. I just knew the one that my primary ran was within range and an endocrinologist read it differently and said Hashi's. Yet another endo said it did not sound like Hashi's. So I am at a loss for how I should know this when 3 doctors cannot get it straight. 

I never said the GI's were incompetent. One forgot to run the bloodwork while I was on gluten and was unaware of the existence of DGP, so yes, that was unsettling. When I sent his office the info on the test, they called to thank me. The 2nd GI ran a bunch of tests for GERD, and to look at pancreatic and hepatic ducts because I once had an infection in a bile duct. He is also actually the one who ordered a follow up thyroid ultrasound. He did not want to run more celiac bloodwork. The original GI was willing. Since I am a single mom I was not sure I wanted to spend more time/money going out of state. But I have yet to decide. 

I have been gluten free since last March and far more strict since September. Nothing has gotten better, in fact from July on, it just got worse. 

I lay awake at night, with all if this weird stuff, wondering what is causing it and it has created a lot of anxiety for me. For my peace of mind, I finally decided it was worth seeing what happens reintroducing gluten. Because if it is NOT gluten related (I get no worse) then I am wasting a lot of time and energy barking up the wrong tree. 

If I was feeling better on the diet, I would certainly say there is no point in pursuing it further. But I knew after driving out of state, that was going to end up being the choice I was given. 

[Awol cast iron stomach]

I can very much empathize. I have spent 2016 going through this myself. 

I did not get the celiac diagnosis nor a definitive ncgi. I was to finish a 2 week gluten challenge, I had to stop day 6, took 2 days off to settle things down, then ate a small amount  one more day. I finished 7 of 14 they are lucky they got me to do that. I won't rant how much I regret doing this unfruitful endeavor nor how much it cost us. I gave it the college try ,but I really have no desire to go to another Dr.  At this point I just want to get better. This unfortunate series of events made me worse.

My husband and kids by day 6 knew how bad I was. I have to accept they aren't giving either  diagnosis to me. I however don't have ibs as I was told for 20 years. So I found out one piece of info. One gi staff member shared I have Barrett' s and was quite dismal to my husband  that her prior cases did not end well -esophageal cancer. Luckily the pathologist saw no dysplasia vs her inital report based on what she saw of my scope. I have no Gerd symptoms. I focus on the other boards I read on celiac .com that  are much more optimistic about Barrett' s being very low statistically progressing to esophageal cancer. That's all I have.

So I am back to going with gluten is bad, self diagnosis, Again! don't eat it!, with my children and husband concurring my self diagnosis (again!)  I went full circle for zip, nada. On my own again except for you all,  but based on the gloom and doom I always have cancer to "look forward to" complete sarcasm of course. Bedside manner is hard to find in my experience.

I know the posters are not Drs but this site has helped me tremendously it astounds me that there are no other current methods for testing. In addition to gluten issues, several 2016 intolerances, I ultimately have found I'm intolerant of Dr.s 

It sounds as if you have the stamina to go the distance if so do as the other posters suggest take those results and get a second opinion. I would do that but I have lost all desire to play patient anymore. Also I've allocated plenty of time money and health on this fiasco. Patient -That adjective no longer describes me. I just have to look up to my role model  cycling lady's husband as I'm at wits end. 

Good luck ironic truth. 

[ironictruth]

1 hour ago, Awol cast iron stomach said:

I can very much empathize. I have spent 2016 going through this myself. 

I did not get the celiac diagnosis nor a definitive ncgi. I was to finish a 2 week gluten challenge, I had to stop day 6, took 2 days off to settle things down, then ate a small amount  one more day. I finished 7 of 14 they are lucky they got me to do that. I won't rant how much I regret doing this unfruitful endeavor nor how much it cost us. I gave it the college try ,but I really have no desire to go to another Dr.  At this point I just want to get better. This unfortunate series of events made me worse.

My husband and kids by day 6 knew how bad I was. I have to accept they aren't giving either  diagnosis to me. I however don't have ibs as I was told for 20 years. So I found out one piece of info. One gi staff member shared I have Barrett' s and was quite dismal to my husband  that her prior cases did not end well -esophageal cancer. Luckily the pathologist saw no dysplasia vs her inital report based on what she saw of my scope. I have no Gerd symptoms. I focus on the other boards I read on celiac .com that  are much more optimistic about Barrett' s being very low statistically progressing to esophageal cancer. That's all I have.

So I am back to going with gluten is bad, self diagnosis, Again! don't eat it!, with my children and husband concurring my self diagnosis (again!)  I went full circle for zip, nada. On my own again except for you all,  but based on the gloom and doom I always have cancer to "look forward to" complete sarcasm of course. Bedside manner is hard to find in my experience.

I know the posters are not Drs but this site has helped me tremendously it astounds me that there are no other current methods for testing. In addition to gluten issues, several 2016 intolerances, I ultimately have found I'm intolerant of Dr.s 

It sounds as if you have the stamina to go the distance if so do as the other posters suggest take those results and get a second opinion. I would do that but I have lost all desire to play patient anymore. Also I've allocated plenty of time money and health on this fiasco. Patient -That adjective no longer describes me. I just have to look up to my role model  cycling lady's husband as I'm at wits end. 

Good luck ironic truth. 

Thank you so much. Yes, I am on day 8 and am not noticing any increased sickness outside,of what I already had and maybe some morning D. So it certainly has me questioning. If I was as sick as you, I would not continue. Around the same time I became sick my neck began hurting, prompting a thyroid ultrasound months later. So who knows...

My boyfriend has barrett's. I am sorry to hear you have it. 

I am seeing a naturopath next month too as I have exolored every traditional medical road to date. 

[GFinDC]

Ok, so the gluten challenge is 12 weeks for the blood testing and 2 weeks for the endoscopy.  I don't know if you have problems digesting dairy now, but if you start having dairy symptoms during the challenge that could be a celiac symptom.  You could also have your nutrient levels checked now and at the end of the challenge.   Just to see if there is any change due to malabsorbtion.

[ironictruth]

1 hour ago, GFinDC said:

Ok, so the gluten challenge is 12 weeks for the blood testing and 2 weeks for the endoscopy.  I don't know if you have problems digesting dairy now, but if you start having dairy symptoms during the challenge that could be a celiac symptom.  You could also have your nutrient levels checked now and at the end of the challenge.   Just to see if there is any change due to malabsorbtion.

That is a good idea. I think we are doing the bloodwork early on and if no change, again later on. 

I also have to get the thyroid tackled to figure out exactly what is up there as everything started around the same time. 

We are further slowly removing xanax that I started taking when all this happened as it too can cause a lot of issues during withdrawl. I was on the lowest dose possible and had no idea that it could cause so many issues until my eye doc informed me it was the likely culprit of my dry eye and sudden pain I began getting. 

It is amazing, I can google my symptoms for thyroid, gluten or benzo withdrawl and if you hop on the boards for each they all seem to point to each one. I mean, head pressure, nausea, palpitations, abdominal pain, they literally are all listed as a potential symptom. 

I am looking forward to getting my life back.