symptoms after eating and 2nd biopsy?

[ironictruth]

I am new to this. Biopsy negative after 6 week gluten challenge, mildly elevated DGP IGA, DQ2 gene, sibling with biopsy positive celiac. I told the GI doc stuff did not start to get really weird until 10 days before the biopsy. It got much much worse the 2 months after.

Anyway, I had a whole bunch of wacky stuff happen toward the end of my gluten challenge. Some of it is gone, other things are not. Sort of wondering if we missed something on biopsy as every other test run has been negative and this seems to be correlated with the challenge.

I have tried to be gluten-free for about the last 6 weeks but I guess I am an idiot. I had some barley malt in juice last week and who freakin' knew Pringles had wheat in them? I am getting to the point of realizing that I need to go very plain and simple for a month or so to see if I start to feel better. No packaged crap. I found myself staring at some frozen salt and pepper brussel sprouts my boyfriend has in his freezer trying to figure out if they are safe. They do not say "contains wheat" but they have stuff like "food starch" and "yeast".

I am rambling.

My point:

I have noticed that I will feel good sometimes during the day and horrible during others. It LITERALLY comes and goes in waves. I could get up in the am and run 4 miles on the treadmill then by  noon it might hit. It starts with a pressure like feeling in my upper stomach that     radiates a strange pain to my chest  which also causes pain in between my shoulder blades, then up into my right neck and oddly my ear. I also feel short of breath, like I cannot take a deep breath on and off throughout the day and my eyes feel funny.

Yes, we have been to the cardiologist (: Yes we have explored GERD and silent reflux.

I am starting to wonder if this feeling I get is related to eating and digestion. My lower stomach does not hurt though. I can hear it, but it does not hurt. Just that squeeze/strange sensation in my upper belly (gallbladder out in 1997).  The meal does not have to have gluten per se, (though the freaking Pringles incident was yesterday) but any kind of food. I just ate a nice salad with beets, avocado and ham and an hour later I start to feel funny. Just bam! The wave of weirdness which would send me into a panic a month ago but since I have not keeled over yet I sort of get through it. now. These weird feelings will go away probably and then come back again later in the day.

Does anyone have any experience with eating anything, even a gluten-free meal, and getting weird stuff shortly after going gluten-free?

My other question is, and I guess I feel really dumb asking this, but has anyone had a second diagnostic biopsy? Looking back I wish I had done a 12 week challenge before the biopsy to make sure. Also, my doctor forgot to run the bloodwork (the mildy elevated DGP was from my primary care last year) and was unaware of the DGP test.  I guess at this point it would be stupid for me to undergo a second challenge.

 

 

[plumbago]

  On 4/18/2016 at 4:44 PM, ironictruth said:

I could get up in the am and run 4 miles on the treadmill then by  noon it might hit. It starts with a pressure like feeling in my upper stomach that     radiates a strange pain to my chest  which also causes pain in between my shoulder blades, then up into my right neck and oddly my ear

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Is the pain bad? If you get in the fetal position, is your pain relieved? Is the pain worse after eating or drinking alcohol? Have you gotten a complete blood test? If so, what are the results? What is your blood glucose? What is your triglyceride level?

[ironictruth]

  On 11/4/2016 at 10:51 AM, plumbago said:

Is the pain bad? If you get in the fetal position, is your pain relieved? Is the pain worse after eating or drinking alcohol? Have you gotten a complete blood test? If so, what are the results? What is your blood glucose? What is your triglyceride level?

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It is bad because it is chronic through ouht the day. But I can function. Makes me queasy too. I had an infected bile duct in 1997 and those attacks were very bad. I now have pain right where the pancreas is but ultrasound was normal and enzymes are normal. I also feel a lot of pressure/pain on my right side by the ribs and pain in my back. My blood sugar is fine and cholesterol fine. Sometimes eating helps for the first 30 minutes, other times I feel more sick after eating. 

I am also short of breath with skipped heart beats. I get a rash on and off. 

Have not tried fetal position. 

My latest CBC was normal except mildly elevated basophils and myleocytes. Liver enzymes are also normal. 

I just found out that my combined DGP assay which was moderate positive (combines IGA and IGG) is negative when you separate the tests. I have no idea why. So now I have no idea yet AGAIN, if this is gluten related. 

[GFinDC]

Hi Ironic,

Have you been tested for ulcers?  They can cause chronic yet varying pain.   Might be worth checking on.

[ironictruth]

  On 11/4/2016 at 9:43 PM, GFinDC said:

Hi Ironic,

Have you been tested for ulcers?  They can cause chronic yet varying pain.   Might be worth checking on.

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They did an endoscopy recently. Is there another test?

[plumbago]

Ok, so the cholesterol is fine but what about the triglycerides? You say you have had a bile duct problem in the past...where I'm going with this is pancreatitis (chronic). Have you already ruled it out? Biliary tract disease  is a risk factor for pancreatitis. As far as I understand, the pain of acute pancreatitis is excruciating and any provider would have been able to identify it right away, I would think. You say you have had an ultrasound. As far as I know, among the diagnostics for pancreatitis are the following:

•    CT test
•    A lot of blood tests
•    Liver enzymes
•    WBC count increased
•    Serum calcium may be decreased because calcium combines with fatty acids during fat necrosis.
•    Enzymes increase (amylase, lipase)
•    Triglycerides increase
•    Blood glucose increases

That's my two cents. I wish you continued peace to continue persistence.

 

Open Original Shared Link

 

And Medscape:

Open Original Shared Link

[plumbago]

  On 11/4/2016 at 10:27 PM, ironictruth said:

They did an endoscopy recently. Is there another test?

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Colonoscopy + others...(small bowel series, and others)

[Posterboy]

Ironictruth,

I don't know if this will help you are not.

but when doing other research I came across this article on nytimes.

Open Original Shared Link

Quoting from the opening of the article (read it all for yourself)

"On Thursday we Open Original Shared Link a 43-year-old woman had such terrible abdominal pain that she lost more than 10 percent of her original body weight over the course of just a few weeks. There were two important clues in her case. First, her pain came on after she ate. And second, the pain improved when she brought her knees up toward her chest. More than 250 of you responded, but only five of you got it right.

The correct diagnosis is:

Median arcuate ligament syndrome, or MALS — also known as Dunbar syndrome or celiac artery compression syndrome."

If it is MALA it is easy enough to try just like someone suggested in their response if the fetal position improves the pain then it could be this diagnosis.

It is worth noting as the nytimes notes in their summary "Most of the time it is a doctor and not a friend who makes the diagnosis in this column." but  in this lady's case it was the "call of/from a friend" as they say that helped clue her into the correct diagnosis.

Consider this reply a "call from a friend" if it helps.  If it doesn't it simple of enough to try.

Good luck on finding out what is causing your pain.

Posterboy,

[plumbago]

The Washington Post also did a medical mystery story on MALS:
Open Original Shared Link

Both women are petite.

Also consider a sliding hiatal hernia, which is diagnosed by endoscopy usually.

[ironictruth]

  On 11/5/2016 at 12:42 AM, plumbago said:

Ok, so the cholesterol is fine but what about the triglycerides? You say you have had a bile duct problem in the past...where I'm going with this is pancreatitis (chronic). Have you already ruled it out? Biliary tract disease  is a risk factor for pancreatitis. As far as I understand, the pain of acute pancreatitis is excruciating and any provider would have been able to identify it right away, I would think. You say you have had an ultrasound. As far as I know, among the diagnostics for pancreatitis are the following:

•    CT test
•    A lot of blood tests
•    Liver enzymes
•    WBC count increased
•    Serum calcium may be decreased because calcium combines with fatty acids during fat necrosis.
•    Enzymes increase (amylase, lipase)
•    Triglycerides increase
•    Blood glucose increases

That's my two cents. I wish you continued peace to continue persistence.

 

Open Original Shared Link

 

And Medscape:

Open Original Shared Link

Expand Quote  

Yes, I was thinking pancreatitis too as I had several bouts of terrible burning mid gut into the back which had me pacing at 2am. So far, the blood work you mentioned has been normal. TRI's in Feb were 60.  and they even did an EUS. I actually felt the doctor jab something during the procedure. I raised my arm when he did it  and the pain was bad and worsened after. Both the bile duct and common hepatic duct are enlarged.  I guess that can be a normal finding after having a gallbladder removed though.They did a CT scan. We have an MRI next week   and the doc said he's going to be looking at the Ducks and more subtle pancreatic damage. So you may be right.as well as another CT to look for nueroendocrine tumor.  during all of this I also got a lot of really weird fluctuations in blood pressure and sugar.

 I am just so sick of being sick. And I feel like I have wasted months and months trying to figure out what is wrong and now they threw a monkey wrench in this with my more recent Celiac testing.

 I wish I could go back a year and just feel better again.

 

[ironictruth]

  On 11/5/2016 at 8:05 AM, Posterboy said:

Ironictruth,

I don't know if this will help you are not.

but when doing other research I came across this article on nytimes.

Open Original Shared Link

Quoting from the opening of the article (read it all for yourself)

"On Thursday we Open Original Shared Link a 43-year-old woman had such terrible abdominal pain that she lost more than 10 percent of her original body weight over the course of just a few weeks. There were two important clues in her case. First, her pain came on after she ate. And second, the pain improved when she brought her knees up toward her chest. More than 250 of you responded, but only five of you got it right.

The correct diagnosis is:

Median arcuate ligament syndrome, or MALS — also known as Dunbar syndrome or celiac artery compression syndrome."

If it is MALA it is easy enough to try just like someone suggested in their response if the fetal position improves the pain then it could be this diagnosis.

It is worth noting as the nytimes notes in their summary "Most of the time it is a doctor and not a friend who makes the diagnosis in this column." but  in this lady's case it was the "call of/from a friend" as they say that helped clue her into the correct diagnosis.

Consider this reply a "call from a friend" if it helps.  If it doesn't it simple of enough to try.

Good luck on finding out what is causing your pain.

Posterboy,

Expand Quote  

My  brother actually told me about that story recently! It's funny because when I first started getting the pain before it became crime I had Googled something about Celiac artery as well. And I think the Celiac artery is what they block when you have pancreatitis as well. I have not tried to do the fetal position but I will certainly give it a try. at this point I would do the chicken dance  every hour on the hour for the rest of my life if I could just feel better.