frustrated

[ironictruth]

I know it takes time to heal. My DGP IGA was only 32 (On a gluten-free diet) recently after a bout of D and a diagnosis of marked focal duodenitis. 

But it has been 6 weeks since my scope (gluten-free diet) and the pain/nausea is almost worse then it was. The "OMG I cannot function and hardly can walk across a parking garage" feeling is mostly gone, but I still get a lot of skipped heartbeats, shortness of breath, etc. My iron and b12 are fine.

I guess I am trying to figure out if others have similar pain. Mine is in my upper tummy. It is about 80% of the day that I can feel it. It often makes my right ribcage feel squished. Both the upper stomach and my back are really tender to touch. Like I am internally bruised. It has been going on for several months but worse in the last 6 weeks. For a while there I aslo had stabbing pains in the right side. I know now not to eat certain things, like apples.

My GI is ordering a MRI to rule out pancreatic or duct issues. I had been calling his office for 2 weeks to ask if the pain should be getting worse and did not get a return call until today (after his nurse told me to ask for a supervisor). I already had an internal ultrasound (EUS) and CT scan and everything looked normal except for a bit of a wide bile duct, but I had gallstones in 1997 and one got into my duct and it became infected. The doc who did the procedure said it would be normal for it to be slightly wide as a result. Of course, he also told me my duodenum "looked fine" when I asked if my symptoms could be due to intestinal stuff  and lectured me about how much money the gluten free industry makes, like I ENJOY giving up chocolate covered white cream donuts (this was a month before they found the inflammation in my intestine via scope). 

I am just so, ugh. Sick of feeling like s$#& and miss being able to exercise. Doctors look at you like, "nothing is wrong, go to the gym", but I have pain everywhere (just worse in my tummy) nausea, hard to take a deep breath, heart skips, neck and ears are hurting (endocrinologist says from thyroid inflammation). It takes everything mentally and physically in me just to get through the day. If any of these doctors ever had to go through what it FEELS like, not what the labs say, to get glutened (numbness, heart, brain, gut) then maybe they would have some more understanding.

To make matters worse, I asked the GI, since he was already ordering labs, if we could do the DGP again since it has been a month or so. I figured, if it is still rising, maybe that is why the continued pain. I have looked at my meds and foods, shampoo, toothpaste.  If it is negative, then it is something else. He pretty much ridiculed me on the phone, said celiac does not present this way (started talking about it only presenting with constant "runs") and it was a waste of my medical dollar to get the test again. He supposedly ordered it (we will see) and a bunch of other labwork.

I am SO frustrated because this is my 2nd GI doc and I was hoping this would be a good one.  But he just said it was possibly celiac but the scope did not show villi blunting. When I asked what else the DGP could be positive for he said nothing that he was aware of then 3 minutes later told me to get tested for SIBO because maybe it is NOT celiac, then tossed me 3 months worth of protonix, which of course, I have to be OFF of for SIBO testing. I cannot tell if the PPI is making things worse or better. Seriously.

I did buy some digestive enzymes finally and a new tea! And I made more bone broth stew last night. Who hoo! Yay me!

[GFinDC]

Hi Ironic,

You said your thyroid is swollen?  Why is that?  Do you have Hashimoto's Thyroiditis?  Hashimoto's is an immune system attack on the thyroid.  The doctor can do a blood test to see if there are thyroid antibodies in your blood.  People with Hashimito's sometimes swing between hyper and hypo thyroid symptoms.  Being hyperthyroid can cause a lot of symptoms by itself.  I suggest you look into your thyroid condition as the thyroid can affect your body in very serious ways, including the heart palpitations (hyper-thyroid).

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Hyperthyroidism (overactive thyroid) is a condition in which your thyroid gland produces too much of the hormone thyroxine. Hyperthyroidism can accelerate your body's metabolism significantly, causing sudden weight loss, a rapid or irregular heartbeat, sweating, and nervousness or irritability.

Several treatment options are available if you have hyperthyroidism. Doctors use anti-thyroid medications and radioactive iodine to slow the production of thyroid hormones. Sometimes, treatment of hyperthyroidism involves surgery to remove all or part of your thyroid gland. Although hyperthyroidism can be serious if you ignore it, most people respond well once hyperthyroidism is diagnosed and treated.

 

[ironictruth]

I had an ultrasound in July which pointed to Hashimoto's but the antibody test was negative and the TSH levels are normal. I have since learned that only one antibody test was done and there are more. My doc at the time was just going to drop it but something did not feel right. 

I found myself an endo and he is going to repeat the thyroid ultrasound soon. My neck/Ear has pain and is tender To touch on the right side. This started with a gluten challenge last year.

Oddly, I went out and bought a bp monitor when I staryed getting sick. I will go from bp 90/50 one week and bradycardia to bp 130/90 and hr 90. Nothing shocking to the docs, but a big change to me. 

I had done some research and it may be subacute thyroiditis, which can last for months but is self limiting. I am hoping the endo can clear this up for me. I dunno though, my dad has hypothyroid so it may be in the genes. 

But the heart skips, ugh, they woke me up last night. 

[GFinDC]

On 10/12/2016 at 0:30 PM, ironictruth said:

I had an ultrasound in July which pointed to Hashimoto's but the antibody test was negative and the TSH levels are normal. I have since learned that only one antibody test was done and there are more. My doc at the time was just going to drop it but something did not feel right. 

I found myself an endo and he is going to repeat the thyroid ultrasound soon. My neck/Ear has pain and is tender To touch on the right side. This started with a gluten challenge last year.

Oddly, I went out and bought a bp monitor when I staryed getting sick. I will go from bp 90/50 one week and bradycardia to bp 130/90 and hr 90. Nothing shocking to the docs, but a big change to me. 

I had done some research and it may be subacute thyroiditis, which can last for months but is self limiting. I am hoping the endo can clear this up for me. I dunno though, my dad has hypothyroid so it may be in the genes. 

But the heart skips, ugh, they woke me up last night. 

I'm glad you already checked in Hashimoto's Thyroiditis.  Getting an endocrinologist to check your thyroid is a great idea.  TSH is produced by the pituitary gland, not the thyroid.  So it doesn't tell you if you have too much thyroxine in your blood.  Just if your pituitary gland is calling for my thyroxine.  You could still have hyperthyroid symptoms from too much thyroxine being produced by the thyroid.

Signed,

definitely not an expert.

There are a lot of forum threads discussing Hashimoto's.  It might help to search for them and read a few.  Something might sound familiar.

[ironictruth]

48 minutes ago, GFinDC said:

I will check out the other threads and ask my endo. I see him next week.