Blood Test Negative, But Still Sick

[BigGuy]

Hi,

 

I'm new here.  I've had stomach issues since college, which was 15 years ago.  I'm now 35 and about 2 months ago I started having stomach pain that was different.  It started out with the worst stomach sickness I've had in a long time.  It was about as bad as food poisoning, but I wasn't vomiting.  Worst diarrhea I've ever had, yellow stool, horrible stomach pain and cramping.  It took about 3 days to pass.  I even had a speech that I was supposed to make and had to cancel. 

 

I went to the doctor and he said it was a stomach virus.  He seemed more concerned on whether or not I had sleep apenia (spelling?).  He gave me prilosec and said come back in a month if nothing had changed.  I've had other spells since then, but not nearly as bad.  So I went back.  Again, he asked about sleep apenia.  Finally I asked him if we could talk about my stomach.  He gave me some meds to relax my muscles when cramping and said if it hasn't changed in a week, come back, see another Dr. and see if they can figure it out.  I know, crappy doc.

 

I had a friend tell me I might have a gluten intolerance, so I had them run a blood test, which came back negative.  My stomach is still in pain most days, I get these sharp to dull pains in my mid section by my ribs, and I feel bloated and sick.

 

Can anyone help me.  Going back to the Dr. on Friday to see someone else and get a 2nd opinion.  I've been trying to lay off the gluten for about a week now, and some days are better, but most...I'm still sick.  Any ideas? Thanks!

[beth01]

Welcome to the forum. Do you still have your gallbladder? That can cause a lot of issues that mimic celiac. That would be worth checking into. I would also ask for a copy of your lab results before your appointment on Friday. If you can't get a paper copy, ask for the test and the results with normal ranges and write them down so you can post them here. That would help us a lot and give us an idea of what tests you need to still ask for to test for celiac. Most doctors only run one test ( tTg IgA ) when there is a whole panel that can be run.

About your pain, does it run along the length of your ribs underneath your stomach and out to each side or is it a burning pain right under your sternum about where your stomach meets your esophagus? I had the burning pain underneath my rib cage when my gallbladder took a digger compared to the burning pain right in the middle for a year leading to my celiac diagnosis.

I hope you find some answers. It really sucks not feeling well for so long and not knowing why.

[cyclinglady]

What tests were run?

Here is a link to the University of. Chicago's Celiac website that shows the list of blood tests:

Open Original Shared Link

Keep eating gluten until all testing is complete!

P.S. Has your gallbladder been checked for stones and functionality?

[BigGuy]

Here are my test results...

 

Egg White   <0.10 Milk IgE   <0.10 COD FISH F3   <0.10 Wheat   <0.10 F010 Sesame Seed   <0.10 Peanut   <0.10 Soybean IgE 2   <0.10 Shrimp   <0.10 Walnut   <0.10 Scallop IgE   <0.10 HAZELNUT F17   <0.10 Tissue Transglut Ab   0.9 TISSUE TRANSGLUTAMINASE IGG AB   <0.6 GLIADIN (DEAMIDATED) AB (IGA)   2.0 GLIADIN (DEAMIDATED) AB (IGG)   <0.4 Gluten  

<0.10

 

I'm going to the Dr. on Friday and will ask about my gall bladder.  I'll be honest, I'm scared to eat gluten.  Mainly because I can't make it from home to work and back and do all the things I need to do without having to stop 2-3 times to use the bathroom.

 

Regarding my pain, it's between my chest and stomach on both sides.  Sometimes it's in my back as well.  Today when I was on the floor playing with my kids, I had a sharp pain on my right side in those spots. 

[beth01]

I would definitely have them check your gallbladder. Also ask if they did a total IgA. If you are deficient in IgA, it makes the IgA based testing inaccurate. Also ask about having EMA testing done ( endomysial). If none of your testing comes back pointing to celiac, you can awlays cut gluten out of your diet to check for improvement. There are a few people on here that adhere to a strict gluten free diet since they haven't been able to obtain a diagnosis but it works. Good luck with your appointment on Friday and I hope you get some answers soon.

[BigGuy]

*UPDATE:

 

Went to the Dr. this morning, actually got to see my doc and not the fill-in.  He is concerned that it's my gall bladder as I've been having attacks the last two days.  Last night and today I literally thought I might not make it.  The attacks were horrible. 

 

He was concerned enough to order and ultrasound and they bypassed others to get me in.  So not sure what that means, but will hopefully hear back before Noon.

[cyclinglady]

If they find nothing on the ultrasound (no gallstones), ask for a HIDA scan to check for functionality.

[BigGuy]

Just got a call from the Dr.  They are going to schedule a HIDA scan for next week. 

[BigGuy]

This weekend was horrible.  The pain increased so I ended up at the ER last night.  Their care was horrible.  Not only did I pass out when they were trying to insert the IV (they couldn't find a vein and poked 7 different areas), my IV exploded when doing the CT scan.  My arm was in so much pain and it scared the snot out of me.

 

The good news is that it's not my liver, pancreas, and I don't have an infection nor am I bleeding internally.  Because the pain has shifted back and forth between my right and left side, they have cancelled the HIDA scan and are sending me to a GI specialist.  This is the first time in my life I've had to be my advocate with medical stuff as I feel like I'm continuing to get the run around.  Hopefully can see the GI this week.

[cyclinglady]

Ugh! I NEVER presented with pain anywhere near my gallbladder for 25 years! My pain moved around. For a while they though it was my colon, uterus, appendix, or ovaries. I used to pass out from my gallbladder attacks and would go into shock. My attacks occurred annually. It took one out-of-state surgeon who was called for a consult who thought it was my gallbladder despite the ER doc and the Internal Medicine doc disagreeing with her. Nothing showed up on my CT or ultrasounds. The HIDA scan clinched it. A non-functioning gallbladder with a 0% ejection rate.

Like my thyroid, it would work on and off. Maddening!

Push for it if all else fails.

[cyclinglady]

Oh, they had a hard time getting the IV in most likely due to DEHYDRATION!

[BigGuy]

So...it's been a long month to say the least.  I ended up having the HIDA scan done.  It wasn't terrible at all.  Watched a movie and halfway through the process they gave me a chocolate protein shake....yum!  The test came back stating that my gall bladder was functioning at 92%, which they said is higher than the national average...whatever that means.

 

The pain kept getting worse and worse, so I finally called my GP and said I can't wait another month to see a GI.  I had to practically force them to send a referral to another GI, but they did.  Saw the GI on Monday and he ordered a CT scan and an endoscopy/colonoscopy.

 

Had the CT scan Thursday and it showed up as me having a fatty liver with an elevated enzyme.  So I was told to drop 25-30 lbs in the next few months so I can come back and they can check that enzyme again.  They said fatty liver will go away if I can lose weight and eat better.

 

Had the scopes today.  No Barrett's esophagus, but they did take a biopsy to make sure.  Did have a polyp that they removed and sent off.  Also they found inflammation from gastritis as well.  They also took a biopsy for celiac.  The Dr. has ruled it IBS and has given me probiotic's and some other type of herb to take.  Also said I need to increase my fiber intake as well.

 

So anxious to hear what labs will say, but gotta say that with IBS I'm not even sure where to begin.

[nvsmom]

IBS is often the diagnosis they give to celiacs or those with non-celiac gluten sensitivity (NCGS) before they have figured out the cause of the pain.  Someone around here used to joke that IBS is a doctor's acronym for "I Be Stumped".  

 

Do you know the ranges for those celiac tests you had run?  The tTG IgG, DGP IgA, and DGP IgG tests look negative but if your range is very small (like 0-1) it could be positive.

 

I would advise you, if you are satisfied all of your celiac testing is done, to try the gluten-free diet for a few months.  You could have NCGS, which is evrey bit as nasty as celiac disease but does not include intestinal damage, so you may need to eat gluten-free.  Celiacs, and those with NCGS, do not always (or even often) feel better immediately after going gluten-free. Some symptoms can take months or years to resolve so giving the gluten-free diet a trial of around 6 months is often the only way to go.  Make sure you are strictly gluten-free. Trace amounts every few weeks is often enough to set people back and hamper their recovery.

 

Best wishes to you.  I hope going gluten-free long term will help you and you'll begin to feel better soon.

[edgymama]

"I be stumped" hahahaha! Yup that is what I have been diagnosed with

 

I agree with the others to at least try out the gluten free diet for a few months or more and see if it helps as it sure won't hurt to try it! Good luck.