So here's my story...any help greatly appreciated

[Laura.D]

Hi Everyone,

I've never really posted on an internet message board about my health before, so please forgive me for any TMI - I'm just at the end of my rope and thought I might turn to a community of others with similar problems to mine for help. I've been to more doctors than I count, and the majority are absolutely not helpful.  I was diagnosed with Celiac Disease 3 years ago, and I'm gluten free, (though I've had the occasional "glutening" at restaurants, etc. from time to time) however, as of late I've been suffering from debilitating, sharp and stabbing abdominal pain. It's a sharp, stabbing pain on both sides and kind of a burning sensation in the middle around my belly button. At first the pain was worse on the right side, but now it seems to be worse on the left. It even goes into the tops of my thighs on both sides, and today it's moved into my back. It feels like this painful heavy pressure across my mid-upper back and then it also feels crampy/sharp around where my kidneys are.  I also have this horrible taste in my mouth 24/7 and am excessively salivating like I'm about to vomit at all times, but I never do. I'm super nauseated every day and have a decreased appetite - I was barely able to eat at all this past weekend. I was also having terrible, frequent diarrhea, but the last doc gave me IBS medication which seems to be turning the diarrhea into constipation. 

I don't have a gallbladder anymore, though the pressure/pain in my back reminds me almost exactly of what the gall bladder attack felt like before I had it removed. 

I've been to the ER twice and about 5 doctors, and they didn't find anything in the CT scan, blood tests, ultra sounds, stool tests, etc. and basically just keep telling me they can't find anything wrong. That doesn't make sense to me because this has been going on for almost 2 months, and right before I came down with this - whatever this is - I was pretty much fine. In fact, for 2 weeks in Feb. I was traveling around for work, I was rock climbing in Phoenix and hiking, and doing outdoor activities feeling great, and then by the end of Feb. after I'm back home for about a week all of a sudden I'm debilitated and can't get out of bed. 

If anyone has any suggestions or has ever experienced anything like this, I'd be super grateful to hear your stories and suggestions. 

Thanks!

Laura

[Estes]

This may be way off but do you eat oats?  I felt better until I started eating kind bars and one bowl of gluten free oatmeal.  All of it said gluten free but my body reads oats like gluten. Now I am oat free too.  With your traveling maybe you ate lots of something your body does not like?

[cristiana]

Hello Laura

Welcome to the forum. I'm so sorry you are in all of this pain.  

I have a few questions.

You mention the pain around your kidneys.   Is there any chance you could have a kidney infection of some sort - I wonder if this is one of the things the doctors have looked at?

What about the water sources you drank from whilst away?  

Also, can you describe the strange taste you have?

You mention they did a CT scan - what of?

Also, have the doctors actually looked at your gut (endoscopy/colonoscopy).

Sorry - rather a lot of questions there!

 

 

[Laura.D]

HI Cristiana,

I wondered about the kidney infection thing too, but they did a test on my urine and said it was fine. The first time I went to the ER (This was at the beginning of this whole ordeal) they did a CT scan of my abdominal area and said they didn't see anything wrong. I went back a week later because the pain had gotten much worse and I couldn't stand up straight or go up and down stairs very easily. I explained that the pain had increased and changed since they did the CT scan, but they didn't do a second one because they said it would be too much radiation too close together since I'd just had one a week ago. 

I was in San Diego and Phoenix while I was traveling and didn't go out of the US - actually work paid for me to have a pretty fancy hotel, so I didn't really think much about the water. Though I did go into the Pacific Ocean while I was in San Diego a little bit - I waded in up to my knees or so. 

The strange taste I have in my mouth is hard to describe - it's not really metallic or bitter, it just tastes bad, kind of like old food or bad breath, maybe kind of "tangy."

I actually had the colonoscopy and endoscopy done last July. I was diagnosed with Celiac Disease 3 years ago based on a blood test in a different city, and now that I've moved across the state, this doctor said he saw no evidence of Celiac or anything else on my colonoscopy/endoscopy scan and that everything looked fine. He also said the blood test he did on me was negative for Celiac and acted like he didn't take the idea of Celiac Disease very seriously. He acted like it was super rare and told me how it's "over diagnosed." He told me I could eat gluten again and go back to a normal diet the week before he did the colonoscopy/endoscopy procedure, which I did for about 4 days until I got so sick I thought I was dying. This was about 9 months ago. - All that to say that I don't really trust that doc or his results, especially since when I read the test results myself he mentioned having found bright red blood per rectum and I don't think he ever mentioned that to me - so either I was bleeding or the docs caused it with their technique.  

I also found out in that first ER visit with the CT Scan I had diverticulosis but they said it hadn't turned into diverticulitis yet. 

I keep getting told that nothing is wrong, but I feel awful and I'm not always like this - something clearly changed between early Feb. and Feb. 20 when this all started happening. 

Thanks for the questions! I appreciate your help!

 

 

 

[Estes]

How is your apendex? Burst?

[Laura.D]

Hi Estes,

They said it looked fine in that first CT Scan, but I don't know if the situation could have changed since then since when I went back to the ER the second time they didn't want to do a second scan. Luckily, the pain did get a little better over the past month and I'm no longer doubled over and unable to stand up straight. But it still hurts and I'm nauseated every day. I would say the pain is sharp and stabbing in both sides, burning/stinging in the middle, especially around my belly button - sometimes crampy and dull/achy in my lower abdomen stretching into my upper legs too, and then a pressure and crampy feeling in my lower and mid back going from the base of my spine up to my shoulder blades. 

[Estes]

Have you had a fever with any of this?

[Laura.D]

A little bit, but it was very low grade and not very often. I have had chills though, even without a fever. 

[cristiana]

I'm wondering if you can identify anything, anything at all that you have been eating or drinking that is a bit different to normal.  Could there be something wrong with the water supply to your home (I guess if you live with others they would be feeling ill too?)

Also, this burning thing, I have an umbilical hernia caused by a pregnancy...  I am surprised I have not been offered an operation but I think it must be so small as to not worry the doctors.   I find though that on bad days it feels a bit like a stabbing pain around the belly button and the pain can extend either side  No chance of a hernia, I suppose?

I'm sorry if these sound like silly suggestions.

 

[Estes]

I know a burst apendex can be missed.  Sounds like you are fighting something.  If you are on the upswing, maybe you will recover on your own?  Do you believe you are on the way up or are things getting worse for you?

[cyclinglady]

Since this started did you actually get a celiac blood panel done?  Glutening symptoms can change.

 They certainly changed for me.  My main and pretty much only symptom was anemia.  Found out about celiac disease when I went for a GI consult to get a colonoscopy because I was over 50.  Got both the colonoscopy and the endoscopy and the rest was history.   I was glutened last July.  Six weeks later, I was still sick.  My new GI suspected SIBO, but I asked to rule out celiac disease.  I was right.  Antibodies were high.  Took two months from my glutening to recover and another month to get back dairy as I became lactose intolerant again!  Ugh!  

This might be helpful if it is gluten....

Open Original Shared Link

The doctor you saw and claimed you did not have celiac disease is an idiot!  This is for everyone else.....get and keep copies of your lab reports and doctor's notes.    New doctor?  Plop down a copy of your lab tests!  I even carry a letter from my old GI stating that I must maintain a gluten-free diet due to having celiac disease (handy to have when traveling).  

[cyclinglady]

Another thought from someone who also does not have a gallbladder anymore....

Bile duct issues?  Just a possibility.  

[icelandgirl]

Hi Laura,

(((Hugs)))

I'm so sorry that you are going through all this!  Keep pursuing answers...don't let Dr's ignore you.

My thoughts agree with some of the others mentioned...bile duct, appendix, get all antibodies rechecked in case you are getting gluten.  Kidney infection?  I'm assuming they didn't see kidney stones on your CT?  

I don't know what else to suggest, but it's got to be something.   I sure hope you get some answers.

[ironictruth]

 

I too have odd unexplained pain out of the blue. ENT thinks ear/neck is TMJ and cardio thinks back may be hitting the pavement/treadmill for the first time in 20 years 6 months ago. Who freaking knows....

But....you were hiking/climbing etc 2 months ago. Pinched or irritated nerves can cause radiating pain. See a chiropractor.

Perhaps also get pancreatic enzymes checked and gyno issues checked. 

[Laura.D]

Hi everyone,

Sorry I'm just now seeing these- I actually fell asleep accidentally after work.  I have been going to a gyn over the past week and she did some ultrasound imaging. The test results I saw on the patient portal all said everything was normal, but I haven't gotten to sit down and talk with the doc yet.

Also, in the ER, hey did say my liver enzymes were kind of high but not enough to mean anything - I wasn't sure what that meant. 

I think I am on the upswing, but more like the "up plateau" - I got a little better but then I just kinda stayed at this point. I forgot to mention in addition to permanent nausea I also feel a little dizzy/lightheaded sometimes. However, I think the dizziness could be a side effect of the Bentyl. When the doctors didn't know what was wrong they gave me Bentyl for IBS. I don't really know that it helps that much, it did help a little. 

I should also mention that exactly 1 year ago almost (toward the end of Jan 2015) I was hospitalized for 3 days for a bout of Colitis and bad gastroenteritis to the point that I couldn't eat. They said the Colitis was caused by an infection and gave me flagyl and also a second antibiotic and eventually I got better. That one took about 2 months to recover from too, I believe. I've been wondering if I have chron's or UC or something else that tends to flare up from time to time, though I guess they would've seen that on the colonoscopy.

[cristiana]

Interesting about the liver enzymes - they can sometimes hold clues.  Any chance you can get a copy of those to share with us?

It sounds like you might be having a flare of something along the lines you are suggesting.    When you were away were you cooking all your own stuff?   I am thinking about what cyclinglady has being saying and I am just wondering if you were subjected to gluten to the point that it might have set this whole thing off.

I still get awful burning if I eat pure gluten-free oats so I have decided that I would probably get the same reaction if I ate a signficant amount of gluten but of course I don't want to try it.  That burning is nasty.

[ironictruth]

Huh, I had not thought of the burning. During my gluten challenge I had spells of burning pain in my mid section above the belly button. It felt like it was going through to my back. I paced the floor some nights. Took hot showers. One day it radiated to my teeth. I thought it was my heart for a bit. I took tums hoping it was some kind of hyped up heart burn. They did measure my pancreatic enzymes because the pancreas is there and can be a reason why liver enzymes are up. Alcohol and celiac can elevate them too. 

Looking back, I wonder if it is the celiac or solar plexus. I have no idea how this relates but I know it involves our adrenals, stomach, pancreas. I think it also ties into the vagus nerve and sympathetic nervous system and if that is affected, wacky stuff can happen. 

And yes, as cyclinglady mentions, the back pain reminds me of the pain from my gallbladder when my bile duct was infected. I was told in ER there can be stones in duct left behind but unusual. 

Might be worth a visit to an integrative doc. I am headed to one myself! 

Sounds like you feel just awful. I hope it resolves soon. 

[Laura.D]

Actually while I was away I was stuck eating mostly restaurant food, so that could be related. This just feels different than the usual gluten attack that lasts a few hours or a few days and then is over. The worst gluten attack I've had so far (unless I'm having one now) was about 5-6 days.

When I was in the hospital last year they noticed some air trapped in my bile duct from when I had my gall bladder out, but I had it out over 11 years ago, so it seems weird that it would just now be affecting me. I guess it's possible though. I also had thyroid cancer 3 years ago at the same time I found out about the Celiac Disease, and had it removed, and when they did I know they  knicked my Vagus nerve during the surgery because my thyroid had gotten so enlarged and swollen they couldn't really avoid hitting it. So if the Vagus Nerve is somehow related, maybe that makes sense...

I actually went to an integrative doc, and the response there was the same, I bought 200 dollars worth of supplements after my first appt. and then at my follow up appointment, I got the typical response of "well the  ER didn't find anything, and I didn't find anything, and the colonoscopy didn't find anything...." and then they imply it's emotional or psychological. I'm just like UGH! I'm not making this up!!! I was fine and then I wasn't, I was one way, and then I was another - something changed. That's the frustration I've been dealing with. I actually noticed I felt a lot better in general in San Diego and Phoenix in the warmer climates. I thought that was weird too. 

This really is awful - I'm at work right now hunched over with stomach pain feeling nauseated.  

 

[cyclinglady]

I am STRONGLY encouraging you to rule out a glutening by testing and getting a full celiac panel.    Why continue to speculate?  Glutening symptoms can evolve and change.  It can also trigger other issues.  What might have been a few days of misery can extend for months.  

Bile duct issues are serious.  My aunt had her gallbladder out (non-functioning, family curse:  six out of seven siblings had gallbadder removed for function reasons)  and four years later she was dead at age 54 from a second attempt to put in a stent that would keep her bile duct from collapsing.   She died from sepsis within 48 hours of her simple stent procedure.   Did she have celiac disease?  I bet she did but it was never diagnosed.  

I am not saying that you have a bile duct issue.  I am not a doctor.  But something's wrong and your doctors are not able to put it all together.  Help them out and you'll help yourself!  

An ER doctor is not going to run a celiac panel.   Your GI will.  I urge you to send an email requesting a lab order.  At least rule out celiac disease.  Then worry about other possible issues.  

Take care! 

 

 

[ironictruth]

"I was fine and then I wasn't".

Yup! 

I agree with cycling lady. Go get it checked. It may not go up after a few glutenings but have the old glidian tests done too. I never did. I  guess they are not reliable for diagnosis but good at measuring adherence to the diet. I read a bunch of articles on vagus nerve and celiac disease. I never had issues like this until I started my gluten challenge either. I was convinced they could not be related I'm still not a hundred percent sure. But it is the only thing that makes sense at this point. Keep following up with doctors if anything gets worse so that you don't automatically assume it's gluten. But just know that it can cause some wacky stuff, my brother is a confirmed Celiac and he had all sorts of issues. most of the doc's do not recognize this they just think that you should have abdominal issues only.

[Laura.D]

I actually had the celiac panel run last July and then also the colonoscopy/endoscopy, and was told it all came back negative, and since the doctors are all in the same health system around here, they don't seem to think they should run them again. Last week I did drive further away to a new health system though, so maybe they would redo the tests. 

[ironictruth]

To be clear, you said you had positive bloodwork 3 years ago? How long were you gluten-free then on gluten before the biopsy? Do you know what bloodwork was run? Did you have the genetic tests done? 

[Laura.D]

Yeah, 3 years ago I had an endocrinologist who was working on my thyroid issues do blood work, and she said I had Celiac disease. I couldn't tell from what she said if she ran the actual panel or not because the conversation went something like this: I said "I get sick every time I eat." What she said was "you have low Vitamin D, low Vitamin B, and almost no nutrients or minerals in your blood, and you had your gallbladder out when you were 21. You don't see someone with such low vitamins/minerals in their blood and who had their gallbladder out so young unless they have Celiac Disease." I would have to send off for those records because they were done in a completely different part of the state 3 years ago.  I can confirm that gluten makes me incredibly ill. 

[ironictruth]

"He told me I could eat gluten again and go back to a normal diet the week before he did the colonoscopy/endoscopy procedure, which I did for about 4 days until I got so sick"

Although the suggestion is at least 2 weeks for a biopsy and about 12 weeks for bloodwork there is no guarantee 2 weeks is going to destroy the villi enough to show up on biopsy.

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Your positive bloodwork is probably more accurate then your post gluten-free tests. Get your records!

Looking back, I really wish I had chosen my GI doc and not went with who my primary sent me to. I also wish I had spoken more with my celiac sibling prior to going. I am sure my GI is good for routine stuff but he was pretty celiac clueless. 

[ironictruth]

6 minutes ago, Laura.D said:

Yeah, 3 years ago I had an endocrinologist who was working on my thyroid issues do blood work, and she said I had Celiac disease. I couldn't tell from what she said if she ran the actual panel or not because the conversation went something like this: I said "I get sick every time I eat." What she said was "you have low Vitamin D, low Vitamin B, and almost no nutrients or minerals in your blood, and you had your gallbladder out when you were 21. You don't see someone with such low vitamins/minerals in their blood and who had their gallbladder out so young unless they have Celiac Disease." I would have to send off for those records because they were done in a completely different part of the state 3 years ago.  I can confirm that gluten makes me incredibly ill. 

Huh. I never thought of that connection. I had mine out at 17. 

Well, regardless, as my brother told me, it takes total destruction of your gut to get the "celiac" label. But before the disease progresses to that it has to start somewhere. 

I know, it sucks though. You are trying to figure out why you feel so awful and it would be nice to have some diagnosis to swear ar. I ended up taking bandaid meds for non or nearly non existent conditions recently and I think they cause more side effects then you really have no idea what is going on. So I stopped them and am doing b complex, small dose of iron, vitamin c. I too was crazy dizzy and found that my protein was normal, but right at normal and my globulin and alk phosphate were a bit low. So I amped up the protein a lot for a couple of weeks which helped with the dizziness. I literally had some kind of crazed food crisis for the first few weeks off of gluten. I had to eat constantly. I also have pain between my shoulder blades and in my ear that developed with all of this bs. Visual changes, bp variances, and I swear my diaphragm is squished.  Like you, I was fine, then bam.

If anything worsens, insist on tests. I am convinced my celiac brother will ignore any future issues assuming it was a glutening. I even have to see a damn neuro now. I