Docs can't seem to figure me out - wondering if anyone has had similar experiences

[LaurainAZ]

Hi everyone,

I was diagnosed with Celiac Disease several years ago in 2012 (though I've had several doctors go back and forth, some say it's Celiac, some say its a gluten sensitivity - regardless when I eat it I often get so sick I'm bedridden for a few days and I get skin rashes and joint pain). I also had thyroid disease and thyroid cancer, and had my thyroid removed in early 2013 and was also diagnosed with PCOS around the same time. At first I started to get better after going gluten free and then having my thyroid removed and going on Synthroid to replace the hormones. But in late 2014 and early 2015 I suddenly became really ill with GI symptoms and this persists until now, almost 3 years later. The weird thing is this all started with the first menstrual cycle I had had in 5 yrs (I suddenly had a period without having any for 5 years THE DAY BEFORE all this started - TMI, sorry for that, but I think that it's related, though most docs don't seem to think it's significant.)

It started in Dec. 2014-  I was having intense abdominal pain and frequent (frequent is an understatement) diarrhea (again, TMI, I know), and even had pain in my upper abdomen as well as my lower. I also had joint pain, some shortness of breath and pain in my back as well.  After a couple of weeks it suddenly got so bad and I was so dehydrated I was hospitalized even though they couldn't tell me what the cause was - the best they had was that it was some sort of infectious colitis. The pain was so intense that I thought I might have even had a kidney stone. After this, I started getting sick when I ate almost anything in general, even if it didn't have gluten in it, and I had to go to the hospital a few more times for the same reason. Most of the time I was told it was just gastroenteritis (even though I was so dehydrated my lips were gray and I couldn't walk, and I'm pretty sure that no one gets gastroenteritis about every 2-3 months, which is how often I was ending up in the ER), and if they didn't tell me it was gastroenteritis I was told it was IBS.

I've had all the tests done, stool sample, colonoscopy, 2 endoscopies, CT Scans, pelvic ultrasounds, everything - and they never find anything significant. However, The IBS diagnosis doesn't sit right with me - I feel inflamed and have dangerously low levels of vitamin D which is a marker of inflammation, and I've had other autoimmune disorders - in fact autoimmunity runs in my family. So far all they've  found is "mild inactive gastritis. I also got diagnosed with diverticulosis, but they said it wasn't infected to become diverticulitis, so it still didn't give me answers. Since then I've been trying to get answers, but all anyone ever tells me is that I have IBS. - I should probably add after all the GI ER visits I had I also started having alot of issues with kidney pain and was diagnosed with a kidney infection once, though I'm pretty sure I've had that at least twice.

Right now my symptoms are:

• that I'm frequently nauseated for most of the day, and I often avoid eating.
• Diarrhea
• Extreme fatigue
• Abdominal pain
• Sometimes I still get the kidney pain
• Constant Pelvic pain
• Joint pain
• Lomotil is the only medication to give me any relief, and it's basically just prescription strength Immodium - it doesn't always work, but a lot of the time it does. I have abdominal pain all the time, usually sharp and stabbing or dull and achy. 

Since things aren't showing up on tests it starts to feel like maybe you're crazy - but it most definitely is happening to me and has been for years now. Can anyone else identify with this situation? 

[artistsl]

3 hours ago, LaurainAZ said:

Hi everyone,

I was diagnosed with Celiac Disease several years ago in 2012 (though I've had several doctors go back and forth, some say it's Celiac, some say its a gluten sensitivity - regardless when I eat it I often get so sick I'm bedridden for a few days and I get skin rashes and joint pain). I also had thyroid disease and thyroid cancer, and had my thyroid removed in early 2013 and was also diagnosed with PCOS around the same time. At first I started to get better after going gluten free and then having my thyroid removed and going on Synthroid to replace the hormones. But in late 2014 and early 2015 I suddenly became really ill with GI symptoms and this persists until now, almost 3 years later. The weird thing is this all started with the first menstrual cycle I had had in 5 yrs (I suddenly had a period without having any for 5 years THE DAY BEFORE all this started - TMI, sorry for that, but I think that it's related, though most docs don't seem to think it's significant.)

It started in Dec. 2014-  I was having intense abdominal pain and frequent (frequent is an understatement) diarrhea (again, TMI, I know), and even had pain in my upper abdomen as well as my lower. I also had joint pain, some shortness of breath and pain in my back as well.  After a couple of weeks it suddenly got so bad and I was so dehydrated I was hospitalized even though they couldn't tell me what the cause was - the best they had was that it was some sort of infectious colitis. The pain was so intense that I thought I might have even had a kidney stone. After this, I started getting sick when I ate almost anything in general, even if it didn't have gluten in it, and I had to go to the hospital a few more times for the same reason. Most of the time I was told it was just gastroenteritis (even though I was so dehydrated my lips were gray and I couldn't walk, and I'm pretty sure that no one gets gastroenteritis about every 2-3 months, which is how often I was ending up in the ER), and if they didn't tell me it was gastroenteritis I was told it was IBS.

I've had all the tests done, stool sample, colonoscopy, 2 endoscopies, CT Scans, pelvic ultrasounds, everything - and they never find anything significant. However, The IBS diagnosis doesn't sit right with me - I feel inflamed and have dangerously low levels of vitamin D which is a marker of inflammation, and I've had other autoimmune disorders - in fact autoimmunity runs in my family. So far all they've  found is "mild inactive gastritis. I also got diagnosed with diverticulosis, but they said it wasn't infected to become diverticulitis, so it still didn't give me answers. Since then I've been trying to get answers, but all anyone ever tells me is that I have IBS. - I should probably add after all the GI ER visits I had I also started having alot of issues with kidney pain and was diagnosed with a kidney infection once, though I'm pretty sure I've had that at least twice.

Right now my symptoms are:

• that I'm frequently nauseated for most of the day, and I often avoid eating.
• Diarrhea
• Extreme fatigue
• Abdominal pain
• Sometimes I still get the kidney pain
• Constant Pelvic pain
• Joint pain
• Lomotil is the only medication to give me any relief, and it's basically just prescription strength Immodium - it doesn't always work, but a lot of the time it does. I have abdominal pain all the time, usually sharp and stabbing or dull and achy. 

Since things aren't showing up on tests it starts to feel like maybe you're crazy - but it most definitely is happening to me and has been for years now. Can anyone else identify with this situation? 

Could it be endometriosis? My sister was diagnosed with PCOS. Her pain was so bad that she finally decided to have her ovaries removed. They realized during the surgery that she has endometriosis. She also deals with Hashimoto's and wouldn't be surprised in any way if she were gluten sensitive.

[kareng]

Did anyone test you for Celiac during the time you were eating gluten?  It would be a bit irresponsible for a doctor to say you have Celiac with no actual testing.

[LaurainAZ]

10 minutes ago, kareng said:

Did anyone test you for Celiac during the time you were eating gluten?  It would be a bit irresponsible for a doctor to say you have Celiac with no actual testing.

Yes - back in 2012 I had no idea I was gluten sensitive and had never of Celiac Disease, but I went to the doctor to find out why I was seemingly getting sick every time I ate. That doctor was the one who referred me to the endocrinologist who ended up finding my thyroid cancer and Hashimotos, and in the process of doing blood work she said the results also indicated I had Celiac Disease. 

[LaurainAZ]

13 minutes ago, kareng said:

Did anyone test you for Celiac during the time you were eating gluten?  It would be a bit irresponsible for a doctor to say you have Celiac with no actual testing.

I wonder about that too, but so far no doc is willing to do the surgical procedure to look for it. They say that since its an invasive procedure, they try to avoid it unless they are almost certain you need it. Instead they treat it preemptively. I had one doc do that by giving me birth control, and I did get a little better, but almost right after I got it (the depo shot), that's when the bladder and kidney pain started. It seems like it was almost a reaction to the depo because I had that same shot several years prior and it caused me problems then too, albeit milder. The doctor said it wasn't a reaction to the depo, but I looked it up and it seems like that shot causes lot of bad side effects, so it made sense to me. I can't take estrogen because I had a blood clot in my lung once.

In short, the depo shot, which can be a treatment for PCOS made my GI symptoms a little better, but if I remember right, most of the 3 months it was in my system, and even after that for awhile, I had horrible pain in my bladder and kidney area that recurred - pain which started within a week of getting the shot. 

[knitty kitty]

Hi, Laurain.  Has your doctor considered you might be having a reaction to the synthroid?  Did you get any other vitamin levels checked, besides just the vitamin D?  Are you taking any vitamin supplements?

After experiencing diarrhea for so long, I'm worried that your B vitamins are low.  Early symptoms of some B vitamin deficiencies include diarrhea. 

Are you allergic to Sulfa drugs?

 

[LaurainAZ]

Sorry I replied to this post twice.  new to the forum.

[LaurainAZ]

2 minutes ago, knitty kitty said:

Hi, Laurain.  Has your doctor considered you might be having a reaction to the synthroid?  Did you get any other vitamin levels checked, besides just the vitamin D?  Are you taking any vitamin supplements?

After experiencing diarrhea for so long, I'm worried that your B vitamins are low.  Early symptoms of some B vitamin deficiencies include diarrhea. 

 

 

 

I actually was put on another thyroid medicine to replace the synthroid for the past year and a half or so, but it wasn't making anything any better, so they switched me back to Synthroid about a month ago. I have low vitamin B levels too, I guess I have since 2012, that was one of the things that tipped the doctor off to look for the Celiac Disease in the blood work. She said I had low levels of almost all the important minerals and vitamins which showed malabsorption. I was put on 50,000 units of Vitamin D once a week for 8 weeks, and I'm 4 weeks into that now. It hasn't made a difference. I was taking B12 supplements too for awhile, but I'm not taking them currently. I didn't really notice a difference in how I felt even when I was taking them sublingually every day. 

[LaurainAZ]

48 minutes ago, artistsl said:

Could it be endometriosis? My sister was diagnosed with PCOS. Her pain was so bad that she finally decided to have her ovaries removed. They realized during the surgery that she has endometriosis. She also deals with Hashimoto's and wouldn't be surprised in any way if she were gluten sensitive.

I wonder about that too, but so far no doc is willing to do the surgical procedure to look for it. They say that since its an invasive procedure, they try to avoid it unless they are almost certain you need it. Instead they treat it preemptively. I had one doc do that by giving me birth control, and I did get a little better, but almost right after I got it (the depo shot), that's when the bladder and kidney pain started. It seems like it was almost a reaction to the depo because I had that same shot several years prior and it caused me problems then too, albeit milder. The doctor said it wasn't a reaction to the depo, but I looked it up and it seems like that shot causes lot of bad side effects, so it made sense to me. I can't take estrogen because I had a blood clot in my lung once.

In short, the depo shot, which can be a treatment for Endometriosis, made my GI symptoms a little better, but if I remember right, most of the 3 months it was in my system, and even after that for awhile, I had horrible pain in my bladder and kidney area that recurred - pain which started within a week of getting the shot. 

[knitty kitty]

Laurain, 

I strongly suggest you take your vitamins!  

Celiac Disease causes malabsorption which results in malnutrition.  The B vitamins are water soluble.  They need to be replenished every day because your body can't store them.  

The B vitamins all work together.  If you're low in one, you need to take the whole range because they depend upon each other to work properly. 

Open Original Shared Link

If you are not eating much and not digesting and absorbing well, you're not going to be able to get enough vitamins from your food.  

I had a severe bout of malnutrition before diagnosis. My doctors were baffled, too.  They had never seen pellagra before.  

Lack of certain B vitamins causes kidney problems.

Please discuss this with your doctor and nutritionist.  

[LaurainAZ]

5 minutes ago, knitty kitty said:

Laurain, 

I strongly suggest you take your vitamins!  

Celiac Disease causes malabsorption which results in malnutrition.  The B vitamins are water soluble.  They need to be replenished every day because your body can't store them.  

The B vitamins all work together.  If you're low in one, you need to take the whole range because they depend upon each other to work properly. 

Open Original Shared Link

If you are not eating much and not digesting and absorbing well, you're not going to be able to get enough vitamins from your food.  

I had a severe bout of malnutrition before diagnosis. My doctors were baffled, too.  They had never seen pellagra before.  

Please discuss this with your doctor and nutritionist.  

I'm taking the vitamin D because the new endocrinologist prescribed it, but this time they didn't prescribe the B vitamins. I should preface this with I just moved across the country to Arizona so I had to get new doctors for everything, which is both good and bad I suppose. Though I suppose I could go to the nutrition store to get some B vitamins. I don't know if they checked the B levels in the last batch of tests I had done, and I do suspect it's still low because it always is. The last doctor I had only prescribed B12, but they are setting me up with a nutritionist in June, so I can ask them about it at that appointment. 

No one has mentioned pellagra to me so far, and I'd never heard of it until now- but I just looked it up and I think that might be a lead to follow. Thanks!  

[knitty kitty]

Let the new doctors test your vitamin levels before you start supplementing because the results won't come out accurately.

The four D's of pellagra are diarrhea, dermatitis, dementia and death.  Deficiency diseases don't just happen to alcoholics.  They happen to people with malabsorption. Celiacs have malabsorption.

So glad that you're going to get your vitamins checked! 

[ravenwoodglass]

Sorry you are going through all this. Have they rerun your celiac panels?  That should be the first thing your new doctors do to make sure that your levels are down.

[ironictruth]

Did they actually find  anything wrong with a kidney or is that where you are describing some of the pain area is?

How does your gallbladder look?  is it referenced in any test that you have the results of?

Have your pancreatic  enzymes been checked during any of these episodes?

 Can you get a hold of which blood test you had that pointed towards celiac?

 what does your colonoscopy report say? Any  mention of difficulty getting the scope through?

[LaurainAZ]

9 hours ago, ravenwoodglass said:

Sorry you are going through all this. Have they rerun your celiac panels?  That should be the first thing your new doctors do to make sure that your levels are down.

That's where it gets tricky - the first doctor that diagnosed me with Celiac didn't find the gene/antibodies, but based on a lot of other things she found in my blood work she still diagnosed me with Celiac Disease. I know one of the things she based this one was the severe lack of basic nutrients- vitamins and minerals - in my blood, and the fact that Celiac Disease and thyroid problems go hand in hand quite often. Also, I had my gallbladder removed when I was 22, so she said the only time you see someone with such low levels of nutrients in their blood and a gallbladder removed so young is when someone has Celiac Disease. So when another doctor ran the same test, he told me he didn't find the gene/antibodies, so I probably just have a sensitivity, and a sensitivity means that gluten doesn't damage your lining, it just makes you feel sick. Except, I obviously have malabsorption based on the many, consistent tests of low just about everything in my blood. So that's confusing to me. I also feel inflamed, like I mentioned, I get joint pain, skin rashes, itchy all over, in addition to the GI symptoms if I get glutened. 

[LaurainAZ]

8 hours ago, ironictruth said:

Did they actually find  anything wrong with a kidney or is that where you are describing some of the pain area is?

How does your gallbladder look?  is it referenced in any test that you have the results of?

Have your pancreatic  enzymes been checked during any of these episodes?

 Can you get a hold of which blood test you had that pointed towards celiac?

 what does your colonoscopy report say? Any  mention of difficulty getting the scope through?

As far as the kidney goes, they found blood in my urine but no stones when they did a CT scan, which is why they gave me the diagnosis of kidney infection. I had to present at a conference for work that day, and I did so with the color completely drained from my face, in a cold sweat, and horrible pain in my back and bladder areas. I could hardly stand. It was really awful. 

I had my gallbladder removed when I was 22 - I remember now that you mention it the doctor that diagnosed me with Celiac Disease initially said that I had such low levels of minerals, vitamins, and basic nutrients in my blood, and the only time you see that, along with someone having their gallbladder removed so young - is with Celiac Disease, even though she didn't find the gene/antibody. I'm actually in the process of getting those records, and should have them soon, since I'm having them sent to my new doctors here in AZ. 

The colonoscopy only showed a pre-cancerous polyp and bright red blood per rectum, which I'm still unclear on, even online I can't seem to figure out if that means they caused that with the instrument, or if it was just already there. Of course I'd been gluten free for a couple of years when they did the colonoscopy and small bowel biopsy, so most docs say that's an invalid test. I never had one done when I was still eating gluten.

Weirdly enough I also have a lot of swelling in my throat, things get stuck in my throat a lot, food, pills, etc. They did an endoscopy, and while they were doing that they stretched my esophagus to help that situation, but it still didn't help. 

I think I have all the symptoms of Chron's disease, and my husband does too, but they didn't find that either in the colonoscopy or the small bowel CT. 

I've had my pancreatic and liver enzymes checked too and my liver enzymes are always slightly elevated, but the pancreas is apparently always good, even though I often have pain under my ribs where those organs are. 

[ironictruth]

1) Have they re-run a urine screen to see if the blood is gone? This can be caused by multiple issues, including menstruation (obvious), infections, endometriosis, interstitial cystitis, etc.

2) Gallbladder-how old are you now? Have they looked at your bile ducts with an abdominal MRI?

3) Gene/antibody. Are you SURE the genes were tested? Often times the antibodies are done but the genes are not done until later.

4) Has lupus been ruled out?

5) Liver-was this normal in appearance on the ultrasound? I mentioned bile ducts above, is there any reference to the bile ducts on the abdominal ultrasound?

 

 

 

[LaurainAZ]

5 minutes ago, ironictruth said:

1) Have they re-run a urine screen to see if the blood is gone? This can be caused by multiple issues, including menstruation (obvious), infections, endometriosis, interstitial cystitis, etc.

2) Gallbladder-how old are you now? Have they looked at your bile ducts with an abdominal MRI?

3) Gene/antibody. Are you SURE the genes were tested? Often times the antibodies are done but the genes are not done until later.

4) Has lupus been ruled out?

5) Liver-was this normal in appearance on the ultrasound? I mentioned bile ducts above, is there any reference to the bile ducts on the abdominal ultrasound?

 

 

 

I had a urine test done recently and they found some white blood cells and leukocytes, but no blood this time. They thought maybe I had a bladder infection or UTI, but the culture didn't grow anything. 

I'm 34 now, so the gallbladder happened 12 years ago. I know they said they saw an air bubble once in the duct where the gallbladder used to be, but they weren't sure if that would cause all of these problems. They thought about surgery to clear that up, but then decided it wasn't necessary. 

As for the Gene/Antibody, I'm sure they tested for the gene because the GI doctor kept mentioning that I didn't have the gene so "I can't have the disorder" - even though all the signs seem to point to the fact that I do. Gluten does all kinds of crazy things to my body. 

I was tested for lupus and also RA once 3 years ago and they both came back negative. 

They said my liver looked a little fatty and somewhat enlarged on the CT, but just attributed it to being overweight and not eating the best. 

I've been struggling with my weight between the PCOS and insulin resistance, and feeling too sick to exercise (though I do anyway a lot of the time, even if it's just a walk). I don't eat very much usually because it's just easier not to, and that may be why I just keep gaining weight - my body might be in starvation mode, though I've been doing a little better on the lomotil and started eating more during the day at work. 

[ironictruth]

24 minutes ago, LaurainAZ said:

I had a urine test done recently and they found some white blood cells and leukocytes, but no blood this time. They thought maybe I had a bladder infection or UTI, but the culture didn't grow anything. 

I'm 34 now, so the gallbladder happened 12 years ago. I know they said they saw an air bubble once in the duct where the gallbladder used to be, but they weren't sure if that would cause all of these problems. They thought about surgery to clear that up, but then decided it wasn't necessary. 

As for the Gene/Antibody, I'm sure they tested for the gene because the GI doctor kept mentioning that I didn't have the gene so "I can't have the disorder" - even though all the signs seem to point to the fact that I do. Gluten does all kinds of crazy things to my body. 

I was tested for lupus and also RA once 3 years ago and they both came back negative. 

They said my liver looked a little fatty and somewhat enlarged on the CT, but just attributed it to being overweight and not eating the best. 

I've been struggling with my weight between the PCOS and insulin resistance, and feeling too sick to exercise (though I do anyway a lot of the time, even if it's just a walk). I don't eat very much usually because it's just easier not to, and that may be why I just keep gaining weight - my body might be in starvation mode, though I've been doing a little better on the lomotil and started eating more during the day at work. 

Hmmmm....

Maybe follow up on the possibility of interstitial cystitis (inflammatory process in the bladder). Do you urinate a lot?  

Fatty liver can certainly cause some pain in that area if it is being pushed or touching other organs.

Air bubble in bile duct? How did they "see" this? Do you have the original imaging to bring along to a specialist if needed?

And no one has mentioned an autoimmune liver disease which may affect the liver and/or ducts?

Have you had you inflammatory markers checked? I assume so. Sed rate, CRP.

[cyclinglady]

My niece tested negative for celiac disease.  A pill camera reveal Crohn's (where scopes could  not reach).  Just something to consider.  

[LaurainAZ]

1 hour ago, ironictruth said:

Hmmmm....

Maybe follow up on the possibility of interstitial cystitis (inflammatory process in the bladder). Do you urinate a lot?  

Fatty liver can certainly cause some pain in that area if it is being pushed or touching other organs.

Air bubble in bile duct? How did they "see" this? Do you have the original imaging to bring along to a specialist if needed?

And no one has mentioned an autoimmune liver disease which may affect the liver and/or ducts?

Have you had you inflammatory markers checked? I assume so. Sed rate, CRP.

The last GI specialist I saw said he uses pill cameras sometimes, and he told me we could do that if necessary, I'm not sure what that means exactly. I guess he's waiting to see what happens after I meet with other specialists, including endocrinology. 

They saw the air bubble on a CT Scan the first time I was hospitalized. I am in the process of having those records sent to my new doc as well. 

No one ever mentioned autoimmune liver disease - I didn't even know that was a thing, and I've been reading a lot about autoimmunity - wow. I'll have to look into that. 

 

[LaurainAZ]

I forgot to mention in my first post that I also get frequent infections. I actually get Shingles recurring constantly every few months, that's the most common one. But if a bug goes around the office I definitely get it and usually get hit hardest for the longest. The noro virus has taken me out a couple of times too, as well as gastroenteritis (if that's what it was and not just a flare of whatever this mystery problem I have is). I get common sinus infections and colds, etc. 

[ravenwoodglass]

48 minutes ago, LaurainAZ said:

 I actually get Shingles recurring constantly every few months,

Are the doctors sure it is shingles? The skin form of celiac, DH, is a painful burning insanely itchy rash. I have DH and it was misdiagnosed as various things from poison ivy to pickers acne to atopic dermatitis.  Didn't know it was DH till after I was diagnosed celiac and the lesions went away leaving behind their distinctive purple scars.  If it is shingles I do so feel for you as I had it recently and it is incredibly painful but not as itchy as DH.  Dh also will usually present bilaterally. If you have the rash on one arm it will be in the same place on the other, for example.

[ironictruth]

1 hour ago, LaurainAZ said:

The last GI specialist I saw said he uses pill cameras sometimes, and he told me we could do that if necessary, I'm not sure what that means exactly. I guess he's waiting to see what happens after I meet with other specialists, including endocrinology. 

They saw the air bubble on a CT Scan the first time I was hospitalized. I am in the process of having those records sent to my new doc as well. 

No one ever mentioned autoimmune liver disease - I didn't even know that was a thing, and I've been reading a lot about autoimmunity - wow. I'll have to look into that. 

 

Yeah, there are some associated liver related diseases which can attack bile ducts. 

Do not freak though! I am no doctor. Just a thought. 

And, make sure all STDs are ruled out. Totally random, but you never know. 

[LaurainAZ]

20 hours ago, ironictruth said:

Yeah, there are some associated liver related diseases which can attack bile ducts. 

Do not freak though! I am no doctor. Just a thought. 

And, make sure all STDs are ruled out. Totally random, but you never know. 

Yeah, I'm clear on the STD front lol - I've been married for a year and a half and we're both clean. They tested for it anyway when I was in the ER though, and it was all negative,