Do any of my symptoms point to Crohn's?

[naturegirl]

Hello all :sign0144:

This seems like a wonderfully supportive forum. It is reassuring that this kind of place exists, as there are moments where I admit to feeling a bit despairing that I will one day feel better. I have a number of health issues and few answers as to what is going on. But I am committed to getting to the source of my issues and finding ways to resolve or manage them. And, I have also had some 'successes' with certain symptoms.:ysmile:

I have been experiencing some unexplained symptoms all my life and then a 'collection' of symptoms that come and go in what I call episodes these past 3 years. This began 2 days after I had the Mirena (hormonal IUD) put in (due to this, I got it removed 6 months after insertion). Not sure if it is just a coincidence.

I've been to several doctors, had multiple tests (blood-work, stool testing, saliva testing, colonoscopy...), been off gluten for 3 years, tried a variety of different alternative supplements but unfortunately I am still without answers and most symptoms seem to be getting worse.

I have no idea whether I have Crohn's (or a related disorder) but would love to get your input, from your own experiences, as to whether any of my story points one way or the other. So that I can either 'rule it out' or get more diagnostic testing done. Sorry this is SOOO long but wanted to give all the info!!! :boring:

Issues since childhood:
Digestive issues (flatulence, bloating, painful cramps, alternating C & D...). I was always very skinny (though tall) even though I ate a LOT! I had a lot of colds, chest and ear infections (burst ear-drums...) which completely resolved once I stopped consuming dairy. :thumright: Mouth ulcers. Serious gynecological issues (vaginal/anal fissures, irritation, pain...) and frequent UTI's since around age 8. In recent years, UTI's were getting EXTREMELY frequent... but urologist just did a series of bladder instillations (heparin, antibiotic, lidocaine, sodium bi-carb...) and it has been life-changing... as these are now much less frequent! :dance:

Colonoscopy (2010):
Gastroenterologist found more than 30 polyps (I was 31 years old at the time). Luckily, biopsy found that none were cancerous or precancerous (all hyperplastic). He removed most of them and I am to do another one 5 years after initial one. He did not observe anything else 'of significance'. Does this rule out Crohn's? My intestines were not 'clean' despite following all pre-procedure instructions - indicating that my digestion was 'slow'. Again, I'm guessing that this also points to Crohn's being unlikely. Right?

Increased digestive issues since arriving in USA (2007): When I first moved to America (from Europe) my digestive symptoms got much worse. I had D (like water) over 10x/day for around 8 months. I also continued to experience cramping, bloating, flatulence, nausea... However, this vastly improved when I went on a gluten-free, casein-free diet. Now the 'baseline' of my digestive system is much, much better. I still have issues but only when I'm experiencing the 'episodes' described below.

The one thing that has not resolved and started at this time is a painful swollen area in the lower right quadrant of my belly. I notice it most when I'm lying down and when my stomach is relatively empty. It didn't used to feel like that... and for the past 4 years, it is always there, aching a little, and swollen to the touch (told dr's but none deemed it to be something to worry about).

Episodes, from 2-4x/month since 2009 - severity and duration varies from one to 10 days, onset is sudden:

• Swollen abdomen
• Nausea (much worse at night and in morning) - Hypersensitive to smells
• Sometimes D followed by C
• Lack of appetite
• Swollen glands (in neck - near tonsils)
• Swollen lymph glands (groin, armpits, neck, knees...)
• Aching/stiff joints (hips, knees, elbows, small joints in fingers, toes...)
• Weakness
• Muscle aches
• Headache (tight band around top of head or on one side)
• 'Buzzing' sensation in head (not sound)
• Extreme fatigue - only option is to 'sleep it off'
• Brain fog
• Sense of despair/ cry easily - feels more physical than just a response to other symptoms
• Painful urination (as though urine itself is irritating)
• Sore throat
• Slightly hoarse voice
• Itchy acne like rash on forehead - like lots of tiny pimples beneath the skin (nowhere else - usually appears after other symptoms have subsided)
• Dry/gritty eyes
• Photosensitivity (hurts eyes to drive at night, makes nausea worse...)
• General malaise / feel like I'm getting the flu
• Chills and feel feverish at same time (prefer to be warm though)

Unusual test results (2012):
Total cholesterol: 107 Units
HDL: 37 Units
LDL: 57 mg/dL
Free cortisol: 3.9 ng/mL
Transcortin: 58 mg/mL
Low Zinc
(Diagnosed with uterine fibroids through ultrasound)

That's it!!! Thanks for reading!!!

 

[ThatsWhatSheSaid]

Ummm you sound like me! I was diagnosed with crohns in 2004. Although my current GI is not finding persuasive evidence that my current issues are from the crohns because the inflammation he saw a few weeks ago was mild. I'm at wits end even WITH a diagnosis, so I don't know about you!! I'm on a month of Prednisone that I started on Monday and symptoms are already improving....but it doesn't seem like any real relief because it isn't a long term plan for good health, you know?

Have you been on Prednisone before? May sound like a weird suggestion, but if you go on it and it helps the indication is that there is an issue with the immune system. That may do something to help the doctors figure out what tests to run or at least get a better idea of what you're/they're dealing with.

Eh. We are the lucky ones, right?!?!

 

[Gculk]

Get an endoscopy, asap to get a solid answer on celiac. Could be celiac + crohn's, or just celiac.

I think celiac is a definite. You had the lactose intolerance typical of long-term celiac damage, and you improved on removal of gluten from diet.

The episodes sound very auto-immune. Very likely could be crohn's.

Another thing that sticks out to me is adrenal insufficiency. Most of your symptoms line up with adrenal insufficiency. Not perfect, but could fit if you push a bit, especially once you add in celiac.

Final word - get them to do an endoscopy, not a colonoscopy, the other end, to look at your small intestine. At the very least it'll say yes or no to celiac for certain.

Best of luck, and feel better
Nathan

 

[naturegirl]

Ummm you sound like me! I was diagnosed with crohns in 2004. Although my current GI is not finding persuasive evidence that my current issues are from the crohns because the inflammation he saw a few weeks ago was mild. I'm at wits end even WITH a diagnosis, so I don't know about you!! I'm on a month of Prednisone that I started on Monday and symptoms are already improving....but it doesn't seem like any real relief because it isn't a long term plan for good health, you know?

Have you been on Prednisone before? May sound like a weird suggestion, but if you go on it and it helps the indication is that there is an issue with the immune system. That may do something to help the doctors figure out what tests to run or at least get a better idea of what you're/they're dealing with.

Eh. We are the lucky ones, right?!?!

Thanks so much for sharing. So sorry to hear that you're going through all that even with the Crohn's diagnosis... Had you had any relief from your symptoms compared to 2004 (related to the dr observing less inflammation)? Or is it more that what they are able to observe does not match the symptoms you are experiencing. If you're open to it, I'd be interested to hear exactly which symptoms match (maybe via PM - bit new to how it all works!).

That's interesting about trying the Prednisone as an approach to initial 'diagnosis'. I can see why it would be difficult to take long-term as it sounds like a strong medication... I'm a bit 'super-sensitive' to med's, as are most of my family, so I'm hesitant to try it. Have you experienced any of the side-effects taking it short-term? Great that you've had some relief with it so quickly though...

Take care and good luck...

 

[ams]

HI, there. I am a newbie here with celiac, but I think for sure you should rule out celiac. The issue here is that you have been on a GF diet and it can change results to a false negative....so you would want to mention that you have been on a gf diet to your dr.

I am being tested for chrons now too....I feel your pain. Hang in there and don't give up. You can try a blood test to check for inflammation from Promethius. Do some research so you don't get the run around from the doctors.

 

[kiny]

A biopsy through a colonoscopy and a CRP blood test is the standard to see if you have crohn or not. Anything else is kinda like throwing darts blindfolded, no one can tell from those symptoms if you have crohn or not.

 

[naturegirl]

Get an endoscopy, asap to get a solid answer on celiac. Could be celiac + crohn's, or just celiac.

I think celiac is a definite. You had the lactose intolerance typical of long-term celiac damage, and you improved on removal of gluten from diet.

The episodes sound very auto-immune. Very likely could be crohn's.

Another thing that sticks out to me is adrenal insufficiency. Most of your symptoms line up with adrenal insufficiency. Not perfect, but could fit if you push a bit, especially once you add in celiac.

Final word - get them to do an endoscopy, not a colonoscopy, the other end, to look at your small intestine. At the very least it'll say yes or no to celiac for certain.

Best of luck, and feel better
Nathan

Thanks a lot Nathan. That is helpful. Yes, I do suspect celiac but am not 100% certain. I got tested through Enterolab (whose results are controversial) and came up as gluten intolerant and genetically predisposed to gluten intolerance (although not celiac). However, my dr says that it is more of a 'spectrum' between gluten intolerance and celiac than the literature often describes.

I think that I may be intolerant to casein rather than lactose (I was recently tested for lactose and it is not problematic for me) but I think also is very frequently connected with celiac.

It is somehow helpful to know that the episodes sound 'autoimmune'... just because that is what I was guessing and it sort of makes me feel that I am not crazy and I can understand them more rationally. Don't get me wrong, I deeply hope not to have an autoimmune disease but seeing as I'm having all the symptoms, it is helpful to have a context to understand what is going on.

I think that you're right about the adrenal insufficiency (which fits with the low cortisol in my blood-tests (and low cholesterol) levels even though I've been taking Isocort. Does adrenal insufficiency frequently occur with Crohn's?

I'll definitely get an endoscopy... Do you think that 'diagnostic signs' (such as damaged villi, intestinal inflammation...) of Celiac or Crohn's are likely to show even though I've been off gluten for 3 years? I'll still do it, just so that I can obtain more information.

When Celiac and Crohn's co-exist can the gluten-free diet help with the Crohn's symptoms too (I know a lot more about Celiac than I do about Crohn's).

Thanks again.

 

[naturegirl]

HI, there. I am a newbie here with celiac, but I think for sure you should rule out celiac. The issue here is that you have been on a GF diet and it can change results to a false negative....so you would want to mention that you have been on a gf diet to your dr.

I am being tested for chrons now too....I feel your pain. Hang in there and don't give up. You can try a blood test to check for inflammation from Promethius. Do some research so you don't get the run around from the doctors.

Yes, my impression is that it is 'too late' to get a clear Celiac diagnosis without eating gluten again for several months (either through blood-work or endoscopy)... but I will get an endoscopy anyway to see if that brings any answers. I did do the tests with Enterolab (that seem to have a few in common with Prometheus) in 2009 and these were my results. I was already gluten-low and dairy-low then:
Anti-gliadin IgA: 18 - Anti-tissue Transglutaminase IgA: 13 - Fecal Fat Score: 558 Units - 2x HLA-DQB1*0202

I'll look into the Prometheus testing - so that is more to check for the Crohn's related inflammation, right?

Thanks a lot and good luck with your own diagnosis. I hope that you find some answers soon...

 

[naturegirl]

A biopsy through a colonoscopy and a CRP blood test is the standard to see if you have crohn or not. Anything else is kinda like throwing darts blindfolded, no one can tell from those symptoms if you have crohn or not.

I will definitely look into the CRP blood test. I do not think that I have done that one to date. Do you think that if I had a colonoscopy during which 30 polyps were removed and biopsied, without finding Crohn's that means I can rule out Crohn's? Or can it affect only part of the intestine, so that for example if it were present in the Ileum (where I have some pain), it can be missed?

Thanks a lot for you your help.

 

[kiny]

I will definitely look into the CRP blood test. I do not think that I have done that one to date. Do you think that if I had a colonoscopy during which 30 polyps were removed and biopsied, without finding Crohn's that means I can rule out Crohn's? Or can it affect only part of the intestine, so that for example if it were present in the Ileum (where I have some pain), it can be missed?

Thanks a lot for you your help.

Crohn can be anywhere really, but it tends to be in the small intestine for most, especially the terminal ileum (for reasons unknown). With a colonoscopy they can see where the mucosa is inflamed, that's where they take a biopsy, and they check for markers of crohn. The CRP test checks inflammation.

I can't tell you if it should have ruled out anything really, they should know if they had to check for crohn if you have it or not with a biopsy, assuming they were checking for crohn.

Another test would be an MRI, but a biopsy is usually preferred, still an MRI can show a lot too.

 

[naturegirl]

Crohn can be anywhere really, but it tends to be in the small intestine for most, especially the terminal ileum (for reasons unknown). With a colonoscopy they can see where the mucosa is inflamed, that's where they take a biopsy, and they check for markers of crohn. The CRP test checks inflammation.

I can't tell you if it should have ruled out anything really, they should know if they had to check for crohn if you have it or not with a biopsy, assuming they were checking for crohn.

Another test would be an MRI, but a biopsy is usually preferred, still an MRI can show a lot too.

Good to know... I am almost certain that he did check for Crohn's on the biopsies that he took during the colonoscopy. I feel that my anatomical knowledge is a little lacking, so I just want to make sure I have this straight... :blush: A colonoscopy examines the large intestine and the beginning of the ileum ('lower end')? An upper endoscopy examines the beginning of the small intestine (as well as the esophagus and stomach). The only way to observe the whole small intestine is to do a capsule endoscopy (which means no biopsy).

Good to know about the MRI option too...

Thanks again!

 

[kiny]

That's right. A gastroenterologist with some experience can feel with his hands where the big and smaller colon is (assuming the patient isn't super fat lol), based on that and on information the patient gives them, they tend to know where the inflammation is located. If the pain is coming from the lower right side next to the upper edge of the pelvis bone it is likely pain from the terminal ileum.

An MRI can't do a biopsy nor check the mucosa with a camera, but it is far superior to see what and where the inflammation is, it's also far less invasive for the patient. Once a biopsy is done once, many patients are now followed up with MRI instead of colonoscopies, because it's far less invasive, and for follow ups an MRI is superior in a few ways.

 

[naturegirl]

That's right. A gastroenterologist with some experience can feel with his hands where the big and smaller colon is (assuming the patient isn't super fat lol), based on that and on information the patient gives them, they tend to know where the inflammation is located. If the pain is coming from the lower right side next to the upper edge of the pelvis bone it is likely pain from the terminal ileum.

An MRI can't do a biopsy nor check the mucosa with a camera, but it is far superior to see what and where the inflammation is, it's also far less invasive for the patient. Once a biopsy is done once, many patients are now followed up with MRI instead of colonoscopies, because it's far less invasive, and for follow ups with an MRI is superior in a few ways.

That's funny... I think that they should be able to tell on me, as long as I don't overdo the Belgian chocolate and butter! I've asked a couple of doctors (not gastroenterologists, though) and they said that where I have the pain is around my ileo-cecal valve. It is also where you describe the terminal ileum to be.

I'm actually British (free NHS) and have health insurance in Belgium (but live in Colorado where I do not have health insurance...) so I may see whether I can schedule to see a gastroenterologist and get an endoscopy and an MRI (or maybe just one to start with...) whilst I'm over there. As from what I understand it will be extremely expensive to do anything like this here...

 

[kiny]

I live in Belgium, an MRI here isn't given normally, the standard precedure is still colonoscopy but I went through hell and back with this disease, was in a coma for a few hours in ER as a result of thinking I could handle this disease without any help, so they managed to make room for an MRI for me. Much better now.

Belgium chocolate is nice but I stopped eating it, your whole outlook on food tends to change with crohn.

 

[ThatsWhatSheSaid]

Colonoscopy only goes past the colon a little bit. I was diagnosed by biopsies etc. However, I have read about a lot of people having normal CRP levels despite being in a flare. You should be aware that having heightened CRP levels does not mean a definite diagnosis either- rather it gauges inflammation in your system. If you know you have crohns, heightened CRP can signal a flare, but many other diseases and illnesses can cause a heightened CRP. That's why I suggested trying a medicine known to help auto-immune issues since they are having issues with diagnosis for you. The prednisone basically knocks your immune system on its ass. If you feel better when your immune system is knocked down, there's an issue with the functioning of your immune system. And that may lead the doctors to explore other auto-immune diseases as well, such as Lupus etc.

Crohns can affect anything from the mouth to the anus, and a colonoscopy only looks at the tail end of all of that. When I was diagnosed I had about 50 bleeding ulcers in my colon. A year ago my colon looked okay but I had ulcers in my small intestine. It's a pretty unruly and unpredictable disease with little to go off of as 'hard and fast rules'.

I was actually in decent shape for a while after diagnosis- the Meds helped a ton. It's more as of late that I am having issues and I think it's so bad because I'm experiencing so many extra-intestinal issues.

I don't have any side effects from the prednisone except feeling great. The worst was when a couple baby hairs on my upper lip got a smidge darker than before- but that went away when I stopped. The thing is you're obviously having issues that are going untreated, and if those issues are inflammation that leads to worse permanent damage. If your doctor isn't opposed to trying a course of the prednisone (based on your medical background of course), the worst case scenario is that you go off but know that the issue isn't auto-immune; or alternatively bad would be that it helps but at least you have a direction to go in, you know? It sounds like what they're doing hasn't shed any light. I'll message again when done workin or tomorrow sometime.

Big hugs.

 

[ThatsWhatSheSaid]

Some of that was redundant because being at work delayed me and I didn't see all of there other responses! Sorry!

 

[Gculk]

Woah! Three years off gluten. Yeah something else is on the go even if celiac is an issue. No, at that point, unless you had severe celiac with scarring, you won't show on biopsy (must likely) without a gluten challenge.

Also, the blood tests for celiac are the poster child of why blood tests aren't everything. 10% false negative rate becomes alot of people that have false negatives.

Yeah definitely get something else checked. Adrenal insufficiency can occur in lots of auto-immune diseases, or even just coming off of steroids.

Where you've been off gluten so long it'd probably be better to start with a small bowel followthrough rather than an endoscopy, less prep, less hoo-ha, and they see more of your intestine. That should give a good indication of Crohn's or not, and if no answer continue on to pill cam or enteroscope.

I know how you mean, it's a relief to hear someone say 'hey, sounds like you're not bonkers'. Can't wait till I hear that finally!

The rash on your forehead also points to something physical, rather than ibs or whatever.

Also, about your repeated question 'does this rule out Crohn's'? The correct answer is NOTHING rules out Crohn's. It is notoriously hard to diagnose, and some people here have had clean scopes/biopsies one time, then diagnosed after that, and even some have had clean scopes after being diagnosed for a time. That said, don't get fixated on Crohn's. It could be any of a great number of auto-immune diseases, it could even be something that you can get rid of (I'm hopin for ya!). Just keep at it. Something's not quite right there.

Best of luck
Nathan

 

[David]

Hi naturegirl and welcome to the forum I'm so glad you joined and shared your story. I can only imagine how frustrating all this has been and my heart goes out to you. If the roles were reversed here is how I would rule out IBD (your symptoms point to it by the way):

1. I would ask for a pill cam (capsule endoscopy), small bowel follow through, or MRE to see what's going on in my small intestines. Where you state your pain and that lump is makes me suspect terminal ileum and based upon your not being clean during colonoscopy, I'd wonder how well they were able to view the TI if at all.

2. I'd ask for either [wiki]fecal calprotectin[/wiki] or [wiki]fecal lactoferrin[/wiki] to be tested.

3. I'd ask for my vitamin B12 and vitamin D levels to be tested.

If all of those are normal, considering what tests you've already had, I'd feel reasonably comfortable moving on to another cause.

We're here for you

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