Tests Come Back Normal, but Still Diagnosed with Crohn's. Is this normal?

[H0PEFUL]

Hey All,

New to the group here. My wife is the one who has Crohn's. I have often had many questions, but didn't know where to turn. I am excited I found this group and am eager to hear from others.

One thing I have always questioned is if Crohn's Disease is a misdiagnosis for her. She was on Humira for a year, then it lost its effectiveness. Then she went to Skyrizi, which was also effective for about a year. Once it became ineffective, the doctor increased her Skyrizi regimen, which you guessed it, was effective for about a year until it recently became ineffective. Now we sit her and wait until we can see her doctor and formulate a new game plan in about a month.

While we sit and wait, my wife is experiencing all the the terrible effects of Crohn's: Extreme fatigue, diarrhea, vomiting, abdominal pain, and psoriasis.

Even though she shows all the symptoms of Crohn's, her blood tests always come back normal never indicating inflammation. She has also undergone scope after scope after scope which have failed to find signs of inflammation. The only time inflammation was found was via a video capsule 5 years ago from her GI who diagnosed her with either small bowel or jejunal Crohn's. Her GI retired shortly after and referred her to her current doctor. Her current doctor has never seen signs of inflammation other than presumably reviewing the notes and video from her previous doctor.

Her doctors are great and we have the upmost confidence in them, but I don't think I'm alone when I say I sometimes wonder about misdiagnosis. There is no doubt she is experiencing symptoms similar to those of Crohn's but without much or any proof of inflammation, I wonder if there is something else that can cause these symptoms that we can explore.

I guess I'm just curious if anyone has any relatable experience or knowledge that they can share.

Thank you.

 

[my little penguin]

So if your wife’s inflammation showed on a pill cam (capsule endoscopy ) then the inflammation is in the small intestine.
A colonoscopy only really looks at a tiny tiny bit of the small intestine and the rest is the large intestine .
Colitis (Crohn’s colitis or ulcerative colitis ) stays in the large intestine .
Typical Crohn’s is in the small intestine and inflammation may be seen in the terminal illeum during scopes if the terminal illeum is affected .
Fecal caloprotectin is a stool test which picks up inflammation-primarily in the large intestine (higher numbers ) in the small intestine the increase can be smaller .
MRE is an mri with entography that can pick up thickening of the small intestine and is used with a pill cam (video endoscopy )
Blood work — some show inflammation in their bloodwork
Others do not .
My adult child has had crohns dx since age 7. Rarely is his bloodwork abnormal .
MRE picks up the thickening on the images for him .
In 14 years he has been on 3 biologics.
He increased humira every year for 5 years .
Stelara increased after 8 months to every 4 weeks at 90 mg.
He has been on that dose for 7 years .
He also takes methotrexate.
Finding the right med combo is hard .
No two cases of crohns are alike .
My kiddo has constipation instead of diarrhea most of the time when flaring .

Hope they find the increase in skyrizi helps .
Getting a second opinion can help as well as imaging .

 

[Pangolin]

I believe that inflammation only in the upper part of the small intestine is uncommon in Crohn's. Typically, there's inflammation at the end of the small intestine (the ileum).

It's possible that inflammation in the upper parts of the small intestine could be due to some kind of food intolerance, eg gluten. It also might just be Crohn's.

Maybe consider trying some elimination diets. If you can stand it, an all-formula diet (EEN) is known to help with Crohn's as well.

 

[Papantoine]

I can also relate. I have been sick with crohn’s symptoms since I was 3. Misdiagnosed until I was in my mid twenties and started bleeding. My colon was pretty straightforward, lots of inflammation leading to toxic megacolon and eventual full removal of the colon. Throughout all these ordeals, 14 surgeries my bloodwork almost always comes out better than normal. There have been a few times that my white count was up a bit, but generally my bloodwork doesn’t read like I’m sick at all.

Also, Crohn’s is a sneaky disease, I have had flares in my lungs, my eyes, my privates as well, and now it is primarily in my bones (permanent damage in my hands, feet and most of my bag, growing arthritis in my knees and hips) It’s in my blood and I run an increase risk of developing blood clots.

Flares carry with crohn’s but for me, it has only affected my small bowel a little bit. But then a last month it inflamed my entire small bowel, triggered by a section of bowel getting trapped in scar tissue and I am now recovering with difficulty from surgery #15.
(My blood work is still normal)

So yeah, I’ll beat it again. And so will your wife, your son, but Crohn’s is a sneaky crappy disease. Very unpredictable.

as some have said, if you fear misdiagnosis, getting a second or third opinion is a good idea. But normal bloodworks happen a lot.

 

[Papantoine]

*my bag= my back

 

[Papantoine]

(sorry, I don’t know how to edit these posts)
*flares vary with crohn’s

 

[happychristine]

Hey All,

New to the group here. My wife is the one who has Crohn's. I have often had many questions, but didn't know where to turn. I am excited I found this group and am eager to hear from others.

One thing I have always questioned is if Crohn's Disease is a misdiagnosis for her. She was on Humira for a year, then it lost its effectiveness. Then she went to Skyrizi, which was also effective for about a year. Once it became ineffective, the doctor increased her Skyrizi regimen, which you guessed it, was effective for about a year until it recently became ineffective. Now we sit her and wait until we can see her doctor and formulate a new game plan in about a month.

While we sit and wait, my wife is experiencing all the the terrible effects of Crohn's: Extreme fatigue, diarrhea, vomiting, abdominal pain, and psoriasis.

Even though she shows all the symptoms of Crohn's, her blood tests always come back normal never indicating inflammation. She has also undergone scope after scope after scope which have failed to find signs of inflammation. The only time inflammation was found was via a video capsule 5 years ago from her GI who diagnosed her with either small bowel or jejunal Crohn's. Her GI retired shortly after and referred her to her current doctor. Her current doctor has never seen signs of inflammation other than presumably reviewing the notes and video from her previous doctor.

Her doctors are great and we have the upmost confidence in them, but I don't think I'm alone when I say I sometimes wonder about misdiagnosis. There is no doubt she is experiencing symptoms similar to those of Crohn's but without much or any proof of inflammation, I wonder if there is something else that can cause these symptoms that we can explore.

I guess I'm just curious if anyone has any relatable experience or knowledge that they can share.

Thank you.

Try going Gluten Free! You can also ask the doc to test her for this. Had the same problem with diarrhea and the rest of it. My doc sugested this to me and when I went off ALL gluten I was find. And I am still to this day. Google DMSO, this stuff is amazing and will bring quick relief. One last thing, look up Listen To Your Gut. Very, very good info. I have had crohn's for over twenty years and I feel your pain. Please look into these things for they will bring you relief. Take Care christine

 

[Country Lady]

As fore mentioned this disease is tricky for everyone. It took me 2 years and a fight between a surgeon and GI, my GI was determined to find the diagnosis of Crohn’s. I went to an another hospital in Toronto. They confirmed it was Crohn’s! This was in my 30s, now 63. I’m happy to say I’m in remission with Entyvio finally after ever med on the planet, it works in the gut only. My sister has Crohn’s also but our symptoms are very different. As my motto is “treat the patient, not the disease “ no two people are alike. I tried holistic, gluten free, nothing helped. Trial and error helps. It’s also very common to have IBS which I have, diet is important for your body. Just found out over the holidays, oranges kill my gut. Had extreme pain. So it takes years to find your “diet “. Good luck in finding your wife help. Seek another hospital. You may get results!

 

[H0PEFUL]

So if your wife’s inflammation showed on a pill cam (capsule endoscopy ) then the inflammation is in the small intestine.
A colonoscopy only really looks at a tiny tiny bit of the small intestine and the rest is the large intestine .
Colitis (Crohn’s colitis or ulcerative colitis ) stays in the large intestine .
Typical Crohn’s is in the small intestine and inflammation may be seen in the terminal illeum during scopes if the terminal illeum is affected .
Fecal caloprotectin is a stool test which picks up inflammation-primarily in the large intestine (higher numbers ) in the small intestine the increase can be smaller .
MRE is an mri with entography that can pick up thickening of the small intestine and is used with a pill cam (video endoscopy )
Blood work — some show inflammation in their bloodwork
Others do not .
My adult child has had crohns dx since age 7. Rarely is his bloodwork abnormal .
MRE picks up the thickening on the images for him .
In 14 years he has been on 3 biologics.
He increased humira every year for 5 years .
Stelara increased after 8 months to every 4 weeks at 90 mg.
He has been on that dose for 7 years .
He also takes methotrexate.
Finding the right med combo is hard .
No two cases of crohns are alike .
My kiddo has constipation instead of diarrhea most of the time when flaring .

Hope they find the increase in skyrizi helps .
Getting a second opinion can help as well as imaging .

Thank you for the information. I hope your son finds and maintains relief!

 

[H0PEFUL]

I believe that inflammation only in the upper part of the small intestine is uncommon in Crohn's. Typically, there's inflammation at the end of the small intestine (the ileum).

It's possible that inflammation in the upper parts of the small intestine could be due to some kind of food intolerance, eg gluten. It also might just be Crohn's.

Maybe consider trying some elimination diets. If you can stand it, an all-formula diet (EEN) is known to help with Crohn's as well.

I appreciate the information! Like I said, I've always felt it was something other than Crohn's. I'm clearly not a medical professional, but just had a hunch or maybe I was just hopeful I could figure it out. From what I have read, it sounds more like Celiac Disease, a Wheat Allergy, or Gluten Intolerance.

Since my post and after reviewing these responses, we really looked at the food she was consuming. We discovered a product she eats daily has wheat and contains gluten, which we previously thought it had neither. We are hopeful that eliminating gluten and wheat will help. She also has a wheat allergy, so it makes sense that removing this product would help. Interestingly though, although she consumes this product daily, her symptoms are intermittent which seems odd for an allergy or intolerance, but I have since learned that it is possible. It's also odd because when she starts a new medication for Crohn's, it seems to alleviate her symptoms, but only for a few months. Not sure if that makes sense with an allergy or intolerance or not, but we will give it a shot!

 

[H0PEFUL]

I can also relate. I have been sick with crohn’s symptoms since I was 3. Misdiagnosed until I was in my mid twenties and started bleeding. My colon was pretty straightforward, lots of inflammation leading to toxic megacolon and eventual full removal of the colon. Throughout all these ordeals, 14 surgeries my bloodwork almost always comes out better than normal. There have been a few times that my white count was up a bit, but generally my bloodwork doesn’t read like I’m sick at all.

Also, Crohn’s is a sneaky disease, I have had flares in my lungs, my eyes, my privates as well, and now it is primarily in my bones (permanent damage in my hands, feet and most of my bag, growing arthritis in my knees and hips) It’s in my blood and I run an increase risk of developing blood clots.

Flares carry with crohn’s but for me, it has only affected my small bowel a little bit. But then a last month it inflamed my entire small bowel, triggered by a section of bowel getting trapped in scar tissue and I am now recovering with difficulty from surgery #15.
(My blood work is still normal)

So yeah, I’ll beat it again. And so will your wife, your son, but Crohn’s is a sneaky crappy disease. Very unpredictable.

as some have said, if you fear misdiagnosis, getting a second or third opinion is a good idea. But normal bloodworks happen a lot.

I appreciate the support. Keep fighting!

 

[H0PEFUL]

Try going Gluten Free! You can also ask the doc to test her for this. Had the same problem with diarrhea and the rest of it. My doc sugested this to me and when I went off ALL gluten I was find. And I am still to this day. Google DMSO, this stuff is amazing and will bring quick relief. One last thing, look up Listen To Your Gut. Very, very good info. I have had crohn's for over twenty years and I feel your pain. Please look into these things for they will bring you relief. Take Care christine

Thanks for the information! We thought she was gluten-free because she has a wheat allergy and we have been avoiding all wheat products. However, after your post and some of the others, we looked into the substitute we were using for wheat and discovered it actually contains wheat and gluten. She consumes this product daily. Yikes! We are hoping that eliminating this will help.

 

[H0PEFUL]

As fore mentioned this disease is tricky for everyone. It took me 2 years and a fight between a surgeon and GI, my GI was determined to find the diagnosis of Crohn’s. I went to an another hospital in Toronto. They confirmed it was Crohn’s! This was in my 30s, now 63. I’m happy to say I’m in remission with Entyvio finally after ever med on the planet, it works in the gut only. My sister has Crohn’s also but our symptoms are very different. As my motto is “treat the patient, not the disease “ no two people are alike. I tried holistic, gluten free, nothing helped. Trial and error helps. It’s also very common to have IBS which I have, diet is important for your body. Just found out over the holidays, oranges kill my gut. Had extreme pain. So it takes years to find your “diet “. Good luck in finding your wife help. Seek another hospital. You may get results!

Thank you for the information. Happy to hear about your successes as it is motivation for everyone still trying to find theirs! My wife has a ton of food allergies in addition to her Crohn's diagnosis, so it is very difficult to find the right diet as there isn't much she can eat presently. However, I think it is a good idea and something we should explore!

 

[emsays]

Hey All,

New to the group here. My wife is the one who has Crohn's. I have often had many questions, but didn't know where to turn. I am excited I found this group and am eager to hear from others.

One thing I have always questioned is if Crohn's Disease is a misdiagnosis for her. She was on Humira for a year, then it lost its effectiveness. Then she went to Skyrizi, which was also effective for about a year. Once it became ineffective, the doctor increased her Skyrizi regimen, which you guessed it, was effective for about a year until it recently became ineffective. Now we sit her and wait until we can see her doctor and formulate a new game plan in about a month.

While we sit and wait, my wife is experiencing all the the terrible effects of Crohn's: Extreme fatigue, diarrhea, vomiting, abdominal pain, and psoriasis.

Even though she shows all the symptoms of Crohn's, her blood tests always come back normal never indicating inflammation. She has also undergone scope after scope after scope which have failed to find signs of inflammation. The only time inflammation was found was via a video capsule 5 years ago from her GI who diagnosed her with either small bowel or jejunal Crohn's. Her GI retired shortly after and referred her to her current doctor. Her current doctor has never seen signs of inflammation other than presumably reviewing the notes and video from her previous doctor.

Her doctors are great and we have the upmost confidence in them, but I don't think I'm alone when I say I sometimes wonder about misdiagnosis. There is no doubt she is experiencing symptoms similar to those of Crohn's but without much or any proof of inflammation, I wonder if there is something else that can cause these symptoms that we can explore.

I guess I'm just curious if anyone has any relatable experience or knowledge that they can share.

Thank you.

Maybe her medications are reason for psoriasis? I experienced psoriasis with Remicade. I had been on Remicade for 5 years and within the 5th year the psoriasis was so wide spread it was difficult for topical steroids could keep it at bay. I switched over to Humira for 2 years and the psoriasis subsided but would periodically “bloom up” all over. This is when I switched over to Entyvio in 2015. The psoriasis completely stopped and never bloomed up again. No complaints with Entyvio.
Has your wife been tested for Cdiff or bacterial infections? I went through an episode with a bacterial infection and was prescribed Xifaxin. And recovered from symptoms of diarrhea nausea and fatigue.. was throwing up though.
Take care

 

[emsays]

Maybe her medications are reason for psoriasis? I experienced psoriasis with Remicade. I had been on Remicade for 5 years and within the 5th year the psoriasis was so wide spread it was difficult for topical steroids could keep it at bay. I switched over to Humira for 2 years and the psoriasis subsided but would periodically “bloom up” all over. This is when I switched over to Entyvio in 2015. The psoriasis completely stopped and never bloomed up again. No complaints with Entyvio.
Has your wife been tested for Cdiff or bacterial infections? I went through an episode with a bacterial infection and was prescribed Xifaxin. And recovered from symptoms of diarrhea nausea and fatigue.. wasn’t throwing up though.
Take care

 

[navesiZ9]

I can fully appreciate your feelings and empathise with you – it cannot be easy to stand by and watch your wife suffer this without getting some answers. It seems like her symptoms are very similar to Crohn’s, even though the exams do not reveal inflammation, and that is most certainly a challenging case. It is possible that other diseases can occur, similar to IBD, such as IBS and certain types of infections, so while you await a doctor’s appointment, consider other possibilities as well.

I’m glad you trust her doctors but if you are still in doubt, then it might not be bad in consulting with another doctor or researching other doctors that can give OMIT. In other cases, getting a new view can help you see the correlations between various issues.

 

[Andersen007]

Hey! I have Crohn’s in my small intestine too, but they did see some inflammation in my terminal ileum during colonoscopy and the biopsy they took. It is quite rare for Crohn’s not to affect the terminal ileum nor the colon, some would even say that should be called a separate disease altogether. Its also worth to make 100% sure that they are checking the terminal ileum and not just Crohns when doing colonoscopy.

In my case blood inflammation markers were never ever abnormal, in fact they stay at the lower end of normal. Calprotectin from stool however for me is very elevated even when my real inflammation is minor. MRE (a special type of MRI) did also show some mild thickening of terminal ileum due to inflammation in my case during diagnosis which helped reinforce the diagnosis of mild Crohn’s.

I also have celiac disease 15 years before I had Crohn’s. Now that one very commonly affects the jejunum and causes inflammation there and also similar symptoms to what you describe. Would be worth to check a) prior biopsy results from upper endoscopy in the duodenum as celiac disease shows in a quite specific way with increased IEL and damage of vilis. Often one or more of the many celiac disease antibodies from blood is abnormal too, but to diagnose celiac disease you need to make sure you are not on a gluten free diet before the tests. In my case celiac disease presented with pain, diarrhea, fatigue, delayed growth and other malabsorption issues like low hemoglobin, as well as severe skin symptoms.

Also, I have 2 people in my family who do not have celiac disease but had annoying symptoms, went gluten free, and have improved substantially. I think thats called non-celiac gluten sensitivity.