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Negative IBD Panel

My doc suspects I may have Crohn’s disease. I’m awaiting a double balloon enteroscopy for biopsy of Jejunum. My IBD Panel was negative. Does anyone else have confirmed Crohns with Negative IBD panel lab work?
 

my little penguin

Moderator
Staff member
Crohns is diagnosed based on imaging and biopsy results .
My child has been dx since age 7 for over 10 years and never had an ibd panel ordered yet .
Including multiple second opinions at top pediatric ibd university hospitals

have you had a colonoscopy?
MRE (mri with entrography ) ? Or cte (ct with entography)?
Capsule endoscopy?

what were those results ?
Fecal caloprotectin level ?
Bloodwork for inflammatory markers (crp,esr, CBC ,cmp )?
 
Crohns is diagnosed based on imaging and biopsy results .
My child has been dx since age 7 for over 10 years and never had an ibd panel ordered yet .
Including multiple second opinions at top pediatric ibd university hospitals

have you had a colonoscopy?
MRE (mri with entrography ) ? Or cte (ct with entography)?
Capsule endoscopy?

what were those results ?
Fecal caloprotectin level ?
Bloodwork for inflammatory markers (crp,esr, CBC ,cmp )?
I have had a colonoscopy, upper EGD, SBFT, Push Enteroscopy, CT scan, and CTE. The CTE shows 10cm segment of inflammation and thickening of Jejunum. The push enteroscopy couldn’t go deep enough due to edema- so being referred for balloon procedure for biopsy. Colonoscopy couldn’t view my ileum. My labs are showing inflammation on CBC, but the IBD panel is negative. My regular CT scan showed periportal edema of liver. I’ve been very ill since March 14th. Abdominal pain, intermittent partial obstructions, constipation, diarrhea, intermittent nausea and vomiting. Fever and body aches.
 
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Crohns is diagnosed based on imaging and biopsy results .
My child has been dx since age 7 for over 10 years and never had an ibd panel ordered yet .
Including multiple second opinions at top pediatric ibd university hospitals

have you had a colonoscopy?
MRE (mri with entrography ) ? Or cte (ct with entography)?
Capsule endoscopy?

what were those results ?
Fecal caloprotectin level ?
Bloodwork for inflammatory markers (crp,esr, CBC ,cmp )?
Perhaps the IBD panel isn’t always accurate. i surprisingly have not done a fecal cal.
 
Thank you so much!
No problem, I have a very mild case of crohns, so your mileage may vary. Even though the pill cam identified inflammation in a few spots, to this day I wonder if the crohns diagnosis was correct. But, either way, it doesn't matter. I adjusted my supplement intake and in general started to take a little bit better notice of my health. So, those are good things to do no matter what.
 
No problem, I have a very mild case of crohns, so your mileage may vary. Even though the pill cam identified inflammation in a few spots, to this day I wonder if the crohns diagnosis was correct. But, either way, it doesn't matter. I adjusted my supplement intake and in general started to take a little bit better notice of my health. So, those are good things to do no matter what.
I won’t hold ya to it. Lol I appreciate your response! That’s great that you are able to manage with supplements and lifestyle changes. I’m on a liquid diet right now. It’s been rough. Thanks again.
 

my little penguin

Moderator
Staff member
Liquid diet (blender foods ) or formula only diet ?
Formula only diet (exclusive enteral nutrition-een)
Is a treatment for crohns (heal the gut ) used a lot in kids for six to eight weeks (ensure ,peptamen, neocate jr etc…)
please be aware If you have been on formula only for a long time it could muddy the waters on biopsy results
 
Liquid diet (blender foods ) or formula only diet ?
Formula only diet (exclusive enteral nutrition-een)
Is a treatment for crohns (heal the gut ) used a lot in kids for six to eight weeks (ensure ,peptamen, neocate jr etc…)
please be aware If you have been on formula only for a long time it could muddy the waters on biopsy results
Liquid diet (not formula) because of a partial obstruction that was exacerbated by the attempted push enteroscopy. That is very helpful information to know bc we were considering TPN… I’m almost 5’8 and 95 pounds. I’m getting concerned about my weight; especially if I end up having a bowel resection. I’m praying I can avoid that, at least for the time being. I’m ready to be diagnosed. Thank you so much for your help and information!
 

my little penguin

Moderator
Staff member
Given your weight -and failed push endoscopy
Please get a second opinion with regard to bowel resection vs double ballon endoscopy.
Double ballon endoscopy has a high risk profile .
Having a good nutritional status at time of surgery is important for healing after surgery
Many on here have had surgery .
75% of kids dx with crohns (prior to biologics being used ) had surgery within 5 years of dx .
Tagging @crohnsinct
@pdx

outside of liquid diet
Are you on steriods to reduce any inflammation at the obstruction?
Ng tube ??
 
Given your weight -and failed push endoscopy
Please get a second opinion with regard to bowel resection vs double ballon endoscopy.
Double ballon endoscopy has a high risk profile .
Having a good nutritional status at time of surgery is important for healing after surgery
Many on here have had surgery .
75% of kids dx with crohns (prior to biologics being used ) had surgery within 5 years of dx .
Tagging @crohnsinct
@pdx

outside of liquid diet
Are you on steriods to reduce any inflammation at the obstruction?
Ng tube ??
I appreciate you so much. I am very ill and feel lost. I am very nervous to have the balloon procedure. I’m being referred to a teaching hospital here for the GI Dept to do my consult to potentially do the balloon procedure to get a biopsy of my Jejunum. If we decide against that, would the resection just be sent to pathology to confirm/rule out Crohns? I honestly feel like I will be hospitalized if I do the balloon procedure. I was in bad shape after the failed push endo for 2 weeks and I’m still paying for it physically. I’m trying to get weight on with protein drinks. I gained a few pounds up to 98, but it came right back down to 95. I am very uncomfortable being this thin. My appt for 3rd opinion is August 19th. I have not been put on steroids or any meds except Reglan, Phernergan, Hyosciamine, and omeprazole.
 

my little penguin

Moderator
Staff member
Does your new Gi know how thin you are ???
Please call them
Ask to be put on a wait list to be seen sooner
Ask for formula samples to try while your waiting
Even once you get an appt it could be a while until the procedure

Nestle nutrition store has complete nutrition

Abbott store also has complete nutrition
https://abbottstore.com/

Nutricia
Also has a store
Your GI can guide you on what is best for your situation

Refeeding syndrome can also be a concern
Due to low weight

can you ask your pcp for bloodwork cmp with electrolytes ?
Some have been seen sooner by going to the ER of the hospital where they have a Gi appt if things get bad

they should biopsy any tissue whether that’s scope or intestine removed .
 
Does your new Gi know how thin you are ???
Please call them
Ask to be put on a wait list to be seen sooner
Ask for formula samples to try while your waiting
Even once you get an appt it could be a while until the procedure

Nestle nutrition store has complete nutrition

Abbott store also has complete nutrition
https://abbottstore.com/

Nutricia
Also has a store
Your GI can guide you on what is best for your situation

Refeeding syndrome can also be a concern
Due to low weight

can you ask your pcp for bloodwork cmp with electrolytes ?
Some have been seen sooner by going to the ER of the hospital where they have a Gi appt if things get bad

they should biopsy any tissue whether that’s scope or intestine removed .
I believe my weight loss is documented on the referral paperwork my current GI sent them. I have only spoken to the scheduling dept for the new GI doc I’m being sent to. I’m on the waitlist currently. I will call my PCP and have them do an updated blood draw bc the last one was around 3 weeks ago, when I was seen at ER. I had blood in my urine at that time as well, nobody seems concerned except me. This has been traumatic. I homeschool my children and school is about to begin. I pray I can get help very soon. The ER here hasn’t been helpful in getting my appt moved up. I’ve been 2 times and all I get are IV fluids, zofran, and morphine. Thank you for all your help.
 

crohnsinct

Well-known member
You poor thing! This does not sound good what so ever. Here are my thoughts in no particular order.

Did you go to the E.R. of the teaching hospital? If not, perhaps if you presented there you would get further along with regard to diagnosis and treatment but if you do go to the E.R. be prepared to be admitted. Everything moves faster when admitted.

I can not believe you have been feeling unwell since March and you have not received any treatment and they are letting you waste away like this. My daughter who has Crohn's is also 5'8" and if her weight hits 110 they are freaking out. The thing with weight loss is the severe loss of weight leads to inflammatory burden. Then the inflammation makes you sicker and you lose more weight. It is a vicious cycle. I think you have the exact right idea with liquid nutrition and trying to keep your weight up but also agree that it might be time to get admitted and get TPN to start to turn things around a bit.

It is totally possible to have a negative IBD Panel and still have IBD, so much so that most docs don't use that panel to diagnose anymore.

Were they unable to get to the T.I. because the colon was so inflamed or the T.I.. I am assuming they biopsied the colon. What did those say? They really shouldn't have to wait for the jejunum biopsies to arrive at a dx, although if that is the only area that is inflamed maybe? Do they have plans for visualizing the T.I.?

At this point to help myself, I would try Exclusive Enteral Nutrition. It is different than blenderized food and readily available in most stores in the U.S.. You can use Boost or Ensure. These are the formulas that taste best but they are also the least broken down so about 20% of patients can't tolerate them and have to move to other formulas that you could still order but it is much more expensive. EEN is generally very effective at reducing inflammation, improving nutritional status and healing mucosa. I understand that some might be concerned that you might heal yourself too much that the next round of testing won't show anything but at this point you really need to do something for yourself. Plus, biopsies will show chronic inflammation even if you are able to heal but honestly, you likely won't heal that fast that the EEN will be a problem.

Refeeding syndrome does become an issue but there are guidelines. of when to worry about that, %age of weight loss over a specific amount of time (how much was your usual weight), BMI%age etc...I would be willing to bet you likely fall into this category so if you could get your current GI to monitor you for this while you wait for your appointment that would be good. I would also ask for a fecal calprotectin test so you go to the next doc with that already done and on't have to wait longer.

Hang in there! I will keep thinking on this and let you know if I think of anything else.
 

my little penguin

Moderator
Staff member
One thing to add
Your small intestine has to be healthy to absorb nutrients
Solid food is hard to absorb the body has to break it down
Polymeric formula (boost ,ensure etc) while easier than Whole Food still need to be broken down more by healthy intestine
Semi polymeric (peptamen) the chains are broken down more so a less healthy small intestine can absorb it

elemental formula (amino acid based -vionex ,neocate jr for younger kids etc..) only needs a few inches of Healthy intestine to absorb nutrients since the body breaks things down to amino acids and then gets rid of the waste
Elemental tastes the worst -most can’t drink it orally and need an ng tube
My kiddo was able to drink neocate jr chocolate at age 12 with lots of crushed ice and bribery
Nose plugging and straws to by pass taste buds

talk to your current Gi for een options while you wait ti get into third opinion Gi to get nutrition up
 
You poor thing! This does not sound good what so ever. Here are my thoughts in no particular order.

Did you go to the E.R. of the teaching hospital? If not, perhaps if you presented there you would get further along with regard to diagnosis and treatment but if you do go to the E.R. be prepared to be admitted. Everything moves faster when admitted.

I can not believe you have been feeling unwell since March and you have not received any treatment and they are letting you waste away like this. My daughter who has Crohn's is also 5'8" and if her weight hits 110 they are freaking out. The thing with weight loss is the severe loss of weight leads to inflammatory burden. Then the inflammation makes you sicker and you lose more weight. It is a vicious cycle. I think you have the exact right idea with liquid nutrition and trying to keep your weight up but also agree that it might be time to get admitted and get TPN to start to turn things around a bit.

It is totally possible to have a negative IBD Panel and still have IBD, so much so that most docs don't use that panel to diagnose anymore.

Were they unable to get to the T.I. because the colon was so inflamed or the T.I.. I am assuming they biopsied the colon. What did those say? They really shouldn't have to wait for the jejunum biopsies to arrive at a dx, although if that is the only area that is inflamed maybe? Do they have plans for visualizing the T.I.?

At this point to help myself, I would try Exclusive Enteral Nutrition. It is different than blenderized food and readily available in most stores in the U.S.. You can use Boost or Ensure. These are the formulas that taste best but they are also the least broken down so about 20% of patients can't tolerate them and have to move to other formulas that you could still order but it is much more expensive. EEN is generally very effective at reducing inflammation, improving nutritional status and healing mucosa. I understand that some might be concerned that you might heal yourself too much that the next round of testing won't show anything but at this point you really need to do something for yourself. Plus, biopsies will show chronic inflammation even if you are able to heal but honestly, you likely won't heal that fast that the EEN will be a problem.

Refeeding syndrome does become an issue but there are guidelines. of when to worry about that, %age of weight loss over a specific amount of time (how much was your usual weight), BMI%age etc...I would be willing to bet you likely fall into this category so if you could get your current GI to monitor you for this while you wait for your appointment that would be good. I would also ask for a fecal calprotectin test so you go to the next doc with that already done and on't have to wait longer.

Hang in there! I will keep thinking on this and let you know if I think of anything else.
Thank you so very much for your detailed reply! This is all such great information for me. I had a colonoscopy with no biopsies, no inflammation was visualized in colon; couldn’t access TI. My current GI wants to potentially try and visualize the TI on a repeat colonoscopy after my Jejunum is biopsied. The first colonoscopy was done 04/2021 with my 1st original GI doc. I had an upper EGD 04/2021 with biopsies. Slight inflammation seen in throat and stomach. Biopsies were negative. Diagnosed gastritis and GERD. The only thing showing on imaging is from a CTE; 10cm segment of proximal Jejunum with inflammation and thickening. I also have periportal edema of liver; seen on CT in ER. (I don’t drink alcohol and do not have hepatitis) I definitely have a lot of inflammation in my body. I feel like I’m being poisoned. Your explanation makes complete sense on the weight loss and inflammation. I have lost over 30 pounds since March. Im 35 yo. I haven’t been to the teaching hospital ER, bc it is further from my home- however, if it could get my appt moved up, I might be willing to try. If I wait until my appt at the teaching hospital GI clinic on the 19th, maybe they will admit me. It’s at a point where someone needs to take the lead and figure me out soon. I appreciate your input and knowledge so very much. I have never been this ill before in my entire life.
 
One thing to add
Your small intestine has to be healthy to absorb nutrients
Solid food is hard to absorb the body has to break it down
Polymeric formula (boost ,ensure etc) while easier than Whole Food still need to be broken down more by healthy intestine
Semi polymeric (peptamen) the chains are broken down more so a less healthy small intestine can absorb it

elemental formula (amino acid based -vionex ,neocate jr for younger kids etc..) only needs a few inches of Healthy intestine to absorb nutrients since the body breaks things down to amino acids and then gets rid of the waste
Elemental tastes the worst -most can’t drink it orally and need an ng tube
My kiddo was able to drink neocate jr chocolate at age 12 with lots of crushed ice and bribery
Nose plugging and straws to by pass taste buds

talk to your current Gi for een options while you wait ti get into third opinion Gi to get nutrition up
Thank you so much! I had no idea that the formulas worked like that. Very interesting and good to know. I am hoping to get this weight up some. I will definitely call my GI doc about this. Y’all are so wonderful! Thanks again.
 
I'm so sorry that you're having such a hard time getting a diagnosis and effective treatment. I don't have a lot to add to what the others have already said, except to agree that my daughter (with Crohn's) has never had an IBD panel done. She did have high inflammatory markers (ESR and CRP) before she was diagnosed, and that led to a fecal calprotectin test, which also came back high. I would definitely ask to have a fecal calprotectin test done, and formula is a good idea too. Hope you get some answers soon.
 
I'm so sorry that you're having such a hard time getting a diagnosis and effective treatment. I don't have a lot to add to what the others have already said, except to agree that my daughter (with Crohn's) has never had an IBD panel done. She did have high inflammatory markers (ESR and CRP) before she was diagnosed, and that led to a fecal calprotectin test, which also came back high. I would definitely ask to have a fecal calprotectin test done, and formula is a good idea too. Hope you get some answers soon.
Thank you so much! Surprisingly nobody has done a Sed rate or CRP. Or the fecal cal. I will specifically request these. I wonder if my PCP can order the fecal cal. He is willing to draw whatever labs I typically request. I don’t know if insurance lets PCPs order that test. I’m not familiar with fecal cal very much. I’ve had stool samples done, but that was for bacterial etc at the beginning of this illness.
 

crohnsinct

Well-known member
Yes, a pcp can order it and that’s a great idea. I would add CBC and CMP also. You could probably use some vitamin nutritional tests also but those aren’t as pressing.
 
Yes, a pcp can order it and that’s a great idea. I would add CBC and CMP also. You could probably use some vitamin nutritional tests also but those aren’t as pressing.
Thank you both so much! I made my appt for my testing with PCP for this next Monday. I will keep in touch once I know more. Yall are wonderful! God bless you!
 
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