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Farmwife

Farmwife

Joined
Apr 28, 2012
Messages
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This group if for the those who are battling the unique challenges of EGID and IBD.

A brief description of EGID's

What Is an Eosinophilic Disorder?

Eosinophilic enteropathy is a complicated digestive system disorder in which eosinophils, a type of white blood cell, are found in above-normal amounts in one or more specific places in the digestive system and/or the blood.

When the body wants to attack a substance, such as an allergy-triggering food or airborne allergen, eosinophils respond by moving into the area and releasing a variety of toxins. However, when the body produces too many eosinophils, they can cause chronic inflammation, resulting in tissue damage.

These rare diseases are diagnosed according to where the elevated levels of eosinophils are found:

Eosinophilic esophagitis (esophagus)EOE
Eosinophilic gastritis (stomach)EG
Eosinophilic enteritis (small intestine)EGE
Eosinophilic colitis (large intestine)EC
Hypereosinophilic syndrome (blood and any organ)
(Taken from CURED http://curedfoundation.org/site/what-is-ee/what-is-egid/ )

Other helpful forums for EGID is.....

Kids with food allergies (KFA)
http://community.kidswithfoodallergies.org/displayForum/forum/eosinophilic_disorders
Apfed
http://www.inspire.com/groups/eos-connections/discussions/?ref=as&asat=75073198

All are welcome to join and offer knowledge, support and encouragement.:hug:
 
Grace was dx'ed with Eos disease and Colitis. Crohn's or UC are yet to be determined.

We were shocked to hear the dx of Egid's.
Grace however has had issues since birth. I now feel she had EG/EGE/EC first and than IBD around her second birthday. We're still seeking answers to make sure both dx's are right.

The problem were running into is...what's what????:ybatty:
Her GI after finding microscopic inflammation on her biopsies, put her on EEN. After many weeks Grace went back to ill again. The GI than put her on Pred which has helped.
We were given the go ahead to add back 10% = 150 calories a day of food. We decided bananas because we felt their were safe but she had a horrible evening of pain. I think we have to pull those. :voodoo:I just don't know what to think? Is it IBD or Egid? So frustrating.

Grace is on an n-g tube and is using Splash as her EEN.

:hug:
 
Hi Farmwife, Thank you for making this group. I wanted to put my sons story on here as well. He is 12 and has had a lifelong issue with stomach pains, diarrhea, bloody stools and nausea. Last Sept he ended up in the ER. First we got a dx of EGE next came the dx of Crohns. We switched GI docs in Jan because our first doc could not get her stories straight. The new doc is really focused on the CD and getting his current flare under control. Here is what we have done so far:

Budesonide - no help at all for EGE
Prednisone - helped but no remission..last dose 2/18
Allergy testing - removed all allergens from diet, some relief
Elimination diet - all 8 removed, some relief
Pentasa - 1500mg 2x day does not seem to be helping (4 weeks now)
Specific Carb Diet trial - 3 weeks in an not helping so stopping

We are now starting 6-MP this Wed so will see if that helps. We see the nutritionist tomorrow to switch it up again to focus on the 6-MP working. His pain level lately is mostly 3-4 but has 7-8 days. We recently found pork is a trigger although he does not test allergic and it's supposedly good for CD but no for J.

Right now he is eating about 8 foods: homemade yogurt, baked pears, bananas, beef, chicken, cooked brocolli and carrots, potatos - and honey, salt, butter, olive oil, garlic

I'm pretty sure we will have to remove the yogurt which is a bummer because he loves it so much.

I will keep you all posted. For now going to focus on getting the CD under control via 6-MP, then tackle the EGE once we see how he feels. I feel like I can figure out the EGE triggers without the CD muddying the water.

Hugs to all of you because this is so frustrating trying to figure it all out!
 
Thanks for joining Gingermom.:hug:

I think that's a good plan the GI has. The IBD in my mind needs to be in remission before EGE can be sorted out.
Has he ever done EEN?
 
Just to update the EGID's side of things.

Grace is still struggling with joint pains and weakness.
I guess I'll have to get after the rheumy a bit more
. I was just hoping it would be done by now.

Grace has entered the asthma world....well, all the way now. :smile:
The allergist want's her on her nebulizer 4 times a day with different meds. BUMMER!
Up until now, she only needed the meds for sickness and allergy season.
But now that she has wheezing a lot more he wants her on it for the foreseeable future.

I guess the BIGGEST shock is Grace has a sulfite allergy. :confused2:
If you hadn't heard sulfite's are in EVERYTHING.

Also the allergist said pull the apple sauce. Today she will try boiled shredded chicken. YA!
 
Summary: A case of a child with Crohn’s disease who developed an eosinophilic gastroenteritis is reported.
Although symptoms of eosinophilic gastroenteritis at age 8 could mimic those of Crohn’s disease, laboratory,
radiographic and histologically studies are clearly different. Peripheral blood eosinophilia (7,476 cells per mm3),
high serum IgE level (1,050 kU/l) and normal C-reactive protein and erythrocyte sedimentation rate are common
in eosinophilic gastroenteritis and uncommon in Crohn's disease. Eosinophilic gastroenteritis was due to bovine
serum albumin (BSA) hypersensitivity, confirmed with skin tests, serum levels to specific IgE and a SDS-PAGE
IgE-immunoblotting. A strict meat-free diet was started, with progressive relief of symptoms and decrease of
eosinophil count twelve months later; the patient became fully symptom-free and eosinophil count was normal.
Click to expand...


Allergic eosinophilic gastroenteritis in
a child with Crohn’s disease
R. Tella1, P. Gaig1, M. Lombardero2, P. García-Ortega1, J. Bartra1,
M. Papo3, X. Batlle4

from

http://www.jiaci.org/issues/vol14issue02/11.pdf

ENJOY!!
 
:ghug:Thanks MLP. It's funny what we find a "good read".

Update.
Chicken going well.
She's great. Pain free and very happy.

Her GP gave us a script to get her a medical stroller.
Her pains in her legs are gone but her weakness is staying.
Her Rheumy think it's because of her Hyper motility (double jointed).
Thank God she should out grow this.

In the next few weeks Grace will get her g-tube. 3 days in the hospital.
This is new for us.:confused2:
I've struggled for years to keep her out of there and
now I'm OKing for her to go in there.

This just feels screwed up.:ybatty:

:ymad:Why is it when we want proceeder's they drag their feet
but when we want to drag our feet and think about it for awhile,
they rush it through.:yfaint:
 
Three weeks away - anything can happen. Jae was scheduled for her MICkey button on the 10th, but she seems to be transitioning to oral feeding this week and the GI gave the okay to continue trying to go totally oral again! You never know. You can process and hope, and if it is right for Grace, maybe the tide will turn in her favor before the 3 weeks have passed. If you do end up going for surgery, keep notes, maybe we'll need your advice down the road a bit.
 
Thanks Carolin

Grace needs the mickey button because of her EGID. It might be a year or two before we can build up a livable menu for her. Right now I feel the GI is happy with full EEN because he know as well as we that Grace MIGHT (only God knows) be a tricky case. Hey if EEN can keep her healthy and off of the bigger drugs until she gets older than I'm all for it.

Maybe that's the problem I'm having. :ymad:I MEAN COME ON.......I fought for years for ONE dx, not all this.:yfaint:

Still she's a lot better. I'm very happy right now. Now tomorrow might be different (leg pains started again):confused2:.
 
Hi farmwife
Lucy is going in for her mickey button
On the 15th April, aslong as all infection has
Cleared. I'm a bit nervious but I know she
Needs it and its the best thing for her x
When will grace get hers???
 
Mylittlesunshine

I found a good video on-line of how they do it. Press HERE

The apt. is the 19th and I was told they will have her in with in a week.

I'm still not sure how it will all go down. Still a lot to think about.

HUGS
 
MLS, Grace already has a Mickey. She might have to have other surgery. Let me know how Lucy's surgery goes. Mickey is our next step if Jae can't keep up orally...
 
We will be meeting on the 19th with the surgeon for consultation. The actual surgery will be the week after. HOWEVER......... we're rethinking that a bit.:yrolleyes: Might hold out for awhile longer. :yfaint:Sorry not enough time to explain. Hugs to all:ghug:
 
Well I have a few minutes to update the eos side of things.

Grace had her g-tube placed a week ago.
We've tried to find safe foods but have found a lot more failures.
The allergist has also dx'ed her with a Sulfite sensitivity and Fructose Sensitive.

Sooooooo even if it was safe for her, she might not be able to eat it.
Her GI acts if Grace will be formula feed for quite sometime.:confused2:
We meet with the GI in a month or two and will discuss her next scope.

Still she's happy and in remission (I think:yrolleyes:)
 
FW. Happy to hear your princess is feeling better and the g tube went well. Thoughts and prayers sent your way that she finds what agrees with her.
 
I have a question for parents dealing with both EGIDs and IBD, since IBD is a differential diagnosis of EGID on what basis are both diagnoses given (ie how do you know you're not "just" dealing with IBD as opposed to both)? Eosinophils in elevated numbers are common in IBD. My daughter has had some eos in her digestive tract in the past and her diagnosis is UC. None of the five GIs we've consulted is worried about them indicating anything other than IBD (UC). There were elevated amounts in her duodenum and she's had some duodenal inflammation in the past (yes, it's possible and even common with UC). Advice/thoughts? She's going to have surgery soon and I want to exclude anything and everything possible. Thanks!
 
Has her slides been read by EGid experts?

DS has EOS in biopsy slides per our local hospital
We had his slides re read by the egid experts at cchmc to determine IF egid was a factor as well.

For him it was not a factor

I would call cchmc EoE program to see if they would re read the slides .
 
One of her previous GIs was both an expert in EGID and IBD . He did not read the slides though just the biopsy report which stated the number found and where. He was not concerned at all. Is there a top number for IBD which if they exceed it becomes EGID? I may have them re-read but to be honest we are exhausted and broke having sought out many GI and surgical opinions (and I did have them stained and re-read for mast cells by a path who specializes in masto and IBD). I was just wondering if anyone had any general info or guidelines as to how they're distinguished from each other or any links they could direct me to?
Thanks for your help My Little Penguin. How did they determine the eos were not a factor for your son? Was it because of their number or ?
 
Well welcome to my life of trying to figure this out.
We went all the way to mayo clinic to have this very question
answered. In Grace's case she had elevated eos numbers through out
her track. Her colon was the highest. The confusing part is she showed
damage common with Ibd.

Ok, both the GI's (primary and second opinion) think she has probably suffered from some form of egid's since birth but now it's changing into full blown Ibd.
However mayo believes she's already there.
Her GI said that true eosinophlic disease of the colon has numbers in hundreds.
Grace was about seventy.
Also they feel that people with elevated eos and IBD might have
a allergic response to their disease. It's interesting how some swear by diet to control disease but yet for others it makes no difference. I always want to askif they had elevated eos in there biopsy.

As far as being dx with both. She has elevated eos, so GI said egid's but since she had symptoms and chronic and acute damage found in IBD, he said early on-set of Crohn's.
However her IBD is considered more of a secondary dx until scopes finds more visual damage.:ymad: I hope they never do!!!!!!!!!
 
Thanks Farmwife. I have read that elevated eos can be a precurser or early sign of iBD. IS that what your GI meant (that her eosinophiles actually are due to CD which is becoming more apparent?) And so she doesn't have both? My daughter definitely has IBD. It's a sure thing (UC and hoping against hope that it doesn't become CD because she will have her colon removed soon). But just trying to exclude anything additional before surgery.
 
However, theirs always a HOWEVER, her GI's said that EGID's no longer seem to matter for Grace, that IBD is at work now. How and why, I have no idea.
 
The pathologists at cchmc who look at egid kids all day did not find any EOS on the re read of the slides . I had a few papers on both since it fit DS but
No EOS means no egid .

Cchmc did tell us that some kiddos have both which is rare.
Above a certain number I believe .
Our Gi thinks lower egid is really just early crohn's or uc that science hasn't caught up with yet .

- I understand that having some eosinophils in the colon is normal? Regarding an "accurate diagnosis," are there cutoff numbers for eosinophilic colitis (EC)? Do those numbers differ depending on which side of the colon? If so, why?
We have examined the amount and location of eosinophils in the colon in a limited set of healthy normal patients (Debrosse et al. Pediatr Dev Pathol. 2006) and found that the average number of eosinophils in the ascending and transverse colon were not significantly different. The peak eosinophil count was 50 eosinophils/high-powered field in the ascending colon and 42 eosinophils/high-powered field in the transverse colon. However, an exact cut-off of eosinophil levels for a diagnosis for eosinophilic colitis (EC) is not yet agreed upon.
- What about the eosinophil number for the cecum and the ileum in eosinophilic colitis (EC)? These areas are very exact. I cannot get an average number for these areas from any doctor but did read a published report online that states that eosinophils over 30 in the cecum is a high indicator of EC.
We have examined the amount and location of eosinophils in the colon in a limited set of patients (Debrosse et al. Pediatr Dev Pathol. 2006). The peak counts were obtained from samples containing biopsies from both the cecum and ascending colon (50 eosinophils/high-powered field) and from samples containing biopsies from both the transverse and descending colon (42 eosinophils/high-powered field). The peak count for samples containing biopsies from the ileum only was 28 eosinophils/high-powered field. Still, there is not consensus for an exact cut-off number for any of those sites; all biopsy findings must be correlated with clinical findings.
Click to expand...


From:
http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/patients/faq/

That should help
 
I was told and read a paper where lower egid's might be considered a new
form of IBD someday.

Sorry I had some paper describing the pathological differences between the two but that was my old laptop the got ruined when someone spilled water on it.:eek:
I can't find it know.
But it wasn't too reveling. Still look like early IBD.
 
Is there a "better" diagnosis? EGID or IBD? Specifically is IBD more severe than EGID? Is there a spectrum? Trying to understand where my little guy fits. I feel like I have more questions than answers...3 days ago I thought his system just got out of whack from too much dairy and now my head spins with millions of questions.
 
Eoe I guess is better..........in a way. Once you find the triggers the damage will stop. However finding them might take awhile. Plus, triggers might grow in number and now they say that outdoor allergies may play a factor. :yfaint:
There are different protocols for treating eoe.
Like I pm you. Doctors are still trying to come up with a protocol for treating egid's.
 
New here. My son was DX'ed with EE in 2009 then it changed to EGE in 2011 and now after finding microscopic granulomas in his colon last year they gave him a Crohn's diagnosis as well. Talk about confusing!! It's been a long road and DS is now 17 with only rice, canned pears and elecare for his diet. He is on swallowed Flovent, Entocourt, remicade , xyzal for allergies, and Pepcid. He drinks formula as he is opposed to a G-tube. We are about to food trial something in hopes of adding something back into his diet. I feel like everything we do is a stab in the dark as doctors don't really know what to do. Glad to find a few people that know what we are dealing with.
 
Yes confusing and mystifying is the words my doctors have used to describe the connections between IBD and EGE. My Grace has been told to just stay top eight free plus corn and beef.
She also survives on formula. They think her IBD is playing a bigger part. I'm still confused and wish our kids weren't writing the medical papers on this.

Hugs

If you have time. Do you remember where in his track the eos showed up and the numbers?
I'm trying to get a general idea of the amount of eos associated with the cross world of Ege and Ibd.:yfaint:
 
I'm 18, and I was diagnosed with EGE a little over 2 years ago. It has always presented itself with pretty bad abdominal pain (right lower quadrant), diarrhea/constipation, nausea and vomiting, etc. Recently I've started to flare really bad (last flare was about 6 months ago), with way worse symptoms (weeks of constant vomiting, pain off the charts), and I've been wondering to myself whether it may have developed into something else (which may be silly, but I'm not sure).

My EGE developed in the duodenum first, them rectum if that helps.

Are EGIDs often a precursor to an IBD? You guys seem like you'd know more than the people viewing this same post in the general discussion forum.

I can answer any questions you have. Tell me if I'm horribly overreacting. I just need this to get better soon, seeing as I have to graduate and go off to college soon...

Thank you in advance! And sorry I'm not a parent....
 
Last edited:
Hi and welcome,

It's perfectly fine to be posting on the parents forum. Most that deal with EoE/EgE are kids on here which is why it's on the parents forum.

Ok some question
How were dx?
What were All your syptoms?
How many eos per area in your track? Also, what changes was/were noted (damage due to inflammation) This info should be on the biopsied results.
What foods have you cut?

If you've read on my Grace she's a complicated situation. We went to the Mayo Clinic and talk to the GI about that very question, can EgE turn into IBD. Her answer was YES.
The sad part for you, Grace and others is they still don't know that much about EGE. So it's not understood what can happen down the road. The Mayo GI did see their starting to see a link with Thyroid disease and EGE.

I'll check in later.
 
I was diagnosed with a colonoscopy and EGD.

All of the symptoms I can think of:
-anywhere from moderate to severe abdominal pain
-blood in stool (bright red, not black)
-mucous in stool
-joint pain (hips especially)
-nausea and vomiting
-first flare I lost like 20 pounds (over a few months)
-alternating constipation (1 partial bowel obstruction)/diarrhea

The last time I had a scope done was over year ago, and my parents got the results, and probably don't have them anymore. So I'm not sure about any of that information. I don't know if they ever put people on steroids for EGE, but if they do, my inflammation wasn't bad enough to require that at the time (if that's at all helpful).

I'm a vegetarian, so I don't eat meat or seafood, and very little dairy. I've always gotten better before they've considered an elimination diet, so that's about as much as I can tell you.
 
Thanks for the reply.
Just a suggestion, since your eighteen start asking to look at the copies of reports. You would be amazed what you can teach yourself about your own situation. I'm already telling Grace medical stuff (age appropriate) so she can start to understand a bit better. Of course don't leave your dear parents out of the loop.:smile: STUDY, STUDY AND MORE STUDY about what you have.

One thing I'm learning in my daughter's case is, time will tell. GRACE is what's considered the in between worlds of IBD and ege. She has a bit of both is basically what I've been lead to believe.

Have you had your labs done recently? Keeping tract of your vitamins levels can tell a lot about your health.

Remember with EgE you can get new food allergies at any age. Once your eosinophils decide to start attacking a food that's it. No going back on there end. But if you think you might be dealing with IBD you have a new set of problems. :yfaint:Some IBD'er can't handle raw veggies. It tares up their track. Plus if you have stomach involvement you have to think about easier to digest foods. Just food for thought.

My best advice, keep on the doctors. If you have symptoms report them and try to find a plan to help you. EgE is not mild, it can and will cause damage if left untreated. Eoe is the more well known disease out of egid's family. Your not dealing with that, so keep reminding your docs of that.

Last but not least, I've read a couple medical studies and heard from one doc that EgE in the future might be declared a type of......you guessed it, IBD. But until then we must keep pushing and researching to find answers.

Oh I have more to write but I don't what to bore or overwhelm you.:ylol:
 

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