Eosinophilic Esophagitis

[jayhawkmom]

Anyone dealing with this, in addition to gluten issues??

It was originally believed that I'm dealing with GERD as a side effect of the gluten intolerance. But, I seem to be resistant to anti-reflux medication. Honestly, I knew I had reflux but had no idea it was as bad as it is, since I don't get heartburn or indigestion.

I do have chest pain, and difficulty swallowing... and food seems to get stuck on it's way down my esophagus. So, tomorrow I have to have more testing done... blood tests and a test requiring me to eat a barium covered marshmallow.

The two words in the subject title were mentioned to my husband, by my GI's nurse, when she called to give me the orders for the testing. She did not, however, mention them to me. Yet, when I look up this barium covered marshmallow procedure, I find a lot of information on the topic of eosinophilic esophagistis.

Anyone else dealing with this?? What are the types of treatment?? I've seen some suggestions of steroids, inhaled medications like Flovent, and addtional allergy medication. Goodness gracious... will it ever end?

[Mayster]

I also have it. In addition to Celiac, H Pylori and Gastritis. From what I've been told the Eosinophilic Esophagitis is an inflammation caused by allergies. Mine was from eating foods I was allergic to for an extended period of time without knowing it. It was confirmed by my endoscope. And my allergist told me what those foods were so I could avoid them. My treatment may differ from you since I have other issues but I'm taking Prevacid and a nasty med called the Helidac Pack that I need to take 4 times a day to heal everything. Let me know if you have other questions.

Anyone dealing with this, in addition to gluten issues??

It was originally believed that I'm dealing with GERD as a side effect of the gluten intolerance. But, I seem to be resistant to anti-reflux medication. Honestly, I knew I had reflux but had no idea it was as bad as it is, since I don't get heartburn or indigestion.

I do have chest pain, and difficulty swallowing... and food seems to get stuck on it's way down my esophagus. So, tomorrow I have to have more testing done... blood tests and a test requiring me to eat a barium covered marshmallow.

The two words in the subject title were mentioned to my husband, by my GI's nurse, when she called to give me the orders for the testing. She did not, however, mention them to me. Yet, when I look up this barium covered marshmallow procedure, I find a lot of information on the topic of eosinophilic esophagistis.

Anyone else dealing with this?? What are the types of treatment?? I've seen some suggestions of steroids, inhaled medications like Flovent, and addtional allergy medication. Goodness gracious... will it ever end?

[happygirl]

I am currently being tested for it. it can also occurs in the stomach, small intestine, and/or colon. the only way to correctly diagnose it is to have an endo and colonoscopy with multiple biopsies. the problem is, since it is food related, part of the treatment is to take food out-then you heal (that is how it is supposed to work, but doesn't always, plus, there are environmental issues). the treatment varies from person to person based on where it is located and the symptoms. you can have it because of food allergies AND/OR intolerances (not just allergies) or environmental issues. It can be called eos. esophagitis, gasteroenteritis, colitis, etc. The leading experts are at Cinci Chidren's Hospital (see link below). They have referred to it as a mini-epidemic, potentially more common than Crohn's. But yet, 99% of docs will tell you its "rare." Sigh.

doctors know VERY little about it. be careful-they have already given me a lot of incorrect info (except for my current doc). just bc your bloodwork is normal does not mean you don't have it. only 1/3 of eos disordered patients have abnormal bloodwork. it is NOT just a childhood disease, as many will tell you. (i could go on and on...it is similar to celiac in that docs are behind the curve).

here are some good links:

www.apfed.org

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

A peer-reviewed journal article, written by a (if not THE) leading expert in EGIDs. I highly recommend that you take it to your doctor after reading it (at least parts). It is unbelievable: Open Original Shared Link

Let me know if you need more---I have a ton.

PM me if you have questions, by the way:)

Also wanted to add that the other treatments include:

elimination of food issues, steroidal treatment, and elemental diets.

[jayhawkmom]

Thank you!

I had the barium tests this morning. ICK!!!

I had an endoscopy earlier this year, looking for Celiac, but my GI was concerned with other issues. Esophageal Stricture & GERD were noted. The only biopsies taken were from my duodenum, looking for Celiac.

I've been on reflux meds for a while now... I was deeply affected by it during pregnancy. But, once the baby was born... no further issues (that I was aware of). The reason noted on the order for the test this morning was Dysphagia.

My little boy is being treated for EE, without any official dx. His pediatrician has him on Singulair Granuals, 4 mg daily. His reflux issues have all but stopped, he's eating again. That's a goooood thing! =)

I'm just so sick of tests!!

Anyhow, this morning they had me standing... they had me drink 2 oz of liquid filled with carbonation, oh, it was terrible. Then I had to drink a ton of barium, then eat a big old handful of marshmallows - coated with it, then I had to lie on a table and drink even more. YUCK!! I hope I get some answers from this!

Oh, they've also ordered a blood test and a stool culture. I have to go do the blood draw later this afternoon.

[happygirl]

hey there,

just a question-you say you are being tested for eos. Through what means are they testing you for it?

Fill me in more when you have a chance---hope you are having a great night.

Laura

[jayhawkmom]

Oh, honestly... I don't know. It was mentioned that it might be an issue I'm having, so I'm having blood tests, stool tests, I had this horrible barium thing today - and I have to wait to hear back from my GI as to where I go from there. Like I said... I've already had the endoscopy, they know I have a stricture, but they thought it was caused by GERD. Now, it's wondered whether or not the GERD was caused by Eosonophils.

I guess instead of saying "being tested for.... I should say, "questioning." That's more accurate! =)

[happygirl]

Hey Kris,

No, that makes perfect sense. I know this is such a frustrating, strange world.

Just to let you know, even though you have had the endo, if they are wanting to dx you with it, the 100% only way to diagnose it is through biopsies of all four places. I have had these procedures numerous times, but they were never looking for it, never tested for it. Hence, why I get another one next week. If they suspect you have it, ask for an endo/colon with multiple biopsies in multiple places. They can sometimes see signs of it, but you have to have the biopsies under a microscope to see the elevated eosinophils.

None of the tests you have had done can confirm or deny EE/EGID. They can potentially give some insight (for instance, if you are part of the 1/3 that has elevated CBCs)...but, like I mentioned before, that doesn't rule out EE/EGID.

Where are you located? If you think this is a problem for you or your son, I would highly recommend getting a referral to Cinci or Philly if your doctor is not a highly trained specialist in EE/EGID. That journal article that I sent is invaluable....those other links have so much info, it is amazing.

I hope this helps some.

xoxo

[jayhawkmom]

Where are you located? If you think this is a problem for you or your son, I would highly recommend getting a referral to Cinci or Philly if your doctor is not a highly trained specialist in EE/EGID.

Thank you, I greatly appreciate your help. Once I have the results of the barium study, I will have to go in to see my GI. I realize that this is pretty much like Celiac with regards to the testing, kind of hit or miss. Another friend (from a food allergy group) sent me information on the Clinic in Cincinnati. I'm in Kansas City - but I'd be willing to take my child anywhere!! I have family in Kentucky, right across the river, so traveling there would not be out of the question for us.

Honestly, I feel clueless. I'm just sent for test after test and am not really sure exactly what anyone is looking for. With regard to Celiac, I had one of 4 *highly* elevated, while the rest were all high normal. Then my endoscopy came back negative for villi damage, yet... I have damage in my duodenum - yet...no Celiac dx. But, if I eat gluten - I get sick, period.

It's so frustrating to not be able to get answers. I'm going to read the links you sent as soon as I get my kiddos to bed, so I can really try to understand what I'm reading.

Again, thank you!!!

[happygirl]

Kris,

I completely and utterly understand.

I am similar to you, and I am thinking that if this is what I have, I might have had it back to my celiac/gluten intolerance days. EGIDs can manifest itself in one food allergy/intolerance, many, or all foods...so I wonder if mine "started" with just gluten. Keep reading and see what you think...we'll chat more.

here's another good one: Open Original Shared Link

[jayhawkmom]

OMGosh, reading some of the one you just sent nearly has me in tears.

I've been attempting to start the fight with our insurance company over Neocate for our son. However, we just learned that as of 1.1 - we'll have new insurance.

Currently he's drinking only Rice Milk. He's allergic to dairy and soy, as well as nuts and eggs. He has constant diarrhea, and his pediatrician suggested EE - and said that if he HAS it, he could respond well to the Leukotriene blocker. We've tried other things... brat diet being one of the most successful - but we keep having issues. His pediatrician said he's certain we'll end up at the GI, but wants to see if this will help first.

It SEEMS to be helping. But, I'm not 100% sure.

[Ellen]

"Currently he's drinking only Rice Milk."

Be careful of the Rice Milks...ALOT of them have gluten in them.

I hate to say I'm in the same boat as you...I go Tuesday and have a computer chip inserted into my esophagus to measure the acid reflux. I have to keep a diary of everything I eat and it measures the times the acid come up. They're apparently doing this to see what foods trigger the response...but they haven't mentioned anything about ES. Oh well...we're all in the same closet, but we're each getting variances of light that might help each other out.

[Mr J]

I have raised eosinophils, the lab test says EOSINOPHILS %, AUTOMATED COUNT 12 High > 4

did any of you have raised levels? The doc's vague conclusion was "may be related to an allergy". the only thing the allergy tests showed was allergy to dustmites.

I have unknown digestive misery - I suspect south of the stomach, I describe some of it on this Open Original Shared Link.

I've tried eradicating dairy, removing nuts and eggs with no effect.

I too have done the barium test, shows some reflux but its not a big problem of mine. I've not had a small intestine biopsy, is recovery from that uncomfortable?

thanks for posting those links, another avenue for me to chase!

cheers,

Mike

[happygirl]

mr. j,

recovery is a piece of cake-you are under heavy sedation. I have had three over the past few years and I'm going in for my fourth tomorrow. you will feel a little out of it, but thats it.

i would recommend finding a doctor who knows something about eosinophilic disorders. not all eos. patients have elevated eos levels, but in those that do, it is highly suspect.

it can occur in the esophagus, stomach, small intestine, and colon. you will actually need an endoscopy/colonoscopy, with multiple biopsies in multiple places, to dx. That is the ONLY way to dx. check out the links I posted above---I hope they help you out. PM me if you would like to talk more about it. But, I personally would recommend going further with this....and potentially move on from your doctor if he did nothing with those results. Sometimes removing certain foods helps---other times it does not. There are two yahoo groups that deal with eos---maybe try signing up and searching their files or asking for a doc trained in eos.

these doctors are listed on the eos yahoo group as having an interest in eos (i.e., probably means a member has seen them)

Tom Poirier

Gastroenterologist

3941 "J" St, Suite 450

Sacramento CA 95819

916-454-0655

Surrendar? Saini

Fountain Valley California

Gastroenterology

This is the doctor that diagnosed me...

So he has that much in his favor.. He recognized the symptoms from seeing a case in Medical School and did the right biopsies to make the diagnosis..

He has left the HMO that he was with and is in Private Practice in Orange County, California at last knowledge...

Judy

Eldon Haas,

Allergist Food

San Rafael California

(these are taken from eos-adults group. there are also some in washington, and other "surrounding" areas)

[pixiegirl]

I have EGID in my stomach, and large and small intestines. I was diagnosed via endoscopy. I had allergy tests and an elimination diet and I take Gastrocrom prior to eating. I'm doing well for now. I avoid foods that cause me problems. The Gastrocrom really helped me turn the corner and without it I don't do well at all. I believe on the scale of drugs its got very few side effects. (often the first treatment for EGID is steroids but my doctors wanted to start with a treatment with fewer side effects rather then more) and for me this is working out well.

Susan

[Mr J]

thanks for replying happygirl, I just spent a couple of hours reading some of the links you posted and there is still plenty more to read. I have an appointment with my lazy gastro doc next week, so I'll arm myself with some more information on eosiniphilic disorders before then and mention the subject in a prior email to give the doc a chance to read up on it too!

cheers,

Mike

[happygirl]

mike,

happy i could help. your best bet with your doc will be 1. you knowing something and 2. the journal article i posted. i highly recommend you bring it with you.

i'm a researcher by profession (not in the healthcare field, but apparently I should have been)....

[Helena]

I brought up the topic of eosinophilic esophagitis at my GI appointment yesterday. The conversation didn't really go anywhere. I mentioned that I'm still having reflux issues . . . we discussed the different meds I could try as I'm hesitant to go back on proton pump inhibitors after reading all these articles on how lowering stomach acidity could possibly contribute to the dev't of allergies in those with a genetic predisposition to get allergies. I will take some sort of antacid if I really need to . . . and, yes, Losec did help, but I'm not certain that reflux is my problem. What if it is ee?

My doc didn't want to do the biopsy for celiac on me because of my allergy issues (all the meds have food-derived ingredients. soy and egg was in one. corn is in just about everything) and because I was going to trust the positive blood test anyway. For the same reason, he is reluctant to explore the ee question----he told me that it is diagnosed in the same way (endoscopy, biopsy). He doesn't think I have it--it is a rare disorder he says. I suggested that it is rare because the disease was discovered relatively recently and mentioned that diagnosis rates are increasing. He said that that is true, but reaffirmed that he doesn't think that I have ee. I should have asked him to explain further . . . he did question me closely about my reflux symptoms so maybe there is a good reason why he thinks that reflux is the answer.

I do have high levels of eosinophils in my blood. My nasal rhinitis never goes away even in winter and even when I'm medicated. And I have a lot of severe food and environmental allergies.

I'm not sure what to think . . .I'll talk to my referring doc and perhaps get a second opinion. The doctor who referred me to the GI doc is interested in the ee question---I'll see her in Feb. I bet she'll refer me to someone else.

I have two questions about ee:

1) why does it cause burning in the throat? Does it actually cause acid reflux? Or is it just the cells in the throat?

2) I was originally prescribed medication for reflux because of burning in my lower throat/upper chest and laryngeal inflammation (which the ENT doc thought was probably caused by reflux)

Does ee ever cause problems with the larynx?? If not, maybe my GI doc is right.

[happygirl]

ok, i don't understand your doctor at all, to be honest.

you have high levels of eosinophil, your symptoms are at the least, suggestive of it, and yet he doesn't want to do anything it?

Open Original Shared Link

i personally wouldn't wait until february, but that is just me. i am shocked that your doctor told you this----it is INCORRECT. I would go to a doctor that knows something about EGIDs....it might not be e. esophagitis, but one of the other areas affected. you have classic symptoms and your blood levels are highly indicative. i am not sure what else your doctor wants? I would find a doctor who is willing to work with you. Now, the problem can be that taking the foods out (elimination diet) can cause false negatives...but that is another point. I strongly urge you to follow up on this because your doctor is providing you with old, incorrect, and outdated information.

I'm sorry

[Mr J]

......I have two questions about ee:

1) why does it cause burning in the throat? Does it actually cause acid reflux? Or is it just the cells in the throat?

..........

based on reading the link in happygirl's signature, I think the following happens.

1. eosinophils are present in the esophagus. This means that an abnormal amount of those special white blood cells are in the wall of the tube that leads from the mouth to the stomach.

2. the eosinophils irritate and damage the esophagus.

3. the base of the esophagus where it connects to the stomach has a valve. Valves are designed to allow passage in one way but not the other. eg lets air into tyre but not out. This valve has the acronym LES (lower esophagus sphincter).

4. I'm guessing here - the damage/inflammation of the esophagus extends to damaging the operation of this valve, so now the valve fails to block passage of stomach liquids back up the tube which leads to the mouth - this is reflux.

so yes I think it actually causes reflux/GERD. Particularly as the treatment section says the following:

" Reflux is a common symptom in people with EE or EGE. The two most common categories of medicine to treat reflux (when acid goes from the stomach back up the esophagus) are H2- blockers and proton pump inhibitors (PPI)."

the main section also says the following:

"Common symptoms {of EE } include:

• Reflux that does not respond to usual therapy

(which includes proton pump inhibitors,

I guessing that normally the reduction in acid strength from PPI is usually enough to stop irritating the esophagus, but in the case where the esophagus is already irritated from the eosinophils the reduction in acid strenght is not enough to stop the irritation. I don't think PPIs fix the LES valve, that still continues to malfunction and let stomach acid back up, instead PPIs reduce the aciditity of the stomach liquids which are backing up and therefore reflux continues but it is less harsh when PPIs are taken.

cheers,

Mike

[Mr J]

.....

Honestly, I feel clueless. I'm just sent for test after test and am not really sure exactly what anyone is looking for.

......It's so frustrating to not be able to get answers.....

hello jayhawkmom,

the fact that we have found this message board means none of us here are clueless, but know what you mean about the frustration of searching for answers. The problem is that some of us have to deal with doctors who are clueless. So this is where we have to do what happygirl suggests and arm ourselves with knowledge.

it is good for my mental health to express my frustration so excuse me while I vent here:

i was given the barium test for different reasons to you - delayed emptying of stomach (gastroparesis) - the problem with this test is that even a stomach paralysed by gastroparesis is frequently able to empty low nutrient liquids normally. So passing that test (which I did) is fairly meaningless for that condition anyway as the stomach will react totally differently to food than to no nutrient barium liquid.

so i was given an endoscopy, but no biopsy and sent home and with the statement "everything looks ok". At that point I was weighed at 107 lb with my clothes on, and they had no intention of doing any further investigations. Thats not a reasonable weight for a man 5' 7.5" , I think they should have considered feeding tubes in the event of being unable to find another solution. Anyway I discovered that gluten caused my gastroparesis and managed to put on some weight, but I'm still too thin So I went back to the gastro doc and told him about the gluten connection, all of a sudden the doc became gluten aware and started to display some knowledge which never occurred to him before. So I'm hoping that by sending him a reference to E disorders first he will become eosinophil aware before my appt next week.

I think the statement I was given about my raised blood eosinophils is a joke "may be related to an allergy" - yeah right! why bother testing me if they don't know what to do with the results.

I must admit the possibility of being on an elemental diet doesn't bother me. My eating habits don't resemble that of a normal person. this afternoon I drank some pre-digested baby formula to keep me going until my evening meal of fish. The baby formula does seem to give me good lasting energy though, was flying in the skatepark this evening but maybe that's the new swiss ceramic bearings i put in my wheels

anyway I'll be asking my gastro doc 2 things at my appt - will they test me for E disorders and do they know how to test for those disorders - which i believe means correctly interpreting a biopsy.

ah I feel better now,

cheers,

Mike

[jenvan]

My brother just got diagnosed with this last week. As Mayster said, it is thought that allergies are the cause. Allergy/intolerance testing would be a good option. Depending on how severe, esophageal dialations may be necessary. I've had them done in the past, they're pretty harmless, not painful.

[happygirl]

i am at work, but have a lot to post....will hopefully do so tonight

[jerseyangel]

i am at work, but have a lot to post....will hopefully do so tonight

Will be looking forward to it. Wow--you're back to work already

[Helena]

Thanks, all for the replies. I now get the relp b/n ee and reflux! happygirl, I really appreciate all the resourcesyou're posting.

about the allergy testing---good point. fortunately (from the perspective of not wanting to go to more medical appointments than I can help) i've been through a lot of allergy tests. I didn't know about the possibility of needing one's esophagus widened. Sounds scary, so I'm glad to hear that it doesn't hurt.

[happygirl]

So there are a lot of things on my mind about all this and I am going to try to post random ones that I think of

You can have one area affected or multiple. The ones involving the stomach can also cause reflux problems.

There is also something called hypereosinophilia, as well as Churg-Strauss (having to do with vasculitis).

jen-interesting that you mention your brother has ee. also interesting that they suggested dilation....that is not often mentioned in the recent literature. in general, the starting point is identifying allergens/intolerances (the top eosinophilic allergists and immunologists actually recognize that you may not test positive on an IgE test and recognize that IgG and other things---they have even specifically mentioned Celiac!---can be in play), doing an elemental diet if necessary, combinations of steriods (entocort (budenisone) and in EE, allergy meds, are used.

Journal of Clinical Immunology and Allergy: by Dr.Rothenberg, "THE Eos Guy"

FOR EE:

A trial of specific food antigen and aeroallergen avoidance is often indicated for patients with atopic EE, and if

unsatisfactory or practically difficult (when patients are sensitized to many allergens), a diet consisting of an elemental formula is advocated. Interestingly, it has been shown that an elemental diet frequently improves symptoms and reduces the number of eosinophils in the esophageal biopsy specimens in patients with primary EE diets frequently require placement of a gastrostomy tube to achieve adequate caloric support. Glucocorticoids (systemic or topical) have also been used with satisfactory results. Systemic steroids are used for acute exacerbations, whereas topical steroids are used to provide long-term control.

When using topical steroids, we recommend the use of a metered-dose inhaler without a spacer. The patient is instructed to swallow the dose to promote deposition on the esophageal mucosa. In the author’s practice fluticasone dipropionate is the drug most used, with a wide range of dosages on the basis of severity and level of response. In a noncontrolled open-label study, topical fluticasone has been shown to decrease levels of eosinophils and CD8+ cells in the proximal and distal esophagus. The toxicity associated with inhaled glucocorticoids (eg, adrenal suppression) is unlikely to be seen with swallowed fluticasone because this drug undergoes first-pass metabolism in the liver after gastrointestinal absorption. However, one

study reported that 2 of 13 patients treated with topical fluticasonehad esophageal candidiasis. Finally, even if GERD is not present, neutralization of gastric acidity (with proton pump inhibitors) might improve symptoms and the degree of esophageal pathology.

for EG

Eliminating the dietary intake of the foods implicated by skin prick testing (or RASTs) has variable effects, but complete resolution is generally achieved with amino acid–based elemental diets.179 Once disease remission has been obtained by means of dietary modification, the specific food groups are slowly reintroduced (at approximately 3-week intervals for each food group) and endoscopy is performed every 3 months to identify sustained remission or disease flare up. Drugs, such as cromoglycate, montelukast, ketotifen, suplatast tosilate, mycophenolate mofetil (an inosine monophosphate dehydrogenase inhibitor), and “alternative Chinese medicines,” have been advocated but are generally not successful in the author’s experience. In our institution an appropriate therapeutic approach includes a trial of food elimination if sensitization is found on the basis of food skin testing, RAST, or both. If no sensitization is found or if specific food avoidance is not feasible, elemental formulas are instituted. Anti-inflammatory drugs (systemic or topical steroids) are the main therapy in cases in which diet restriction is not feasible or has failed to improve the disease. There are several forms of topical glucocorticoids designed to deliver drugs to specific segments of the gastrointestinal tract (eg, budesonide tablets [Entocort EC] designed to deliver drug to the ileum and proximal colon). In severe cases, refractory or dependent on glucocorticoid therapy, intravenous alimentation or immunosuppressive antimetabolite therapy (azathioprine or 6-mercaptopurine) are alternatives. Finally, even if GERD is not present, neutralization of gastric acidity (with proton pump inhibitors) might improve symptoms and the degree of esophageal and gastric pathology."

from another article in Journal of National Medical Association:

Untreated patients with EG can progress to severe malabsorption and malnutrition or remit spontaneously.

from the J mentioned before by Dr. R:

"The natural history of eosinophilic gastritis, enteritis, and gastroenteritis has not been well documented; however, these diseases are often chronic waxing and waning disorders. Notably, the involved gastrointestinal segments often vary from one time to another, necessitating routine endoscopic evaluation. In patients with clear food antigen–induced disease, abnormal levels of circulating IgE and eosinophils often serve as markers for tissue involvement."

Patti, I am interested in what you think about all this because 1. you have numerous food issues and 2. you said at one point when you did better, it was because you were on steriods. HMMM....