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Eosinophilic Esophagitis


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#1 jayhawkmom

 
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Posted 09 November 2006 - 10:06 AM

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?
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Ian - 3

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#2 Mayster

 
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Posted 10 November 2006 - 08:51 AM

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?


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#3 happygirl

 
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Posted 10 November 2006 - 09:07 AM

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
http://www.cincinnat...e/eosinophilic/
http://www.chop.edu/...ic.jsp?id=83825
http://biz.yahoo.com...m041.html?.v=47
http://health.enotes...roenteropathies

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: http://download.jour...74903025314.pdf

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.
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#4 jayhawkmom

 
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Posted 10 November 2006 - 09:42 AM

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.
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Bean - 8
Ian - 3

#5 happygirl

 
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Posted 10 November 2006 - 02:14 PM

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
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#6 jayhawkmom

 
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Posted 10 November 2006 - 03:02 PM

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! =)
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Jay - 11
Bean - 8
Ian - 3

#7 happygirl

 
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Posted 10 November 2006 - 03:16 PM

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
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#8 jayhawkmom

 
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Posted 10 November 2006 - 06:25 PM

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!!!
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Jayhawkmom -
Mom of three....
Jay - 11
Bean - 8
Ian - 3

#9 happygirl

 
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Posted 10 November 2006 - 06:47 PM

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: http://www.eosinophi....com/index.html
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#10 jayhawkmom

 
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Posted 10 November 2006 - 07:14 PM

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.
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Ian - 3

#11 Ellen

 
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Posted 12 November 2006 - 10:13 PM

"Currently he's drinking only Rice Milk."

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

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. :D
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Ellen
Diabetic for 30 years, Celiac for 1.5 years
Mom of one daughter on Gluten-free/Caisen-free diet, and another "normal" non-food allergied daughter
Wife to a husband of allergy to ALL antibiotics, to the point of where he cna't eat poultry or fish because they absorbe it in their meat when slaughtered.
Basically a family that eats NOTHING without a reaction.

#12 Mr J

 
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Posted 13 November 2006 - 07:46 PM

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 enzyme thread.

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
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age 47
enterolab tests
HLA-DQB1*0602, 0604 - sensetivity genes
Antigliadin IgA and Transglutaminase igA positive
Casein IgA positive
primary problem - gastroparesis - paralysis of the stomach
under control with the right drugs

#13 happygirl

 
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Posted 14 November 2006 - 07:06 AM

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)
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#14 pixiegirl

 
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Posted 14 November 2006 - 02:21 PM

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
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#15 Mr J

 
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Posted 14 November 2006 - 11:40 PM

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
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age 47
enterolab tests
HLA-DQB1*0602, 0604 - sensetivity genes
Antigliadin IgA and Transglutaminase igA positive
Casein IgA positive
primary problem - gastroparesis - paralysis of the stomach
under control with the right drugs




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