Eosinophilic Esophagitis

[happygirl]

General overviews, groups related to Eos research and support

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two groups on yahoo: eos. and eos-adults

Two “main” centers for EGID/EE disorders

Cincy:

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Philly:

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Journal articles

EG (2006) journal article

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all EE/EGIDs 2004 journal article-Dr. Rothenberg. Best overview:

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Abstracts of Journal articles (do not have full text at this time)

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Newspaper articles

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Clinical trials

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lists of other references

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References of articles written by docs at this Philly center: Open Original Shared Link

Suggested literature by Doctors who study eosinophils at Cincinnati Children's Hospital Medical Center recommend the following journal articles for more information about research about eosinophilic disorders.” Open Original Shared Link

Pages from “ask the expert” Open Original Shared Link

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Doctors:

Cincy: Open Original Shared Link

Philly: Open Original Shared Link

Johns Hopkins: Open Original Shared Link

NIH/NIAID: Open Original Shared Link and

[happygirl]

Portions of an email I received from a lady in the Tuscon Eosinophilic support group---this should be helpful to anyone who is going to be tested:

Also so sorry to hear about your struggles. They sound very familiar. As with many disorders.... symptoms can crossover. However ..if you suspect that you might have an Eosinophilic Disorder there are questiosn that you can ask your doctors to hopefully get to the bottom of it. Actually I just reread your email and see that you should have had your SCOPE today 11/15 ? It is great that your doc took so many biopsies. One common problem in the adult population is that docs don't always take biopsies at all on EGD ...unless they "SEE" something suspicious. This can lead to mis and wrong diagnosis in the case of EGID ....because EGID CAN ONLY BE DXd via biopsies that are read properly by the pathologist. So.... that is a great first step. SECOND...when your doctor calls you with the Biopsy results.....ASK HIM what the Eosinophil Counts were? If he says that there were none....ask if it specifically states that on the Pathology Report? If it does not mention EOSINOPHILS one way or the other...ask for the slides to be RE-READ. My son was MIS_DIAGNOSED 3 times in the first year of getting EE because the biopsy slides WERE NOT READ PROPERLY. We were told there were NO EOS...when infact there had been EOS ALL ALONG and increasing in numbers each scope!!!!!!! Also...get a copy of your Pathology Report and keep that in your Medical Records. You can request that from either your doctor OR from the Hospital Medical Records.

As far as whether EOS will be present because you have been on an elimination diet for so long...that is hard to say? IF YOU DO HAVE EGID......Since you are still having symptoms....my guess would be that then EOS are reacting and would be present in the biopsy. Since you are still so sick and symptomatic you would most likely still be reacting to something that you HAVE been eating in the INCLUSION DIET. The best research that I have is that it takes between 4-12 weeks for the body to "HEAL" from the EOS when you Eliminate all offenders.

You are on the right track in gathering the info needed to get a diagnosis. My suggestion is BE PERSISTANT until you get an answer. SO many kids and adults go mis or un diagnosed with this disease. I hope that you get answers soon and feel free to email or call me anytime. I am really glad that you contacted our support group. It helps to know that you are not the only one going through these types of struggles and talking to others who face the same challenges day in and day out is very helpful. We formed this Support Group 2 years ago and have grown to 27 kids with EGID ranging in age from 6 months to 19 years old. All of the resources that you listed are the sources for info on EGID. Hang in there and let me know what you find out.

I hope that my response helped. It is difficult to contain all there is to share about this disease in an email. But feel free to contact us anytime and I really Pray that these biopsies give you answers and direction.

[Helena]

Wow, thanks again for all the great resources. The more I think about it, the more this makes sense in my case. I developed the "reflux" problems after being taken off corticosteroid sprays for asthma. . . .maybe there was an underlying problem that the meds were masking. Those meds do suppress the immune response and shouldn't but *can* have a systemic effect. (My respirologist decided that I don't have asthma but have vocal chord dysfunction instead.)

[Mr J]

......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! =)

.......

oh yes that's a lot better than my lazy gastro doc who has so far told me to go home just continue the way I am. Yesterday I sent him a series of 3 emails describing my condition (kaiser limit the size of email msgs). I also sent them to my general doc who replied with a big thumbs up regarding what I wrote, so I know I didn't write anything stupid. This weekend i'm going to send another msg explaining why i disagree with his inaction and in another i'll mention e disorders of the entero region.

of course i've no idea if I have it or not, but from perusing the great collection of links above I certainly fit the criteria which deserves testing for it ie. I display all of the following

1. digestive misery - undiagnosed source.

2. raised peripheral (blood) eosinophils with no known source such as parasites

plus some circumstantial stuff like childhood asthma

eating has become a nervous experience nowadays, but on the plus side my new regimen of replacing some meals with pre-digested baby formula seems to be working. The formula fuelled me for another session in the skatepark yesterday, managed about 45min of fun just before dark it gives me some wind, but provides good lasting energy and I can go up and down the ramps without getting reflux, even babies get some wind don't they

cheers,

Mike

[azmom3]

Happygirl: Did you have your endoscopy done yet? Have they told you anything or when will you find out more? I've been thinking about you and wondering how it's all coming along.

My son will be having his endoscopy (they never said anything about a colonoscopy....), in a week and half checking for celiac and ED's. I want to make sure it's done right the first time. I do not want to put a 2 year old under general anesthesia and through any procedures any more than I absolutely have to. What questions should I be asking ahead of time to make sure we only have to do this once? (I mean for the diagnosis...I realize we'll need repeat scopes probably to look for changes) Both the GI dr. and allergist mentioned EE, but not the other eos disorders. I guess I need to ask for the colonoscopy too??? How do I know how knowledgeable they are with ED's? How do I find out how good the pathologist is? Also, my son has had an upper respiratory infection/cold, no fever, but lots of stuffiness and gunk and coughing, for about 4-6 weeks. He took amoxicillin for 10 days and had no improvement. They wouldn't postpone the endoscopy for this, would they? What other questions should I ask? We've never gone through a process and procedure like this before, so I'm a worried mom who wants to get it right the first time and not look back saying "I should've done this or that" or "if I had to do it over again...."

Good news is that we removed the big known allergens from his diet...all dairy, eggs, peanuts and tree nuts. We also have been supplementing with Neocate adn Elecare and he's taking prevacid for GERD (no improvement....not a good sign) and miralax (he's pooping every other day now...yay). He gained 2 pounds in the last month! He had only gained 3 pounds, 12 ounces in the whole previous year! He still needs to gain 2 more pounds to be back on the growth chart, but we were soooo happy. He already seems like a different kid...happy, not as clingy, looks and acts healthier, etc., despite having a bad cold. Bad news is that his allergy numbers and the number of foods he is allergic to went up in just 5 months or so, even being allergic to rice (his first food)...not sure how reliable that is with little kids, but the allergist seemed more sure it might be EE because of that. I'm prepared to deal with whatever comes out of it though at this point. Please let me know if you have anything else that can help me be more prepared. Thanks!

[happygirl]

well, even if they are "only" doing an endoscopy, you need to specifically request that they take multiple biopsies in multiple places in his esophagus, stomach, and small intestine (they can do all through an EGD).

bad news....if the tests are negative, it doesn't mean that it rules out EGIDs since he has many of the allergens out. (I am in the same boat. We essentially started treatment before getting a diagnosis. It would be like a Celiac getting gluten out of their diet, and THEN doing the biopsy.)

definitely read the email that I posted from the support group leader in Tucson....that will help you frame things. You are going to have to speak to the doctor BEFORE the procedure to guarantee what you want tested. otherwise you will be back in, trying to get more biopsies.

i had my egd/colonoscopy (but, I am having, among other things, classic GI symptoms, so it made sense to do the colonoscopy. you at least need biopsies taken in the other three places for your son. plus, have they done bloodwork and looked at his eosinophil levels...which, are *sometimes* present and are indicative of EGIDs). I get my results either Wed or if not by then, the week after T-G. But, we are very well aware that everything might come back negative because I've been on this elimination diet for so long.

azmom---best advice is to just sit down and try to read through as many of the links that I posted. keep reading. and reading. i keep reading things that make me ask my doc questions...slowly piecing it all together.

PM or email me anytime. I've been thinking about you too. xoxo

[jayhawkmom]

Well, I got the results of my barium study. And, I just don't get it AT ALL.

Bear in mind, I had my endoscopy in September. I was dx with GERD due to esophageal stricture, a "patchulous" LES, and hiatal hernia.

So, they call with the results and say... "You aren't refluxing, there are no strictures, and everything looks perfectly normal with the exception of a hiatal hernia"

HOW can that be??? Is the barium study wrong.... or is the endoscopy? My guess is that the endoscopy is correct, but I need to call them back and ask for further information.

I have not yet been able to get to the lab for my blood draw, due to 9million reasons. But, I'll go on Monday.

I just don't understand how I can have all these issues - and then none. The endoscopy even included measurements of the stricture - and yet, it isn't there. Hmmm.

[Ellen]

HOW can that be??? Is the barium study wrong.... or is the endoscopy? My guess is that the endoscopy is correct, but I need to call them back and ask for further information.

Thank goodness I haven't had to do a barium test yet...everything I've heard of them has been awfull!

I just had a Bravo test done on Tuesday...they insert a computer chip in the esophagus and it measures the reflux passing. They did a biopsy of the esophagus, small intestine, and stomach while they were in there and said to me just from the looks of it it seemed to be EE/EOS. Mind you, this is after 6 months of different non-working proton pump inhibitors (Nexium, Prilosec and Pepcid).

I just have a question...if anyone has had this done, how long did it take to pass the computer chip? They told me it would be within a few days after the test, but it was inserted on the 14th and the pain of trying to swallow with this thing in my esophagus is driving me crazy! The only thing I can comfortably have are liquids. I haven't felt this thing move either...it's still sitting where they installed it right about 2/3 of the way down my esophagus.

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.

[happygirl]

Ellen,

i am sorry you are going through all of that. I honestly don't know anything about the computer chip, I am sorry I hope it is "resolved" soon though. I would definitely call on Monday to discuss this...and make sure they "get it" and don't blow you off! Do you have a good doctor who knows about EGID/EOS/EE?

if you have ee or another type of eos, the fact that the proton pump inhibitors is consistent and make sense. what I have read is saying that it is a classic complaint, because it is working on different mechanisms. go figure. I would recommend reading the post that I put on here earlier, from the leader of an eos support group. she gave me good information of what to ask when the results come back.

jayhawkmom,

Well its been about 2 months since your endo, right? and you have been on a modified diet, correct? part of the treatment for some people with eos. is to remove certain foods and it can put them in somewhat of 'remission' for certain periods. (its like a celiac being biopsied when they are gluten free...the thought is that you heal and then don't "look" like a Celiac, but you still are).

Laura

[Mr J]

the barium test wasn't one of the fun moments in my life but I wouldn't go so far as to say it was awful. From memory it involved drinking large quantities of a liquid somewhere in between the consistency of thickened cream and toothpaste thru a big bore straw. I also seem to remember having to gulp a fizzing liquid which inflated my stomach. Just need some willpower to force it all down

I was being looked at for a different region than the LES, but maybe you can draw some analogies from my experience jayhawkmom. I was being checked for malfunction of the Pyloric Sphyncter - a valve south of the LES and controls emptying of the stomach contents into the small intestine. And also stomach motility - the ability of the stomach to contract and create the pressure necessary to force the contents past the PS valve. As mentioned earlier one problem is that the stomach reacts differently to the barium goo than to say scrambled eggs. Not just that but the stomach has its good days and bad days. Members of the yahoo gastroparesis group reported how their distressed stomachs would behave perfectly under that test one day, yet fail the test another day.

so was I glad that I got the test? Yes absolutely, I know that no strictures are causing my problem and that is good to know. But it was not useful for diagnosis of my (former) primary problem of gastroparesis. It didn't achieve that. Nevertheless I did get a diagnosis for gastroparesis based on circumstantial symptoms and got medicine which fixed that condition - this confirmed the circumstantial diagnosis and allowed me to eat more reasonable quantities. Unfortunately the medicine reglan seriously messed with my ability to think straight and I had to stop taking it or lose my job. Not just that, although I could eat more I didn't get any bigger so something else was wrong.....

actually the barium test did show some reflux in the lying down on my stomach position. However reflux isn't a major problem of mine and I have to sleep lying on my back anyway - an injury to my shoulder was nicely repaired with surgery years ago, but it doesn't like it when I sleep on my stomach, so I've learned not to do that.

cheers,

Mike

[Ellen]

Ellen,

i am sorry you are going through all of that. I honestly don't know anything about the computer chip, I am sorry I hope it is "resolved" soon though. I would definitely call on Monday to discuss this...and make sure they "get it" and don't blow you off! Do you have a good doctor who knows about EGID/EOS/EE?

if you have ee or another type of eos, the fact that the proton pump inhibitors is consistent and make sense. what I have read is saying that it is a classic complaint, because it is working on different mechanisms. go figure. I would recommend reading the post that I put on here earlier, from the leader of an eos support group. she gave me good information of what to ask when the results come back.

happygirl,

Thanks. I actually have an excellent doctor. After reading the posts here and thinking this is what I have, then going to him with the idea that this is what I have, he actually said that was what they were checking me for anyway. He didn't do the colonoscopy, but just from his comments in my drug induced state afterwards he said he was pretty sure it was EE. He has to wait for the official biopsies before officially diagnosing me, He even showed me photos of my esophagus, stomach and intestines and explained everything right down the line.

As for the chip, it must be moving finally. I was able to eat dinner without much pain, but I haven't seen it pass through. Yuck! Just in case anyone has the Bravo system thingy done...it's taking me about 5 days to start the passing of the chip.

[Mr J]

i have now had my appt with the gastro doc last wed and corresponded with him by email since. The experience makes me angry. so the summary of the situation is that I asked him about the raised eos levels by email but got no answer, I then politely argued with him about various things during my appt. with an outcome of not running extra tests which I asked for, but at least re-running some tests one of which measure my eos levels - initially he didn't want to do any tests. Previously the levels were 12 (High > 4 threshold), new tests measured 20. I asked the question again: "raised peripheral eos + unknown gi distress => test for eosinophilic GES?" - no answer. I relayed my frustration to my general doc and she will refer me to another gi specialist at another kaiser location for a second opinion, so thats something at least.

the rest of this post is just going to be an off-topic vent I'm afraid. I do feel comforted knowing that others on this msg board are fighting ignorance, so i'll post my experiences for those who are interested.

my situation is that I have had gluten induced motility (gi movement/throughput) problems in at least 2 sections of my gi tract - delayed stomach emptying (called gastroparesis) and constipation. Both these problems fixed by removing gluten - stomach now rumbles readily which means smooth muscle of stomach is contracting, no more constipation means smooth muscle of large intestine is contracting. However I need an enormous amount of digestive enzyme supplements and need to eat tiny little meals in order to digest anything. So both myself and a gi specialist who I saw briefly in thailand (thats where my wife is from hence a visit to that country) suspects malfunctioning pancreas - not unreasonable particularly as i test borderline for 2 cystic fibrosis tests, although it would have to be a fairly weird mutation of CF that spares my lungs - i have normal capacity. Doc's answer is "but your blood albumin levels are normal", i've previously protested that "i'm only on 1,100 calories" - docs answer "but your blood albumin levels are normal" - his answer to everthing. I explain that he shouldn't put all his faith in a few tests and tell him with such a small food intake and on such a high intake of enzymes that the previous malabsorption test wouldn't mean anything. I'd been told that it was ok to carry on enzyme supplements for this test but with reflection of course it would skew the results.

the atmosphere during visit got tense but remained civil so he said alright he will re-run blood and malabsorption, but not the specific pancreas tests i asked for. and I said ok what i will do this time is completely stop my supplements, eat normal quantities of food, get sick but at least get some meaningful results. For once he sounded almost human and suggested that maybe i'd want to wait until after enjoying thanksgiving before making myself sick with a "normal food" challenge. By normal i mean normal quantity - no gluten of course, piecing together various online literature tells me that 100gm intake of fat is ideal for the malabsorption test - too much fat and even a normal body can't cope, too little and it doesn't work the lipase production of pancreas and small intestine hard enough. I tell the doc no, thanksgiving is perfect time, i'm not American so don't celebrate this culturally american event, i could get sick thurs and fri, then spend sat and sunday recovering and be in reasonable shape for work monday. Off topic is that I'd had a bad slam in the half pipe on my skateboard too and needed to rest anyway so I thought that is the best time for that test. So on thanksgiving day I drove to McDonalds for my "fat challenge"... and started to get sick.

then I thought dammit, I'm going to force the food thru my system with a motility drug called "reglan" aka metoclopramide - sometimes given to ppl who are experiencing severe nausea from AIDS or something but in my case to increase my loss of motility - this drug seriously messes with the mind which is why i previously abandonded taking it. It won't skew the results I thought coz all it will do is achieve normal quantities of food intake without the awful bloating and nausea - basically it would put me in the position of many celiacs who have normal quantities of food intake but can't absorb properly. In my situation I believed my pancreas would fail to cope thus causing malabsorption from failure to digest rather than flattened villi.

the reglan spaced me out, but sure was effective at getting a normal intake without nausea. It was quite novel experience to be able to eat burger and chips (fries) without nausea. i expected to get steatorreah but didn't! number 2 looking quite normal

well well pancreas is working after all, looks like a motility problem in just the middle section of my gi -tract. Unusual, typically gastroparesis sufferers have slowness in all 3 sections. I mail this suggestion to the gi doc => no bloody answer is this man just arrogrant or ignorant?

this is of course good news that my pancreas is working and as expected fat absorbtion test result was good - very good handling 2 days of McDonalds. Extra good thing was that my injury wasn't as bad as I initially feared and was able to skateboarding the next day - early morning before injesting the drug

But this of course leaves me with my only current "cure" being a drug which messes my mind so much that I can't work when on it, plus unanswered eos questions.

I know of 2 other motility drugs - desparation drove me to experimenting with Kava Kava a while ago - like reglan a dopamine antagonist - and it works! bad thing is that the amount I need to get a motility effect is large - 1/2 ounce dry weight which i turn into a drink. this makes me sleepy the next day and it is a mind altering drug so out of the question to be stoned during the day in work. So I'm currently managing by taking liquid meals only during the day only and getting wasted on reglan and/or kava in the evenings and eating solid food then. I've been able to put some weight on too, but this life is hardly normal. I tell the gi doc this and his response "glad to hear you are doing well".

Doing well? liquid only during the day, stoned at night. This man is not arrogant, he is plain bloody stupid

I know of another drug - just like reglan but not mind altering

legal in Canada but not FDA approved here

- "domperidone aka motillium", so there are many Canadian drug companies which take advantage of legal a loophole for such medicines, they get a US doc's prescription and then re-write it by Canadian docs before shipping the drug across the border. so I explain this to the doc and ask for his prescription, even going so far as to say i will take full responsibility for any negative effects. His answer was yes this drug won't mess my mind like reglan but no he is not allowed to do that not only is he stupid he doesn't want to help me either. he wouldn't even commit himself to saying that the drug is good idea, he seems more interested in protecting himself than giving advice.

is eos levels in my small intestine causing my loss of motility is my current question - no answer from doc on that one either. I really think this doc is out of his depth, i need another one.

ah well life is not all bad, put some weight on, discovered my pancreas is ok, had enough energy to skateboard every day before work this week. Can handle with being spaced out in the evening for the moment (about 2 1/2 hrs before my senses come back).

cheers,

Mike

[azmom3]

i have now had my appt with the gastro doc last wed and corresponded with him by email since. The experience makes me angry. so the summary of the situation is that I asked him about the raised eos levels by email but got no answer, I then politely argued with him about various things during my appt. with an outcome of not running extra tests which I asked for, but at least re-running some tests one of which measure my eos levels - initially he didn't want to do any tests. Previously the levels were 12 (High > 4 threshold), new tests measured 20. I asked the question again: "raised peripheral eos + unknown gi distress => test for eosinophilic GES?" - no answer. I relayed my frustration to my general doc and she will refer me to another gi specialist at another kaiser location for a second opinion, so thats something at least.

the rest of this post is just going to be an off-topic vent I'm afraid. I do feel comforted knowing that others on this msg board are fighting ignorance, so i'll post my experiences for those who are interested.

my situation is that I have had gluten induced motility (gi movement/throughput) problems in at least 2 sections of my gi tract - delayed stomach emptying (called gastroparesis) and constipation. Both these problems fixed by removing gluten - stomach now rumbles readily which means smooth muscle of stomach is contracting, no more constipation means smooth muscle of large intestine is contracting. However I need an enormous amount of digestive enzyme supplements and need to eat tiny little meals in order to digest anything. So both myself and a gi specialist who I saw briefly in thailand (thats where my wife is from hence a visit to that country) suspects malfunctioning pancreas - not unreasonable particularly as i test borderline for 2 cystic fibrosis tests, although it would have to be a fairly weird mutation of CF that spares my lungs - i have normal capacity. Doc's answer is "but your blood albumin levels are normal", i've previously protested that "i'm only on 1,100 calories" - docs answer "but your blood albumin levels are normal" - his answer to everthing. I explain that he shouldn't put all his faith in a few tests and tell him with such a small food intake and on such a high intake of enzymes that the previous malabsorption test wouldn't mean anything. I'd been told that it was ok to carry on enzyme supplements for this test but with reflection of course it would skew the results.

the atmosphere during visit got tense but remained civil so he said alright he will re-run blood and malabsorption, but not the specific pancreas tests i asked for. and I said ok what i will do this time is completely stop my supplements, eat normal quantities of food, get sick but at least get some meaningful results. For once he sounded almost human and suggested that maybe i'd want to wait until after enjoying thanksgiving before making myself sick with a "normal food" challenge. By normal i mean normal quantity - no gluten of course, piecing together various online literature tells me that 100gm intake of fat is ideal for the malabsorption test - too much fat and even a normal body can't cope, too little and it doesn't work the lipase production of pancreas and small intestine hard enough. I tell the doc no, thanksgiving is perfect time, i'm not American so don't celebrate this culturally american event, i could get sick thurs and fri, then spend sat and sunday recovering and be in reasonable shape for work monday. Off topic is that I'd had a bad slam in the half pipe on my skateboard too and needed to rest anyway so I thought that is the best time for that test. So on thanksgiving day I drove to McDonalds for my "fat challenge"... and started to get sick.

then I thought dammit, I'm going to force the food thru my system with a motility drug called "reglan" aka metoclopramide - sometimes given to ppl who are experiencing severe nausea from AIDS or something but in my case to increase my loss of motility - this drug seriously messes with the mind which is why i previously abandonded taking it. It won't skew the results I thought coz all it will do is achieve normal quantities of food intake without the awful bloating and nausea - basically it would put me in the position of many celiacs who have normal quantities of food intake but can't absorb properly. In my situation I believed my pancreas would fail to cope thus causing malabsorption from failure to digest rather than flattened villi.

the reglan spaced me out, but sure was effective at getting a normal intake without nausea. It was quite novel experience to be able to eat burger and chips (fries) without nausea. i expected to get steatorreah but didn't! number 2 looking quite normal

well well pancreas is working after all, looks like a motility problem in just the middle section of my gi -tract. Unusual, typically gastroparesis sufferers have slowness in all 3 sections. I mail this suggestion to the gi doc => no bloody answer is this man just arrogrant or ignorant?

this is of course good news that my pancreas is working and as expected fat absorbtion test result was good - very good handling 2 days of McDonalds. Extra good thing was that my injury wasn't as bad as I initially feared and was able to skateboarding the next day - early morning before injesting the drug

But this of course leaves me with my only current "cure" being a drug which messes my mind so much that I can't work when on it, plus unanswered eos questions.

I know of 2 other motility drugs - desparation drove me to experimenting with Kava Kava a while ago - like reglan a dopamine antagonist - and it works! bad thing is that the amount I need to get a motility effect is large - 1/2 ounce dry weight which i turn into a drink. this makes me sleepy the next day and it is a mind altering drug so out of the question to be stoned during the day in work. So I'm currently managing by taking liquid meals only during the day only and getting wasted on reglan and/or kava in the evenings and eating solid food then. I've been able to put some weight on too, but this life is hardly normal. I tell the gi doc this and his response "glad to hear you are doing well".

Doing well? liquid only during the day, stoned at night. This man is not arrogant, he is plain bloody stupid

I know of another drug - just like reglan but not mind altering

legal in Canada but not FDA approved here

- "domperidone aka motillium", so there are many Canadian drug companies which take advantage of legal a loophole for such medicines, they get a US doc's prescription and then re-write it by Canadian docs before shipping the drug across the border. so I explain this to the doc and ask for his prescription, even going so far as to say i will take full responsibility for any negative effects. His answer was yes this drug won't mess my mind like reglan but no he is not allowed to do that not only is he stupid he doesn't want to help me either. he wouldn't even commit himself to saying that the drug is good idea, he seems more interested in protecting himself than giving advice.

is eos levels in my small intestine causing my loss of motility is my current question - no answer from doc on that one either. I really think this doc is out of his depth, i need another one.

ah well life is not all bad, put some weight on, discovered my pancreas is ok, had enough energy to skateboard every day before work this week. Can handle with being spaced out in the evening for the moment (about 2 1/2 hrs before my senses come back).

cheers,

Mike

Mike,

Can I ask what cystic fibrosis tests you took? Sweat test? Or have you had the gene test?

[Mr J]

hello azmom, the allergy doc spotted a previously ignored result - low chloride and sent me for the sweat test and gene test. I tested borderline leaking of chloride thru sweat and negative for (if I remember rightly 25 mutations of) CF genetics. Apparently there are hundreds of mutations, so although the subset that was tested catches most cases it won't catch all. The doc's never did actually give me an answer on what that means but I made my own mind up that it was unlikely given my age and aerobic capacity which is fine, childhood asthma went away. Now that I've passed my self imposed McDonald's fat challenge I'm sure I don't have it and am leaking chloride for unknown reasons. I get plenty of salt in my diet, crave it and with low blood pressure see no reason to reduce my intake.

cheers

[Mr J]

........I know of another drug - just like reglan but not mind altering

legal in Canada but not FDA approved here

- "domperidone aka motillium", so there are many Canadian drug companies which take advantage of legal a loophole for such medicines, they get a US doc's prescription and then re-write it by Canadian docs before shipping the drug across the border..........

Mike

I have got hold of this drug motillium, first my wife knows a chemist in Thailand and got me an illicit supply with which I dosed myself. Then my request to get a second opinion from another GI doc at kaiser got me a supply from Canada.

I have been using this drug for 2 months now. It more or less solves all my problems, this means that I do not have eos gastrioenteritis because this drug does not (as far as I know) fix that problem. My problem is therefore motility.

I lead close to a normal eating life now (still gluten-free). I can do things like eat eggs and rice all in the same meal and get it thru my system without experiencing any GERD or need for digestive enzyme supplements. Not 100% normal though, motillium is not as effective as mind altering reglan, so to get extra calories in me I take reglan in the evening when I don't have to think, I then deal with it by sleeping for a couple of hours after eating. This then means that I can't sleep if I try to sleep at a normal time so go to sleep in the night really late!

[hillyb6]

where did you find the rates on teh eos of high>4

my daughter was just biospy her was more than 75 just cant seem to find much about how they determine the severity of it

and and allergy testing doenst alway lend results for teh eos triggers since to get a pos allergy test its a ige antibody and for some resaon alot of the triggers for eos disorders is a non ige response so you can get neg test and stil have gi inflamtion