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Cybele

Esophagitis Or Other?

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I had been wondering if I have Celiac Disease. I have had terrible acid reflux for about 2 years now. I also have had what looks like DH (but am not sure) which now looks like it's subsided. My bother (who is also a doctor) did an organic acid test on me which came back with high levels of yeast. He put me on a wheat, sugar, and dairy free diet for 6 months. The symptoms became much less but still had "DH". I went back on gluten in order to get tested. I had the Celiac panel blood test which came back negative and had the Endoscopy today. The doctor didn't think it was Celiac but saw alot of irritation in the esophagus. He took several biopsies but won't know until next week. My question is if it esophagitis, why the sensitivity to gluten?

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How long were you back on a gluten diet? You needed to be back on gluten for about 3 months and consuming it multiple times a day. How did your body react to adding gluten back in for the challenge? How many biopsies did the doctor take, it should have been at least 5 or 6. Damage to the villi can only be seen with the biopsies and even then damage can be patchy and be missed. The blood tests have a high rate of false negatives also. Do go on a strict gluten free diet now that the tests are done. You don't need to wait on the results. Since you have already seen some relief wheat free you may be surprised how much relief you get when you drop the rest of the gluten from your diet.

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Esophagitis - irritation and or damage of the esophagus.

The endoscopy showed an irritated/damaged esophagus. The biopsies will show what type of damage. Do not panic as this is only one scenario...

If the biopsy show eosinophils (not common white blood cell associated with an allergic type response), it could be Eosinophilic Esophagitis (EE). Some times the blood cells are embedded into the tissue and not as easily seen during the endoscopy.

Not a lot is known about EE. Some desribe it as asthma of the throat. In most cases an elimination diet is started. Allergy testing is done first, but may not identify any allergies. Some foods will be identified as "triggers" for the damage. This is where gluten can be a trigger for EE. You may have realized eating gluten makes you sick ~ but not from Celiac. Or you can be like my daughter and have both Celiac and EE. It could be damage from severe GERD.

Let us know how the test results turn out. My thoughts and prayers are with you.

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Esophagitis - irritation and or damage of the esophagus.

The endoscopy showed an irritated/damaged esophagus. The biopsies will show what type of damage. Do not panic as this is only one scenario...

If the biopsy show eosinophils (not common white blood cell associated with an allergic type response), it could be Eosinophilic Esophagitis (EE). Some times the blood cells are embedded into the tissue and not as easily seen during the endoscopy.

Not a lot is known about EE. Some desribe it as asthma of the throat. In most cases an elimination diet is started. Allergy testing is done first, but may not identify any allergies. Some foods will be identified as "triggers" for the damage. This is where gluten can be a trigger for EE. You may have realized eating gluten makes you sick ~ but not from Celiac. Or you can be like my daughter and have both Celiac and EE. It could be damage from severe GERD.

Let us know how the test results turn out. My thoughts and prayers are with you.

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Thank you for that explanation. The doctor called me today and he said I have EE and a bacterial infection in my stomach. He wants me to take some antibiotics but I haven't heard of which ones because I am also alergic to Penicilin.

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Big HUGE cyber ((HUGS)) for you!

I have seen the pain EE causes and my heart goes out to you.

If you need to talk, I'm here. There are others here on the board, because gluten is their trigger. My daughter was diagnosed December of 08. She is still avoiding all top 8, gluten, leguemes, milk is all the way to casein, and food dyes. I can help find some food to eat for the extreme elimination diet, if you need.

At first diagnoses she was put on a steroid puffer and Prevacid. To heal the damage from EE and the endoscopy. They are now doing a study, PEERS, in children testing the use of asthma medication. There really isn't much information out in cyberland for EE. Not like the forum here!

Laura

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Big HUGE cyber ((HUGS)) for you!

I have seen the pain EE causes and my heart goes out to you.

If you need to talk, I'm here. There are others here on the board, because gluten is their trigger. My daughter was diagnosed December of 08. She is still avoiding all top 8, gluten, leguemes, milk is all the way to casein, and food dyes. I can help find some food to eat for the extreme elimination diet, if you need.

At first diagnoses she was put on a steroid puffer and Prevacid. To heal the damage from EE and the endoscopy. They are now doing a study, PEERS, in children testing the use of asthma medication. There really isn't much information out in cyberland for EE. Not like the forum here!

Laura

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Thank you Laura. I have been looking for information. There is not as much as the Celiac community. I am getting allergy tested on Thursday and have another appointment with my GI doctor to go over the medications for the bacterial infection. Hopefully he can shed more light on it. He suggested oral steroids but I am not too keen on using steroids. Have you or anyone else out there in cyberland used diet or herbs to treat EE? If so, how successful have you been? I found a site that sells traditional chinese medicine to treat EE and other conditions. Know anything about it? http://hnmrc.net/pd1983722592.html?categoryId=0&gclid=CLfU6dyEwJ8CFVFM5QodaD-63g

I heard that NIH has a clinical trial for EE. I'd like to take part in it but, I am a little bit weary about it, as I don't know much about it or what it entails putting into my body. Any suggestions?

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She was on the oral steroids for a very short time. It was to help heal after the endoscopy with biopsy and the damage caused pre diagnoses.

She went for allergy testing. No allergies found.

Her treatment plan at this point has been elimination diet.

NO

gluten wheat, rye, barley, and oats (probable celiac diagnoses when she was 17 months old)

top 8 allergens peanuts, tree nuts, fish, shellfish, soy, wheat, dairy (casein), & eggs

peas (which later turned into beans (fava, garbonza, pinto, chick peas these were rotation trials)

The directions were vague at the doctor's office to eliminate all the usual suspects for reactions and test rotate (simple form of allergen) back in. Use a food journal to record reactions. This is why I offer my help in advance to you, if this is reccomended to you. (not easy eliminating so many things at once.)

It has tacken over a year to go through trying to rotate anything back in to her diet, and every time we tried something it definately made her sick. She is currently having worse symptoms and her appoint is tomorrow with the specialist. We are suspecting food dyes, and BHT she seems worse when she is in our home for longer periods of time. (this can be an airborn allergen too)

This is just my opinion now....

If this was my illness, I would be doing more research into the herbal medicines. (If you try the herbs only, After the elimination diet, you can't risk the control factor of the elimination diet by adding herbs you may react to.)

I am starting to think that the BLOOD should be examined for EE. (which is why the Chinese herbal treatment is something to consider) There are auto-immune blood disorders. i.e. Idiopathic Thrombocytopenic Purpura where diet restrictions have been shown to have an affect and are part of the reccomended treatment plan.

I do believe EE will be classified as an auto-immune disease soon.

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For the clinical trials....

My daughter is 7.

The trials are usually seperate for pediatric medicine.

From what I have researched so far, it has been asthma medications used for trials. The test study placebo group showed improvement almost as high as the medication group. (Positive thinking always makes a difference!)

Sharing of biopsy samples (Tulane's specimen study).

No one wants their 7 year old being a test subject. It is a hard decision, but if the right oppurtunity for a test study comes along we are open minded to present it to our daughter. It will be her decision to participate or not.

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Did you find out the cause of infection?

Are you being tested for any further viral infections or disease?

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She was on the oral steroids for a very short time. It was to help heal after the endoscopy with biopsy and the damage caused pre diagnoses.

She went for allergy testing. No allergies found.

Her treatment plan at this point has been elimination diet.

NO

gluten wheat, rye, barley, and oats (probable celiac diagnoses when she was 17 months old)

top 8 allergens peanuts, tree nuts, fish, shellfish, soy, wheat, dairy (casein), & eggs

peas (which later turned into beans (fava, garbonza, pinto, chick peas these were rotation trials)

The directions were vague at the doctor's office to eliminate all the usual suspects for reactions and test rotate (simple form of allergen) back in. Use a food journal to record reactions. This is why I offer my help in advance to you, if this is reccomended to you. (not easy eliminating so many things at once.)

It has tacken over a year to go through trying to rotate anything back in to her diet, and every time we tried something it definately made her sick. She is currently having worse symptoms and her appoint is tomorrow with the specialist. We are suspecting food dyes, and BHT she seems worse when she is in our home for longer periods of time. (this can be an airborn allergen too)

This is just my opinion now....

If this was my illness, I would be doing more research into the herbal medicines. (If you try the herbs only, After the elimination diet, you can't risk the control factor of the elimination diet by adding herbs you may react to.)

I am starting to think that the BLOOD should be examined for EE. (which is why the Chinese herbal treatment is something to consider) There are auto-immune blood disorders. i.e. Idiopathic Thrombocytopenic Purpura where diet restrictions have been shown to have an affect and are part of the reccomended treatment plan.

I do believe EE will be classified as an auto-immune disease soon.

I found something in the itunes U you might be interested in. I searched for Eosinophilic Esophagitis. It came up with a lecture called pediatric grand rounds; Eosinophic Esophagitis: Diagnosis and Management. It was for doctors and med school students at U of Arizona so, much of it was over my head but they did mention blood. It is worth looking into.

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Did you find out the cause of infection?

Are you being tested for any further viral infections or disease?

Not yet. It is H Pylori. I meet with my GI doctor tomorrow morning and have allergy testing by another doctor in the afternoon. So, hopefully they can shed some light on this.

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Thank you for the i tune link.

You will probably have a few rounds of medication for the H. Ployri. Once that is taken care of you have a better chance that the EE was caused by the H. Ployri. from what I understand.

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