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Hello  people 

I have been gluten free for two years however I suffer from GERD latest Was Grade B then it was healed then the doctor said it takes time if ,y esophagus will be inflamed again BUT  currently I am on anti-Acid but, whether  i stopped it or not I have a SHARP pain in my esophagus and it gets more pain and sharp once i eat and swallow I felt it is like very tight that I can not breath well then I cough and I drink water just to pass the food down and even if I eat soft things like yogurt the pain is the same I am very worried any advice 

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I would ask your doctor to refer you to a gastroenterologist at the hospital. Are your coughs very violent, especially when you are eating? If so I suffered for 20 yrs and struggled to get a diagnose. After barium meal x rays, mamonomatries, endoscopys and many other forms of investigations I was told I had something called Nutcracker Oesophagus which is a very rare illness. Or there is another version which is the opposite of my problem which is called Achalasia. If you go onto face book and join a group called Achalasia it will tell you a bit more. Unfortunately my problem is so rare I have only found one other person with my illness. 

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1 hour ago, Ruth w said:

I would ask your doctor to refer you to a gastroenterologist at the hospital. Are your coughs very violent


I am sorry to hear for such condition I know it sucks but we have no hand on this 

My cough are violent but i try to keep them low bcz it worses the pain sometimes when am walking i get sharp pain like i am having a heart attack lol 

I would not think that I have the same condition as you  as no one in my family had my problems and i am still young 23 

 

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Waleed,

Cyclinglady beat me too it.

27 minutes ago, cyclinglady said:

Has EOE been ruled out?  

https://apfed.org/about-ead/egids/eoe/

Here is a good thread on EOE.

https://www.celiac.com/forums/topic/119702-eoe-and-celiac-or-eoe-or-celiac/

I hope this is helpful but it is not medical advice.

“Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2: 7 

Posterboy by the grace of God,

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18 hours ago, Ruth w said:

I would ask your doctor to refer you to a gastroenterologist at the hospital. Are your coughs very violent, especially when you are eating? If so I suffered for 20 yrs and struggled to get a diagnose. After barium meal x rays, mamonomatries, endoscopys and many other forms of investigations I was told I had something called Nutcracker Oesophagus which is a very rare illness. Or there is another version which is the opposite of my problem which is called Achalasia. If you go onto face book and join a group called Achalasia it will tell you a bit more. Unfortunately my problem is so rare I have only found one other person with my illness. 

Ruth, 

I am so glad you shared your story.  I had never heard of Nutcracker Esophagus.  I Googled it.    Lucky that you finally found a doctor who could diagnose you.  

Edited by cyclinglady
Typos, grammar

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5 hours ago, cyclinglady said:

Ruth, 

I am so glad you shared your story.  I never hear of Nutcracker Esophagus.  I looked it up.  Lucky that you finally found a doctor who could diagnose you.  

I would advise this lovely young 23 yr old to get referred asap, as it took so long for me to get diagnosed it is wise to start the jouney early. As there is no cure, but there are tablets that help soothe it but nothing that stops it. As I said it could be Achalasia. With Nutcraker I have been told that I can choke to death, but it is all about learning to deal with your coughing, standing up to let your food go down, making sure you chew your food lots or put it in a blender.  There are so many other things to try to help, the doctor can only prescribe Nifidine, which is for high blood pressure but it seems to make some difference.

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@Waleed 

Why have you been gluten free for two years?  Do you have celiac disease?  Have you been retested to determine diet compliancy?  Have you consulted with more than one Gastroenterologist?  

When you have one autoimmune disorder, you can develop more and often those are not easily treatable, like celiac disease.  

Edited by cyclinglady

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yes, I do have auto immune disease. No it isnt the disease you suggested with my osophigus. It is defo Nutcraker, as it was confirmed when I had my mamonomatry.

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2 hours ago, cyclinglady said:

@Waleed 

Why have you been gluten free for two years?  Do you have celiac disease?  Have you been retested to determine diet compliancy?  Have you consulted with more than one Gastroenterologist?  

When you have one autoimmune disorder, you can develop more and often those are not easily treatable, like celiac disease.  

Yes I have celiac disease and the doctor said its refactory celiac because its never below (MARSH I) .

How do you mean by determine compliancy is it by endoscopy or blood tests? 

 

Thank you

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A Marsh 1 at 2 years into the diet!  Oh no!  Refractory is considered rare and is often over diagnosed.  Often hidden amounts of gluten is getting into the diet.  Have you tried the “Fasano” diet?  Dr. Fasano is a leading US celiac expert at MassachusettsGeneral/Harvard University in Boston.    I would definitely do this diet which is basically no processed foods) for a few months before accepting a refractory type 1 diagnosis.  Also never eat out at restaurants during this time or until you have healed.  

Learn more about the “Fasano” diet and hidden gluten here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Edited by cyclinglady

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Ruth,

On 12/12/2018 at 8:41 AM, Ruth w said:

yes, I do have auto immune disease. No it isnt the disease you suggested with my osophigus. It is defo Nutcraker, as it was confirmed when I had my mamonomatry.

Many "itis" disease overlap. .. meaning simply inflammation . .in medical terms.

You might have EoE and Nutcracker or Eoe develops into Barrett's or Nutcraker.

did you say you are now taking a PPIs?

You might try transitioning to an H2 inhibitor if you are .. ..like Ratindine (Or other "Idine") class of drugs.

see here how B-Vitamins might help your esophagus problems by helping control inflammation aka "itis" in the body including the esophagus.

https://www.wellnessresources.com/studies/b-vitamins-and-esophageal-adenocarcinoma-barretts-esophagus-and-reflux-esop

https://www.ncbi.nlm.nih.gov/pubmed/2084620

I have seen this help my friend who has EoE.

You might also have your Iron levels checked it often is low in EoE patients.

Here is a good thread on IDA.

https://www.celiac.com/forums/topic/119240-diagnosed-with-ttg-iga-level-of-128-three-days-ago-trying-to-conceive-or-should-i-hold-off/

read the whole thread when you get a chance. ... it is kind of long so you can skip over it for now but see the above links on the esophagus and B-vitamins helping inflammation in the body possibly including the esophagus too!

I hope this is helpful but it is not medical advice.

good luck on your continued journey.

As always "Consider what I say; and the Lord give thee understanding in all things." this included.

2 Timothy 2:7

Posterboy by the Grace of God,

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I only had nother endoscopy 2 weeks ago, so I know I have not got this EoE disease.

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