Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up

Rate this topic

Recommended Posts

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 

Share this post


Link to post
Share on other sites

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. 

Share this post


Link to post
Share on other sites
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 

 

Share this post


Link to post
Share on other sites

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,

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

@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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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,

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
4 4

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×