Awol follow up

[Awol cast iron stomach]

Hello everyone,

Thank you for the many months of support. I was unable to get through the 14 day gluten challenge. I made it 6 days stopped due to d and all my other symptoms and dehydration issues. Then I had to go gluten-free a few days ate one more day of gluten. So I was unable to do 14 days. They did both colonoscopy and endoscopy. They said no signs of celiac but they said they were shocked to find Barretts and gastritis of stomach. They were shocked to find it since what they found did not match my symptoms. I had reflux at the end of my daughters pregnancy 12 years ago but did not realize I am/was fluxing. It appeared standard pregnancy related and then gone shortly  after delivery .

While I am not celiac I may still visit your forum because my husband, my children, and myself know gluten is bad for me. I bloat 45 minutes after consuming in addition to many symptoms. I tried to search if people with Barretts have an association with NCGS but was unable to find anything.

So thank you for your time and knowledge during my challenge. I am off on my Barretts journey and hoping I remain without dysplasia. I will remain gluten free because despite no damage found -gluten causes symptoms for me.

My best to all- wish me luck.

Awol

[ironictruth]

On 10/20/2016 at 9:29 PM, Awol cast iron stomach said:

Hello everyone,

Thank you for the many months of support. I was unable to get through the 14 day gluten challenge. I made it 6 days stopped due to d and all my other symptoms and dehydration issues. Then I had to go gluten-free a few days ate one more day of gluten. So I was unable to do 14 days. They did both colonoscopy and endoscopy. They said no signs of celiac but they said they were shocked to find Barretts and gastritis of stomach. They were shocked to find it since what they found did not match my symptoms. I had reflux at the end of my daughters pregnancy 12 years ago but did not realize I am/was fluxing. It appeared standard pregnancy related and then gone shortly  after delivery .

While I am not celiac I may still visit your forum because my husband, my children, and myself know gluten is bad for me. I bloat 45 minutes after consuming in addition to many symptoms. I tried to search if people with Barretts have an association with NCGS but was unable to find anything.

So thank you for your time and knowledge during my challenge. I am off on my Barretts journey and hoping I remain without dysplasia. I will remain gluten free because despite no damage found -gluten causes symptoms for me.

My best to all- wish me luck.

Awol

I have seen articles linking celiac to Barretts and esophagitis.  I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's  and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient did not have actual acid reflux symptoms.

Not sure if you ever did antibody testing for celiac, but sounds like you certainly want to avoid gluten. 

[Awol cast iron stomach]

Hi Ironic Truth,

Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse.

My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself.

I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it.

I did see one abstract, I can't get my hands on the full article as you stated their is a link:

Dig Dis Sci. 2005 Jan;50(1):126-9.

Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus).

Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M

Open Original Shared Link

So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums.

Good luck with you Boyfriend he is lucky to have you looking out for him.

[GFinDC]

Hi AWOL,

Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be erring on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.

Open Original Shared Link

[Awol cast iron stomach]

Thanks for replying gluten-free in DC. I know I failed to finish and I readily admitted it to them. I also told them initially I wasn't willing to do the challenge that I'd prefer to be gluten-free and wait for technology to catch up with me. I knew however they would not order endoscopy if I did not do a challenge. 

I'll take your sage advice and consider myself Celiac. I considered myself on the spectrum for 3 years.

I was perplexed the GI Dr  said that celiac was the least of my concerns now that Barretts was found. I asked if she was sending the results to the celiac specialist I was seeing, she responded why would I do that? You're not celiac. My sarcastic answer was because she was the referring physician, but I figured the fight was not worth the stress that could aggravate if I have non symptomatic gerd. Surprised as this is a large metropolitan university medical hospital.

She did however tell my husband while I was still out from anesthesia if she really thinks she has a problem with gluten tell her not to eat it. That was my only validation.

My insurance company wont cover the next test/ procedure she suggests for Barretts . So my husband and I realize the trip to the city for specialists hit a dead end. now  I need to find a different local GI for Barretts monitoring. I feel like this was an exercise in futility however I guess I am fortunate the Barretts was discovered as I have children . And the Barretts will require additional positive lifestyle practices that can aid the celiac too.

Thank you