Non-Celiac Gluten Sensitivity, but a few of my remaining symptoms goes back and forth.

[Golem]

Hello. I am new here. I've figured I'd give this a shot, since I don't seem to be able to get much help from my doctor.

For the past 2 years, I've been struggling like hell. Very rough times. It started over night, I suddently had all the gastrointestinal symptoms possible. Constant nausea, constant dizziness, constant pain, constant acid reflux, constant weird mushy stools (not liquid, not solid, just a big pile with no shape), lots of bloating at night, night sweats and the list goes on... Literally every thing you can imagine. And It's been like that for 2 years! I've went in the hospital multiple times and they've never were able to diagnose me. Everything was always fine and it sickened me. My gastroenterologist made me pass every test possible except a colonoscopy. She prescribed me Amitryptiline 10mg which helped a lot, but I still felt sick.

Winding back to September 8th, I finally passed a colonoscopy, where they found nothing (again). She suggested to keep a food diary and try different foods to see if that helps.

During the colonoscopy prep phase, I had to drink a liquid to empty my bowels- and because my bowels were empty, I seemed to have a great reduction of pain and nausea within barely 48 hours. So I've realized it may actually be related to a food I'm eating. The past weeks previous to that, the pain had increased as well.

On the same day, I decided to not eat gluten for a little while (1 month). Infact, the pain, nausea, dizziness etc did NOT come back. Then I tried to eat 1 piece of cake that was lactose free, and it didn't even take 5 minutes and the symptoms all came back very quickly.

Around end of november and early december, I did unintentionally cheat my diet - and it caused some issues to come back but not as strong and only for a few days.

This week I've been feeling especially good, but VERY VERY tired, like, sleeping 15-16 hours a day tired. Maybe some sort of delayed gluten withdrawal? (if that's even possible).

And even tho I will be fine for some time, there are a few symptoms that comes back, such as:

• Intestinal heat and intestinal irritation feeling (when I put my hand on my stomach, I can feel like the inside is burning/irritated - this never  happened until I became gluten intolerant)
• Bloating (although this one, even if it doesn't seem to go away completely, it seems to decrease very slowly over time).
• Extremely odd mushy stools (this one also seems to improve. This week I've had perfect stools a few times [it's been 2 years since no perfect stools!] but it also seems to vary between constipation, normal, mushy and diarrhea).

So technically, now, I've been on the diet since September 8th. I've eaten gluten to see if it was the culprit on October 10th. I've eaten gluten accidently a few times on end of November / early December.

So now my questions are: In the case of a non-celiac gluten intolerant person, how long is the complete recovery time, on average? It's been a few months (with a few accidental gluten exposures)... Why is it so long- I thought the body didnt damage itself when simply intolerant? Why are my symptoms going back and forth?

Although the most bothersome symptoms such as pain, nausea etc. are gone, there doesn't seem to be an end, or at least, a "back to normal" scenario. 

Thank you.

[trents]

Welcome to the forum, Golem!

Your post is a bit confusing. It is not clear to me whether you have been specifically tested for celiac disease. You cannot arrive at a diagnosis of NCGS unless celiac disease has been conclusively ruled out since the two conditions have a lot of symptoms in common.

A colonoscopy, which scopes only the large bowel and colon, cannot be used to rule out celiac disease. Celiac disease damages the villous lining of the small bowel so to check for that an endoscopy with biopsy needs to be performed. An endoscopy involves inserting an endoscope into the throat and esophagus and down through the stomach into the duodenum/small bowel. Then a biopsy is taken of the small bowel lining which is then sent to a lab for microscopic analysis.

Usually, if celiac disease is suspected, before an endoscopy/biopsy is done the physician will order a blood draw to check for antibodies produced by the inflammation of the small bowel lining caused by celiac disease. Have you had this done?

All this to say I am not convinced the right testing has been done on you to rule out celiac disease.

Although we know of some cases where people with celiac disease or NCGS have experienced a period of remission, these diseases invariably come back over time. The only antidote for either disease is life long abstinence from gluten.

[Golem]

  On 1/17/2022 at 3:20 AM, trents said:

Welcome to the forum, Golem!

Your post is a bit confusing. It is not clear to me whether you have been specifically tested for celiac disease. You cannot arrive at a diagnosis of NCGS unless celiac disease has been conclusively ruled out since the two conditions have a lot of symptoms in common.

A colonoscopy, which scopes only the large bowel and colon, cannot be used to rule out celiac disease. Celiac disease damages the villous lining of the small bowel so to check for that an endoscopy with biopsy needs to be performed. An endoscopy involves inserting an endoscope into the throat and esophagus and down through the stomach into the duodenum/small bowel. Then a biopsy is taken of the small bowel lining which is then sent to a lab for microscopic analysis.

Usually, if celiac disease is suspected, before an endoscopy/biopsy is done the physician will order a blood draw to check for antibodies produced by the inflammation of the small bowel lining caused by celiac disease. Have you had this done?

All this to say I am not convinced the right testing has been done on you to rule out celiac disease.

Although we know of some cases where people with celiac disease or NCGS have experienced a period of remission, these diseases invariably come back over time. The only antidote for either disease is life long abstinence from gluten.

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I did had an endoscopy early on, about 2-3 months after the appearance of symptoms. Nothing was found.

When I talked to my gastroenterologist about my symptoms improvement when avoiding gluten, she jumped on the "non-celiac gluten sensitvity" conclusion. I've passed so many tests the past 2 years, there's no way they did not find an allergy. My gastroenterologist was 100% positive on the non-celiac gluten sensitivity diagnosis.

I understand that I may have this for my whole life, but why is it only partially improving and not completely resolving all of my symptoms? Sure, I'm happy that my pain is gone, so is my constant nausea etc., but I still carry a few symptoms which tends to come back and go away, even when abstaining from eating gluten. It's just odd to me.

[trents]

Thank you for the additional information.

Did you begin gluten free eating prior to the endoscopy? If so, that would likely invalidate the results.

As far as the recurrence of some of the symptoms, I would guess some gluten has found its way into your diet that you are not aware of or you have developed other food intolerances that do not involve gluten.