What did your recovery look like?

[Jean Carrithers]

Hello, recently diagnosed, been gluten free for 2 months but having some complications.  I have a follow-up scheduled with a doctor, but wanted to know what recovery looked like for other people, especially people who had significant symptoms when diagnosed.  Prior to being diagnosed I was very ill (lost a lot of weight and was having a lot of trouble eating and digesting food).  How long did it take your physical symptoms to lessen, to disappear?  Was your recovery fairly linear, or were there occasional set-backs? 

[John117]

Hi Jean,

I lost 25 lbs last October-December and was super ill.

Like bed bound thought I was dying.

Had pretty much let my guts get overrun by bacterial imbalances which happens a lot when your guts are extremely adverse to gluten. I'd recommend working with someone if possible to help heal your GI systems while you jump into your new lifestyle. 

I went gluten free back in Jan/Feb.

Then I found out over the course of the next 6-8 months that things I would periodically introduce - even certain painkillers - contain barley or wheat.

So it is a long and frustrating journey at times, but the one thing I always try to remind myself is that I am far better now in comparison to where I was. And the little setbacks can at times be very defeating, especially after multiple setbacks, but like I said, you learn as you go. As a result, I can eat safely and without the same anxiety as often as I used to, and even if I do have something that doesn't agree with me I manage to bounce back a bit faster. 

You got this. 

[Jean Carrithers]

Thank you John117!  I'll keep that in mind, that I am better now than I was before even if I am still feeling sick.  It might be a long journey, but you're right I can get through this.  Good luck on your own healing, it means a lot for me to hear from others who understand  

[Scott Adams]

For me the very worst symptoms like diarrhea, seemed to improve within a few weeks of going gluten-free, but I also had to eliminate 5-6 other non-gluten foods for a couple of years as well, so it wasn't until the 2-3 year mark that I was feeling nearly normal again. After ~3 years I was able to add back many of the non-gluten foods that bothered me before, like casein, corn, chicken eggs, etc.

[dixonpete]

I figured out I was celiac in June 2008 after two years of increasingly severe illness. Sick many times per day, plus I was dealing with a diagnosed case of ulcerative colitis at the time.

Once I cut out gluten the diarrhea stopped immediately, but I was still dealing with mucus in my stool (grossest thing ever) and still too many bowel movements. It was a full couple of years before I felt any kind of rightness in my gut. During those years I was learning the ropes of being celiac. I probably got glutened 10 times.

Celiac was one thing, the colitis was another. Flares came and went but in 2018 things really came to a head and I was seriously considering surgery. Luckily I figured out at the last moment I figured out that meat was the trigger. Chicken, pork, beef, protein powder would make me bleed and scream in the shower with the radio cranked up. Once I cut that out as well life was a lot better, but there was still a low level continuous gut inflammation no matter what I ate.

[Scott Adams]

In hindsight I could have healed much faster, but would eat out often because I lived in San Francisco and worked downtown. In the mid 90's restaurant staff was nearly clueless, and my questions around whether something had wheat in it or could be contaminated probably flew by them during a busy lunchtime rush. It took me while to figure out where and when I could eat out, how to order, etc. Never go during busy times is my first rule, but now I also take GliadinX before I eat (and they are a sponsor here).

[dixonpete]

After one particularly painful experience where I tried really hard to negotiate with a restaurant and still got deathly sick, I decided putting my health on the line relying on people who didn't have the same interest as me didn't make sense. I think I ate in one restaurant over the next 10 years after that.

[Claudia DeMeritt]

I am scheduled for an endoscopy on 12/22/22.  So far in my research I have been unable to find information regarding how long does the physical recovery take?  I am planning flying to Texas on 12/24 and would like to have some idea of what to expect.

 I think I have been following a gluten-free regime and then, WHAM, I get uncontrollable diarrhea that lasts for 2-3 days.  Any thoughts?  My mom was diagnosed at a later age and I have had the blood test that showed a value of 78.

Appreciate anything you folks have to share.

 

[trents]

Welcome to the forum, Claudia!

First, the value of 78 you give is meaningless unless you tell us two things. One is, exactly which celiac antibody test does it apply to. There are a number of antibody tests that can be run to diagnose celiac disease. The most common one ordered is the tTG-IGA. The other thing we need to know is the reference range the lab used for that test.s There is no industry standard for ranges with regard to these antibody tests. Each lab uses their own ranges.

Second, you should not begin a gluten free diet until all testing is done, including the endoscopy/biopsy. If you institute a gluten free diet before all testing is complete you risk invalidating the testing since healing would have begun. The endoscopy/biopsy serves the purpose of checking for damage to the villi that line the small bowel caused by the inflammatory reaction to gluten characteristic of celiac disease. The Mayo Clinic guidelines for the pretest gluten challenge heading into an endoscopy/biopsy is the daily consumption of two slices of wheat bread (or the gluten equivalent) for at least two weeks prior to the procedure. Unfortunately, many physicians neglect to tell their patients this or may not know enough about celiac disease to do so.

[Scott Adams]

  On 12/1/2022 at 3:24 PM, Claudia DeMeritt said:

I am scheduled for an endoscopy on 12/22/22.  So far in my research I have been unable to find information regarding how long does the physical recovery take?  

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You will be within a few hours after the procedure, and be sure to arrange for a ride home.