Length of time gluten free before results

[happyhedgehog]

Hello, I'm not sure if I have Celiac or another form of gluten free intolerance, and I'm hoping to get some advice.

I have talked to my doctors but they haven't been super helpful. I got the blood test for Celiac which was negative, but my understanding is that isn't super accurate. I know that I could get the biopsy but I have pretty extreme anxiety about surgery and I'd prefer to just try eliminating gluten.

I have a parent with some form of glutem intolerance, we aren't sure if it is Celiac or a different form, but it is in my family.

Several years ago, I started having constipation and abdominal pain that I couldn't figure out the result of. Went to doctors who suggested different things. I tried the low fodmap diet, which didn't work. I think I didn't eat any gluten during that time, and it didn't seem to help, so does that mean it's not gluten? Or maybe I was not being strict enough. 

Eventually I found if I eat a certain amount of fruit and vegetables along with magnesium supplements, my constipation is considerably better (with some exceptions).

Lately I've been having abdominal pain every morning, and often also in the evening. 

I also deal with chronic fatigue, and frequent respiratory illness which often lead to sinus infections. 

I feel like it's worth trying to eliminate gluten, but I'm wondering, how long before I should expect to have at least some symptoms subside? In other words, if I try it for say a month and have no improvement can I assume its probably not gluten? I had awful experiences with my other elimination diets where I saw no improvements and it just stressed me having to avoid food so I'm worried about that happening again. 

Also, has anyone else with Celiac had similar symptoms to mine? I'm not sure if only having abdominal pain in the morning and evening could possibly be a Celiac symptom. 

Thank you for reading my very long post!

[trents]

Welcome to the forum, @happyhedgehog!

First, let me clean up some terminology for you. Gluten intolerance is synonymous with celiac disease. Gluten sensitivity is generally not used of celiac disease but is short for NCGS (Non Celiac Gluten Sensitivity). 

When you had the blood test done for celiac disease were you at the time attempting to eat gluten free?

Also, the biopsy checking for celiac disease is not "surgery," it is a "procedure." Generally (at least in the USA), it is performed using conscious sedation. You would not feel anything or at least not remember feeling anything. I have had it done several times.

If you were eating truly gluten free, I would think there would be some improvement within a month. But it is harder to eat truly gluten free than most people think because of the many ways gluten is hidden in the food supply. Studies have shown that most people who say they are eating glute free are actually observing a lower gluten diet. But it is also possible there is another medical problem going on. Have you been checked for things like IBS or Crohn's? 

Edited December 17, 2023 by trents

[Sheila G.]

I had Gluton Problems when I had the civid in February 2023.  Right after that I was having stomach problems when eating.  Started changing my diet with gluten free food.  I never felt nausea though.  I do see a nutritionist monthly, was eating a lot of gluten-free Amy's Meals and just found out it has loads of carbs, like 53g in the 2 enchiladas I love.  So now I just purchased online at justmeat.com and it has meats to buy with only 1-10maybe of carbs.  There is also a website called bistromd.com that has Meals.  I hope that helps..

[trents]

Amy's dinners are loaded with sodium as well.

[Scott Adams]

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.