Newly tested

[JCS]

Have been experiencing symptoms since September 2019. Symptoms gradually have gotten worse since then. Had endoscopy this past Tuesday with the doctor saying evidence of celiac awaiting results of biopsy. After being told possibly that I have celiac I began trying to remove gluten from my diet. Over the past two days I can not eat anything without becoming ill. I have severe bloating almost 24 hours, light headed and occasionally dizzy, joint pain all day etc. Is this normal after removing gluten? Is there anything I should focus on eating or just eat very little for a while? Any help is appreciated. 

[trents]

There is often a withdrawal experience immediately after going gluten-free. 

Focus on eating simple, fresh foods instead of processed things. Fresh meat, vegetables and fruit. Avoid spices except maybe salt. For the time being, avoid oats and dairy until you start to experience substantial healing. About 10% of celiacs react to oat protein the same way they do the gluten in wheat, barley and rye. CMP (cow's milk protein) commonly causes an inflammatory response in the small bowel similar to gluten. It's the casein component, not the sugar as in lactose intolerance. However, the whey protein component is okay if you want to use whey protein.

I would also start taking an adult level gluten free multivitamin and a gluten free high potency B-complex. Because of the damage to the small bowel villi, celiacs don't absorb nutrients from food well. Costco is a great source for gluten free vitamins and supplements.

Edited April 12, 2021 by trents

[Scott Adams]

Welcome to the forum! 

Did you also get a blood test for celiac disease? The normal protocol would be a blood test, followed by a biopsy if the blood test results indicate possible celiac disease. I only mention this because I assume that you were eating gluten daily until you did the biopsy, and if the biopsy isn't definitive you will likely wish you had done a blood test before going gluten-free.

[JCS]

1 hour ago, Scott Adams said:

Welcome to the forum! 

Did you also get a blood test for celiac disease? The normal protocol would be a blood test, followed by a biopsy if the blood test results indicate possible celiac disease. I only mention this because I assume that you were eating gluten daily until you did the biopsy, and if the biopsy isn't definitive you will likely wish you had done a blood test before going gluten-free.

Thanks for response.  Had endoscopy biopsy last Tuesday. Came back celiac can not be ruled out. Doctor called and had me do blood tests today. Sounds like I did things backwards? I am pretty much at the point of not being able to eat anything. 

17 hours ago, trents said:

There is often a withdrawal experience immediately after going gluten-free. 

Focus on eating simple, fresh foods instead of processed things. Fresh meat, vegetables and fruit. Avoid spices except maybe salt. For the time being, avoid oats and dairy until you start to experience substantial healing. About 10% of celiacs react to oat protein the same way they do the gluten in wheat, barley and rye. CMP (cow's milk protein) commonly causes an inflammatory response in the small bowel similar to gluten. It's the casein component, not the sugar as in lactose intolerance. However, the whey protein component is okay if you want to use whey protein.

I would also start taking an adult level gluten free multivitamin and a gluten free high potency B-complex. Because of the damage to the small bowel villi, celiacs don't absorb nutrients from food well. Costco is a great source for gluten free vitamins and supplements.

Thanks, started b vitamin today.

[Scott Adams]

Hopefully you were not gluten-free for very long before your blood test, as it will lower your values. Please share the blood test results when you get them, but it sounds to me like you already have your answer, and will be avoiding gluten.