Newly diagnosed, initial gut healing advice?

[scanlanmd]

Hello all,

I recently received positive blood tests indicative of celiac disease (awaiting endoscopy referral). 

It’s taken me nearly a decade to get this diagnosis and it’s a weight off my shoulders (female/30).

I have chosen to go gluten free immediately, with the pandemic prolonging surgeries, etc. My doctor told me it may be a significant wait to see a gastroenterologist.

I have been scouring the net trying to find people’s INITIAL stages of healing their leaky guts, but, no one seems to talk about it.

I am on a myriad of vitamins, l glutamine, probiotics, etc. having all these new things in my body is certainly foreign to my body. 

I am wondering if any of you could speak to your initial stages of healing your leaky gut with celiac disease. How long until you felt better, what symptoms you experienced during the process, if you “felt worse” before you felt better, etc.

THANK YOU.

[GodsGal]

6 hours ago, scanlanmd said:

Hello all,

I recently received positive blood tests indicative of celiac disease (awaiting endoscopy referral). 

It’s taken me nearly a decade to get this diagnosis and it’s a weight off my shoulders (female/30).

I have chosen to go gluten free immediately, with the pandemic prolonging surgeries, etc. My doctor told me it may be a significant wait to see a gastroenterologist.

I have been scouring the net trying to find people’s INITIAL stages of healing their leaky guts, but, no one seems to talk about it.

I am on a myriad of vitamins, l glutamine, probiotics, etc. having all these new things in my body is certainly foreign to my body. 

I am wondering if any of you could speak to your initial stages of healing your leaky gut with celiac disease. How long until you felt better, what symptoms you experienced during the process, if you “felt worse” before you felt better, etc.

THANK YOU.

Hi! I am not a medical professional. Just a fellow traveller on this journey.

This pandemic has messed up quite a bit of things. I can understand and appreciate your wanting to go gluten free right away. One thing to take into consideration is that if you decide to get an endoscopy, you will need to do a gluten challenge in which you eat the equivalent of two slices of wheat bread per day for two weeks. Otherwise you might get a false negative.

I got diagnosed two years ago. Honestly, it was quite a shock. I knew that I was having elusive abdominal pain, and that I had some food intolerances. But I was not expecting celiac disease.

I felt really overwhelmed at the beginning. I tell people that it felt like I was trying to get a drink of water from a fire hose. 

I didn't have obvious physical symptoms. And the symptoms I did have, I had lived long enough with them that I just thought they were normal. So for me, it was more like discovering what had gotten better. 

It did take my body some time to adjust to the new diet. At first I felt hungry a lot of the time. But as I adjusted, that went away. Then I noticed that I was not bloated anymore, and my bathroom didn't smell like an open sewer. Then my hands lost the itchy rash. 18 months in I realized that I can eat cucumbers and a little bit of raw broccoli. Dairy seems to be out for good. And, oats are as well.

I understand that it can take 2 years for the gut to heal. So it will be interesting to see how my numbers are trending when I go back next week

This article is a good resource. 

It can be challenging to find all the places that gluten hides. Make sure to look for it in things like toothpaste, soaps, shampoo, conditioner, dish detergent, laundry detergent, cosmetics, pet food, etc. Also don't forget to change your toothbrush and replace the toaster.

[Scott Adams]

I recall feeling much better within days or a couple of weeks of going gluten-free, but the leaky gut issues took me almost 2 years to resolve. The more strict your gluten-free diet is, the faster your gut should heal, and it's safe to say that, given the time period of the mid-90's of my diagnosis, it was quite hard to figure out the diet, as there just wasn't a lot of information, understanding, or GF products available at that time.

[scanlanmd]

On 2/9/2022 at 12:49 AM, GodsGal said:

Hi! I am not a medical professional. Just a fellow traveller on this journey.

This pandemic has messed up quite a bit of things. I can understand and appreciate your wanting to go gluten free right away. One thing to take into consideration is that if you decide to get an endoscopy, you will need to do a gluten challenge in which you eat the equivalent of two slices of wheat bread per day for two weeks. Otherwise you might get a false negative.

I got diagnosed two years ago. Honestly, it was quite a shock. I knew that I was having elusive abdominal pain, and that I had some food intolerances. But I was not expecting celiac disease.

I felt really overwhelmed at the beginning. I tell people that it felt like I was trying to get a drink of water from a fire hose. 

I didn't have obvious physical symptoms. And the symptoms I did have, I had lived long enough with them that I just thought they were normal. So for me, it was more like discovering what had gotten better. 

It did take my body some time to adjust to the new diet. At first I felt hungry a lot of the time. But as I adjusted, that went away. Then I noticed that I was not bloated anymore, and my bathroom didn't smell like an open sewer. Then my hands lost the itchy rash. 18 months in I realized that I can eat cucumbers and a little bit of raw broccoli. Dairy seems to be out for good. And, oats are as well.

I understand that it can take 2 years for the gut to heal. So it will be interesting to see how my numbers are trending when I go back next week

This article is a good resource. 

It can be challenging to find all the places that gluten hides. Make sure to look for it in things like toothpaste, soaps, shampoo, conditioner, dish detergent, laundry detergent, cosmetics, pet food, etc. Also don't forget to change your toothbrush and replace the toaster.

GREATLY appreciate your response!! I have definitely noticed my headaches/fatigue decreasing after eating, general alertness coming back. But, yes, the probiotics/kefir and everything else I’m putting in my body have definitely highlighted my bloating, LOL. 

[scanlanmd]

15 hours ago, Scott Adams said:

I recall feeling much better within days or a couple of weeks of going gluten-free, but the leaky gut issues took me almost 2 years to resolve. The more strict your gluten-free diet is, the faster your gut should heal, and it's safe to say that, given the time period of the mid-90's of my diagnosis, it was quite hard to figure out the diet, as there just wasn't a lot of information, understanding, or gluten-free products available at that time.

Yes, 2 years is what I have been noticing here on the forum as a standard parameter! Thank you for your insight!! I am going to be quite rigid with the process, so I am hoping that that will quicken the process, 🤞

[Scott Adams]

It is very doubtful that red wine would have any gluten in it (I do know about the wheat paste used to make barrels, which has never been shown to make gluten detectable in wines), and it is more likely a reaction to histamine levels, which can be high. Many people have a "wine intolerance" due to this:

https://pubmed.ncbi.nlm.nih.gov/8005453/#:~:text=Histamine levels ranged from 3,Histamine is causing wine intolerance.