Steatorrhea getting worse after stopping gluten?

[Emmatenerife]

Hi everyone. 

So i try to make it quick. I have had digestive problems all my life. 

1 year ago i stopped sugar and became vegan i felt significantly better. 

Continuing my holistic health journey i stopped my hormonal birth control after 15 years. 

I developed steatorrhea. Firstly only with periods and then 3rd period it came and hasn't left since. 

Done many tests and nothing hugely obvious with an answer, slightly raised antibodies and indirect bilirubin ( which actually went down 1 week after stopping gluten) So research mainly done by me. (i live on an island with limited resources) i came to gluten. 

Stopped and within 2 days all bloating was gone. When before i used to look pregnant most nights. 

However a month on and my digestive system has gone mad. I started to get diarrhea (rather than just steatorrhea) and feel really weak, shaky. Had some better days where i felt amazing and full of life. But then much much worse days. 

I have kept a food diary with no pattern whatsoever. Only possible similarities is the day before the bad diarrhea/steatorrhea i had a tiny bit more oil ( drop of coconut oil/ or peanut butter) but i am clutching at straws here to see a pattern. 

Is it possible to get worse before better? I used to eat SOOOO much gluten everyday. Muesli, bread, toast, pasta everyday. So i know it's going through a change. 

But it's been 1 month and it's getting worse not better. So i really don't even know if i am on the right track still. 

So frustrated. I don't know what to eat. 

I am wondering if i should try no fruit also. 

Thanks in advance 

[Scott Adams]

Welcome to the forum. 

Before going gluten-free it is best to do a blood test for celiac disease, but it sounds like you've already gone gluten-free, and have found that it may be causing your symptoms. 

One of the most common symptoms of celiac disease is malabsorption fat, vitamins, minerals (iron), and other nutrients, which can cause steatorrhea and other issues.

Has your diet been 100% gluten-free? If you eat at restaurants this may not be the case. If you get trace amounts of gluten regularly then your symptoms may continue, especially if you have celiac disease. You may still have non-celiac gluten sensitivity (no test for this yet), even if you don't have celiac disease, but the treatment of a gluten-free diet is the same.

If your symptoms are caused by gluten sensitivity, then they should improve over time on a 100% gluten-free diet, and you may need to take a good multi-vitamin and mineral complex to help you recover.

[Emmatenerife]

13 minutes ago, Scott Adams said:

Welcome to the forum. 

Before going gluten-free it is best to do a blood test for celiac disease, but it sounds like you've already gone gluten-free, and have found that it may be causing your symptoms. 

One of the most common symptoms of celiac disease is malabsorption fat, vitamins, minerals (iron), and other nutrients, which can cause steatorrhea and other issues.

Has your diet been 100% gluten-free? If you eat at restaurants this may not be the case. If you get trace amounts of gluten regularly then your symptoms may continue, especially if you have celiac disease. You may still have non-celiac gluten sensitivity (no test for this yet), even if you don't have celiac disease, but the treatment of a gluten-free diet is the same.

If your symptoms are caused by gluten sensitivity, then they should improve over time on a 100% gluten-free diet, and you may need to take a good multi-vitamin and mineral complex to help you recover.

Thank you for your reply. I did do a test, however it wasn't a clear answer. They said it didn't show up celiac but i still could have it. But the nutritionist said the antibodies were high so stay off it. 

I have cooked all my own food for sure without a trace. And i had some good days. My bloating has gone totally after 2 days. However my steatorrhea has turned into diarrhea sometimes. Especially if i have Any fat ( tiny drop of coconut oil or peanut butter) 

Whereas before i was eating so much oil. So it seems to be getting worse if i look at it that way. 

[Scott Adams]

If you can get a copy of that test and share the results here, along with the reference ranges for a positive mark, we could offer you more insight. 

If you do have celiac disease it can take up to 2 years to fully recover, but only if you are 100% gluten-free (usually less time, but this is the average).

This article may be helpful:

 

[Emmatenerife]

40 minutes ago, Scott Adams said:

If you can get a copy of that test and share the results here, along with the reference ranges for a positive mark, we could offer you more insight. 

If you do have celiac disease it can take up to 2 years to fully recover, but only if you are 100% gluten-free (usually less time, but this is the average).

This article may be helpful:

 

[Emmatenerife]

40 minutes ago, Scott Adams said:

If you can get a copy of that test and share the results here, along with the reference ranges for a positive mark, we could offer you more insight. 

If you do have celiac disease it can take up to 2 years to fully recover, but only if you are 100% gluten-free (usually less time, but this is the average).

This article may be helpful:

 

I actually wouldn't know what to send, i have endless PDFs. All in Spanish with loads of numbers 😅 i think it's done differently here. 

But they said it's negative for celiac. But i had already been 3 days without gluten before the test. 

10 days after my bilirubin indirect went back to the normal range. 

So it's pretty much guess work here. I can't get an appointment with a digestive doctor for a long time. 

But the malabsorption seems to indicate this as they ruled out liver problems. And since the bloating left that was a positive change. 

It all started After i stopped my contraception after 15 years. 

[Scott Adams]

At the very least it sounds like you may have non-celiac gluten sensitivity, so perhaps continue the diet to see if your symptoms improve, as it does take time.

Also, some celiacs can't tolerate gluten-free oats, so you may want to exclude them, at least until you're sure that they don't cause you any issues.