Everything Worse After Celiac

[PrinceTrent]

Hi everyone,

I am in my 30s and new to Celiac. I was diagnosed a few weeks ago. Apparently the my villi are quite damaged. I had been having pretty bad abdominal pain for a while and went to see a specialist. Honestly I was relieved when I got the diagnosis. It was an answer. That’s when things got worse.

There is no gluten in our house. I haven’t eaten out anywhere. Yet I have felt progressively worse. Every morning I have horrible stomach pain. A week of horrible stomach pain changed to stomach pain and diarrhea the next week. It seems like the problem is getting worse instead of better. Has anyone else experienced this? Could this just be transition to a new diet, and I need to be more gentle with myself?

[trents]

Welcome to the forum, Prince Trent!

A couple of thoughts here. You may be going through gluten withdrawal. Gluten has addictive qualities similar to opiates.

I also wonder if you have developed an intolerance/sensitivity to one or more non gluten containing foods. This is typical withing the celiac population because of "leaky gut syndrome". It could be almost any food but most common offenders seem to be dairy, oat (even gluten free oats) and eggs. Some foods have proteins that are similar enough to gluten to cause reactions that mimic being "glutened".

Finally, I will include this link as most of us lack full awareness at the outset of our gluten free journey of the many ways gluten shows up in our food supply and in foods we would never expect to find it in such as soy sauce and canned tomato soup. Studies show that most people who believe they are eating gluten free are actually eating lower gluten.

 

Edited April 17, 2023 by trents

[the-sprawl]

Sounds a little abnormal but not completely unheard of. Your body is finally getting a chance to shift away from eating food every day that is causing further damage and getting the chance to actually try to heal. 
 

There are a few things it could be:

1) hidden gluten in something—maybe it’s easier these days but a lot of us who have been on this gluten-free diet for a decade plus found out the hard way about some particular item they were eating. Oats can cause problems for people, even ones that claim to be gluten free like Cheerios.

 

2) Vitamin deficiencies—that villi damage you mentioned can contribute to inability to absorb certain vitamins or synthesize some of the vitamins we can normally make in healthy intestines. Now that they’ve confirmed the celiac diagnosis I’d ask specifically about testing for any celiac-related vitamin deficiencies. I’d never been big on just taking daily multivitamins until I had celiac disease and realized how it was actually warranted (at least at the beginning)

 

3) General gut microbiome issues. An inflamed, damaged digestive system can make it tough for the kind of normal intestinal flora to flourish and you may be going through a bit of a turnover period. Yogurt and some probiotics (careful with the labels) may be a good idea.

[Russ H]

9 hours ago, PrinceTrent said:

 It seems like the problem is getting worse instead of better. Has anyone else experienced this? Could this just be transition to a new diet, and I need to be more gentle with myself?

One of the symptoms I experienced was bloating, burping and reflux. That suddenly resolved after 3 months on a gluten free diet. Other symptoms gradually resolved over a year or so.

[heathers430]

11 hours ago, PrinceTrent said:

Hi everyone,

I am in my 30s and new to Celiac. I was diagnosed a few weeks ago. Apparently the my villi are quite damaged. I had been having pretty bad abdominal pain for a while and went to see a specialist. Honestly I was relieved when I got the diagnosis. It was an answer. That’s when things got worse.

There is no gluten in our house. I haven’t eaten out anywhere. Yet I have felt progressively worse. Every morning I have horrible stomach pain. A week of horrible stomach pain changed to stomach pain and diarrhea the next week. It seems like the problem is getting worse instead of better. Has anyone else experienced this? Could this just be transition to a new diet, and I need to be more gentle with myself?

Hi—sorry you are miserable. I am newly diagnosed as well. I can tell you that I have multiple food intolerances on top of celiac. What you are describing reminds me of when I add something to my diet that is an intolerance. I wonder if something you are eating to replace gluten foods is making you sick? For example I found out I can’t tolerate almonds. They’re used frequently in gluten-free goods. For me it takes about 55-48 hours for something that makes me sick to exit. Keep a log and see if you can pinpoint it. Don’t forget the things you drink. I had to give up coffee as one of mine. Sorry. I know this is miserable. Hope you figure it out soon. 

[trents]

Prince, you might want to also look into SIBO (Small Intestine Bacterial Overgrowth) and histamine intolerance, both are common collateral conditions associated with celiac disease.

Edited April 17, 2023 by trents

[Scott Adams]

You may try also cutting out dairy/casein for a while, as many celiacs cannot tolerate it due to the gut damage. This may change after your gut heals.

[PrinceTrent]

18 hours ago, the-sprawl said:

Sounds a little abnormal but not completely unheard of. Your body is finally getting a chance to shift away from eating food every day that is causing further damage and getting the chance to actually try to heal. 
 

There are a few things it could be:

1) hidden gluten in something—maybe it’s easier these days but a lot of us who have been on this gluten-free diet for a decade plus found out the hard way about some particular item they were eating. Oats can cause problems for people, even ones that claim to be gluten free like Cheerios.

 

2) Vitamin deficiencies—that villi damage you mentioned can contribute to inability to absorb certain vitamins or synthesize some of the vitamins we can normally make in healthy intestines. Now that they’ve confirmed the celiac diagnosis I’d ask specifically about testing for any celiac-related vitamin deficiencies. I’d never been big on just taking daily multivitamins until I had celiac disease and realized how it was actually warranted (at least at the beginning)

 

3) General gut microbiome issues. An inflamed, damaged digestive system can make it tough for the kind of normal intestinal flora to flourish and you may be going through a bit of a turnover period. Yogurt and some probiotics (careful with the labels) may be a good idea.

I appreciate your thoughts here. My doctor asked me to stop probiotics since, in her opinion, my gut would more naturally balance itself as it healed (I was on them for the past year). Yogurt seems to be giving me issues. I wonder if my body is negatively reacting to dairy all of a sudden (odd since it never did before). I did have blood tests done for deficiencies. Thankfully iron was the only thing I was lower in. I'm on a supplement for that now as well as a daily multivitamin. 

1 hour ago, Scott Adams said:

You may try also cutting out dairy/casein for a while, as many celiacs cannot tolerate it due to the gut damage. This may change after your gut heals.

This is one of my wonderings. I have never had an issue with dairy and actually consume quite a bit of dairy on a daily basis. Is there a connection between having a new reaction to dairy after going on a gluten-free diet with Celiac? I'm curious to have more information on how that happens. It seems strange that my body would suddenly stop tolerating something I've had for so many years. 

[Scott Adams]

I haven't heard of someone getting new food intolerance issues just after going gluten-free, but the timing of any additional food intolerance issues that might be triggered by damaged villi isn't perfect. It's possible that they have developed recently because you likely still have leaky gut issues.

[xSkylarxxstarx]

21 hours ago, PrinceTrent said:

Hi everyone,

I am in my 30s and new to Celiac. I was diagnosed a few weeks ago. Apparently the my villi are quite damaged. I had been having pretty bad abdominal pain for a while and went to see a specialist. Honestly I was relieved when I got the diagnosis. It was an answer. That’s when things got worse.

There is no gluten in our house. I haven’t eaten out anywhere. Yet I have felt progressively worse. Every morning I have horrible stomach pain. A week of horrible stomach pain changed to stomach pain and diarrhea the next week. It seems like the problem is getting worse instead of better. Has anyone else experienced this? Could this just be transition to a new diet, and I need to be more gentle with myself?

Interestingly enough, this did happen to me as well. I had symptoms for 10 years before my diagnosis, and I was relieved to finally have an answer and finally be able to do something about my pain. When I was diagnosed in January 2022 with celiacs, I was told I had 3B villi damage (meaning barely any villi left). For 3 months after my diagnosis I was still having horrible symptoms, even on a super strict gluten free diet. However, I never checked the ingredients on my daily vitamins, which contained wheat flour as the second ingredient. Turns out, I was getting exposed daily and didn’t even know it for months. Please please PLEASE double check the labels on everything friend, as you could possibly be getting exposed and not even realize it.

[PrinceTrent]

13 hours ago, xSkylarxxstarx said:

Interestingly enough, this did happen to me as well. I had symptoms for 10 years before my diagnosis, and I was relieved to finally have an answer and finally be able to do something about my pain. When I was diagnosed in January 2022 with celiacs, I was told I had 3B villi damage (meaning barely any villi left). For 3 months after my diagnosis I was still having horrible symptoms, even on a super strict gluten free diet. However, I never checked the ingredients on my daily vitamins, which contained wheat flour as the second ingredient. Turns out, I was getting exposed daily and didn’t even know it for months. Please please PLEASE double check the labels on everything friend, as you could possibly be getting exposed and not even realize it.

Ok... this sounds similar to me. I've always had some type of symptoms but doctors consistently wrote it off as "just IBS". My pain just started to get much worse in January, which led me to push for more specific answers. I've also been told that I have 3B villi damage. I am absolutely double-checking everything I am eating now just to make sure. I'm also going to try going dairy-free for a while to see if it changes anything. Thanks for the extra push!

[PrinceTrent]

On 4/17/2023 at 2:24 PM, Scott Adams said:

You may try also cutting out dairy/casein for a while, as many celiacs cannot tolerate it due to the gut damage. This may change after your gut heals.

The more I read, the more this sounds like a good idea, so yesterday was my first day going dairy-free as well. It also seems like abdominal pain and looser stools are just part of the initial recovery process. Does that seem to be the case? I've double checked my food to make sure that I'm not eating anything that isn't gluten free, yet I'm still having these symptoms that come and go throughout the day. Anything you may know in particular that can help ease that pain during this recovery season?

[Lizi]

Hi PrinceTrent! 

I am new to this site as well; welcome. I was diagnosed with celiac 13 years ago and went off gluten then, which helped a little but not a lot; and I very recently found that eliminating all grains and anything that's remotely grain-like (including nuts, soy, pseudograins, corn, rice, etc.) has been AMAZING. Was vegan until this switch but trying dairy now and having no issues yet. I mean, it's better than it's ever been. Ever. Insane.

Really wish I'd figured this out so much earlier! Good luck with the process. A real PITA but well worth the effort in the end. 

Lizi

[Scott Adams]

4 hours ago, PrinceTrent said:

The more I read, the more this sounds like a good idea, so yesterday was my first day going dairy-free as well. It also seems like abdominal pain and looser stools are just part of the initial recovery process. Does that seem to be the case? I've double checked my food to make sure that I'm not eating anything that isn't gluten free, yet I'm still having these symptoms that come and go throughout the day. Anything you may know in particular that can help ease that pain during this recovery season?

The recovery process can be different with everyone, and since most celiacs have leaky gut by the time they are diagnosed they are also prone to additional food intolerances which may go away after their gut heals. You may want to keep a food diary and need to eliminate other foods for a while.

[Taradaktull]

On 4/19/2023 at 9:53 AM, PrinceTrent said:

The more I read, the more this sounds like a good idea, so yesterday was my first day going dairy-free as well. It also seems like abdominal pain and looser stools are just part of the initial recovery process. Does that seem to be the case? I've double checked my food to make sure that I'm not eating anything that isn't gluten free, yet I'm still having these symptoms that come and go throughout the day. Anything you may know in particular that can help ease that pain during this recovery season?

Hi! I was diagnosed with celiac 4 months ago. I never had digestive issues, so I didn’t get diagnosed until I was 61. Two months after quitting gluten, I started having diarrhea everyday. My GI doctor told me to try quitting dairy to see if that was causing the issue. I have been eating and drinking dairy my whole life with no issues and, now, I can’t eat it without gas and diarrhea. My doctor couldn’t explain why I was suddenly unable to eat dairy, but it is worth cutting it out for a few weeks to see if that is the issue.

[trents]

45 minutes ago, Taradaktull said:

Hi! I was diagnosed with celiac 4 months ago. I never had digestive issues, so I didn’t get diagnosed until I was 61. Two months after quitting gluten, I started having diarrhea everyday. My GI doctor told me to try quitting dairy to see if that was causing the issue. I have been eating and drinking dairy my whole life with no issues and, now, I can’t eat it without gas and diarrhea. My doctor couldn’t explain why I was suddenly unable to eat dairy, but it is worth cutting it out for a few weeks to see if that is the issue.

This happens to many celiacs for one of two reasons: 1. They develop lactose intolerance or 2. they develop intolerance to the protein "casein" found in milk. Casein closely resembles gluten in it's molecular structure. The "leaky gut syndrome" that accompanies celiac disease causes the immune system to falsely identify safe food proteins as invaders.

[T burd]

On 4/16/2023 at 9:46 PM, PrinceTrent said:

Hi everyone,

I am in my 30s and new to Celiac. I was diagnosed a few weeks ago. Apparently the my villi are quite damaged. I had been having pretty bad abdominal pain for a while and went to see a specialist. Honestly I was relieved when I got the diagnosis. It was an answer. That’s when things got worse.

There is no gluten in our house. I haven’t eaten out anywhere. Yet I have felt progressively worse. Every morning I have horrible stomach pain. A week of horrible stomach pain changed to stomach pain and diarrhea the next week. It seems like the problem is getting worse instead of better. Has anyone else experienced this? Could this just be transition to a new diet, and I need to be more gentle with myself?

Lots of good replies. Just adding You may want to get allergy testing as well. It takes time to heal. Take probiotics. Don’t eat gluten free breads for a while, just go to naturally gluten free fresh foods.