GI symptoms not going away

[Kate1990]

Hi again,

I made a post about a month ago because I couldn't find why my symptoms had returned after 5 years without any - turns out I had been taking meds that had gluten in them for about 3 months, with symptoms starting during the second month and exploding in the third month.

I stopped taking it a month ago and the DH has gone down by at least 50%, but the GI symptoms are as bad as ever. I wake up extremely bloated and burping, and have cramps throughout the day. I'm on a low fodmap diet and trying to identify foods that make it worse, but... it seems like I can't digest anything properly. This is causing me so much anxiety, does anyone know what I could do to make it better, or when I can expect for things to calm down?

[GodsGal]

On 8/26/2021 at 8:53 PM, Kate1990 said:

Hi again,

I made a post about a month ago because I couldn't find why my symptoms had returned after 5 years without any - turns out I had been taking meds that had gluten in them for about 3 months, with symptoms starting during the second month and exploding in the third month.

I stopped taking it a month ago and the DH has gone down by at least 50%, but the GI symptoms are as bad as ever. I wake up extremely bloated and burping, and have cramps throughout the day. I'm on a low fodmap diet and trying to identify foods that make it worse, but... it seems like I can't digest anything properly. This is causing me so much anxiety, does anyone know what I could do to make it better, or when I can expect for things to calm down?

Hi Kate!

I'm not a medical professional, just a friend on the journey. 

I can imagine how difficult and discouraging this experience must be. I sounds like you are doing the right steps. Have you consulted with your GI doctor? 

[Kate1990]

That's the thing, my GP doesn't think it's serious and refuses to give me a recommendation for a gastro or even a nutritionist. I'm on my own to figure this out... Since doing more research on this forum I've cut out oats and I think it's helping...

[Scott Adams]

I think taking good probiotics might be helpful. You might also try eliminating casein/dairy for a time, to see if this might be contributing to the issue. This is the most common intolerance for those with celiac disease.

[Kate1990]

Thank you Scott for taking the time to answer! I already cut out dairy a long time ago because it gives me cystic acne. I tried the probiotics in capsules and it didn't seem to work, but now I'm trying coconut yogurt with probiotics in it and it seems to help. My dr wants me to take Dexilant but I'm worried it might make things worse. At this point I'm just hoping that I can convince her to refer me to a gastro and a nutritionist and that the symptoms will subside when my gut heals

[Scott Adams]

I take this one:
https://www.amazon.com/dp/B08NSXBYVV

because it includes Bifidobacterium Lactis Infantis, and we've summarized lots of research that indicates it can be helpful in celiacs:
https://www.celiac.com/search/?q=Bifidobacterium&quick=1&type=cms_records2

You might also consider the amino acid tryptophan. 

[Kate1990]

Thank you, I'll try these out! Maybe the ones I bought originally weren't of the right quality or the right strains

[Kate333]

Hi fellow Kate. 

You might consider what else (besides diet, meds) could be possible triggers/contributing factors.  There are many different causes of GI distress besides gluten.  

In my case, I am fairly newly diagnosed and have been strictly gluten-free only since March 2020, about 15 months, but I still have GI issues.  But I think mine are largely due to stress/depression in my life: work stress + a new, chronic health diagnosis (celiac disease) + the onset of sudden (now seemingly endless) pandemic.  Throughout my life, my gut has always been a very sensitive "instrument"--a barometer of my stress levels.  And having to suddenly cope with all of those factors at once this past year+ has not exactly kept my gut in the happiest, healthiest condition. 

For solutions, I find it helpful to try to make sure I am doing all I can to reduce anxiety/depression levels and get enough sleep each night.  One of my favorite websites is anxietycentre.com because it explains in detail the many ways emotions, even low-level anxiety/depression, can physically affect/change our bodies over time, esp. the gut.  Learning more about the mind-body link alone was a BIG revelation to me!  The website also includes a list of the many online resources for anxiety/depression reduction, from virtual support groups to free meditation and therapy videos, apps.  Some folks also find a low-dose anti-anxiety/anti-depressant helpful in managing gut symptoms.          

One other suggestion is to either pay for a GI consult out of pocket (if you are able) or tell your GP you want to speak to another doctor for a second opinion (who hopefully would refer you to a GI doc).   If you haven't had a recent TTG or EGD for over 5 years, I would think you would have a very good case for at least an updated TTG blood test and/or EGD to see if your gut has completely healed.  If the TTG is abnormally high, then at least you will have some reassurance that the recent distress was likely just something you ate and your symptoms will likely resolve with time as your recent diet/med changes help flush the remnants of the gluten out of your system.  That knowledge alone should reduce the stress of wondering and wondering.  Also, just my personal opinion, but I would avoid the Dexilant (or any PPIs) like the plague before talking to a GI specialist and giving your body more time to heal.  (BTW, I had never heard of Dexilant before, so I did a quick search. The company's own website lists D, stomach pain, nausea, and gas as possible side effects and you already have too much of that in your life.)    

Best of luck on your healing journey! 

[Kate1990]

32 minutes ago, Kate333 said:

Hi fellow Kate. 

You might consider what else (besides diet, meds) could be possible triggers/contributing factors.  There are many different causes of GI distress besides gluten.  

In my case, I am fairly newly diagnosed and have been strictly gluten-free only since March 2020, about 15 months, but I still have GI issues.  But I think mine are largely due to stress/depression in my life: work stress + a new, chronic health diagnosis (celiac disease) + the onset of sudden (now seemingly endless) pandemic.  Throughout my life, my gut has always been a very sensitive "instrument"--a barometer of my stress levels.  And having to suddenly cope with all of those factors at once this past year+ has not exactly kept my gut in the happiest, healthiest condition. 

For solutions, I find it helpful to try to make sure I am doing all I can to reduce anxiety/depression levels and get enough sleep each night.  One of my favorite websites is anxietycentre.com because it explains in detail the many ways emotions, even low-level anxiety/depression, can physically affect/change our bodies over time, esp. the gut.  Learning more about the mind-body link alone was a BIG revelation to me!  The website also includes a list of the many online resources for anxiety/depression reduction, from virtual support groups to free meditation and therapy videos, apps.  Some folks also find a low-dose anti-anxiety/anti-depressant helpful in managing gut symptoms.          

One other suggestion is to either pay for a GI consult out of pocket (if you are able) or tell your GP you want to speak to another doctor for a second opinion (who hopefully would refer you to a GI doc).   If you haven't had a recent TTG or EGD for over 5 years, I would think you would have a very good case for at least an updated TTG blood test and/or EGD to see if your gut has completely healed.  If the TTG is abnormally high, then at least you will have some reassurance that the recent distress was likely just something you ate and your symptoms will likely resolve with time as your recent diet/med changes help flush the remnants of the gluten out of your system.  That knowledge alone should reduce the stress of wondering and wondering.  Also, just my personal opinion, but I would avoid the Dexilant (or any PPIs) like the plague before talking to a GI specialist and giving your body more time to heal.  (BTW, I had never heard of Dexilant before, so I did a quick search. The company's own website lists D, stomach pain, nausea, and gas as possible side effects and you already have too much of that in your life.)    

Best of luck on your healing journey! 

Hi Kate,

Thank you for taking the write such a detailed response. I'll definitely check out anxietycentre.com - I hadn't thought of that. On top of the stress of the pandemic, it messed with our usual schedules and habit, and for me that meant I stopped doing yoga/meditation regularly. I'll pick it back up thanks to your advice and I hope it will help.

Your gut feeling (pun intended) about Dexilant was right, I took it only once and it made me sick. At least this gives me a legitimate excuse to circle back with my GP and ask for more help.

I hope that everything settles for you as well very soon. With a bit of luck and solidarity, we should be out of this mess eventually...