I still have Nausea despite being Gluten Free

[PurpleMorphSuit]

Hi all, 

I am 19, Male and live inside the UK. I weigh around 10st and I am 6ft 4.

To cut a long story short, I am not officially diagnosed with celiac disease but gluten causes me crippling pain to the point where I can't even walk, severe diarrhea and loss of appetite. The crippling pain literally disappeared within two days of going gluten free. I am now three weeks down the line and I feel almost back to normal except I feel nauseous all the time during the day. My symptoms goes as follows:

• Tenderness at the top of the abdomen
• Nausea 1 - 2 hours after eating (sometimes even after water),
• Usually lasts for a few hours Nausea is relieved/improves immediately after eating
• If I don't eat anything I have zero nausea
• Nausea is usually completely gone in the evenings (after 7-8 PM or so)
• Stomach pain/heartburn is more severe when I haven't eaten for a while or lying down

I have had a blood tests for quite a few things such as liver function, thyroid, diabetes, Iron and B12 levels just to name a few. I have had a full body CT scan, all clear but had slight inflammation of the terminal ileum (bit connecting small intestine to colon). An ultrasound of the abdomen (including gallstones) which again was all clear. Urine tests were clear. 

I had these exact same issues, nausea and pain two years ago so had an MRI done. Showed exact same inflammation in terminal ileum as now so had a colonoscopy done which showed lymphoid hyperplasia (was put down to an infection). Symptoms went away during the summer holiday due what I believe a change of diet (as in I stopped consuming a baguette and muffin each day). I still didn't feel 100% since then but the nausea was so minimal I didn't even notice but I still felt drained, lethargic and had brain fog. I'll be having another colonoscopy on the 29th just to check for Irritable Bowel Disease because out of all the tests I have had done, the only thing that is abnormal is the terminal ileum in the CT scan. I have not had an endoscopy.

Did anyone else experience nausea almost 24/7 except midnight or before breakfast?

The Doctor suspects gastritis and so have been on 20mg of omeprazole for three days. I am literally begging for answers right now, as I've been bedridden since August (up until I went gluten free in the first week of December which now leaves the nausea) and should be enjoying my life at university but I am instead stuck at home feeling nauseated each day. I've been admitted to A&E three separate times due to severe pain and haven't seen anyone besides the people that live in my house or the doctors since August. It literally feels like I have been to hell and back so any ideas, literally anything will do. Finally, I am 2000% sure I am not being cross contaminated, using stainless steel pans and there is currently no gluten inside the house. 

Thank you for reading 

[GFinDC]

Merry Christmas PurpleMorphSuit!  Ahhh,  It feels good just saying that.

First off, 3 weeks on the gluten-free diet is not very long to expect big results.  it can take months to recover from celiac disease damage.  2nd off, if you ever want to get a formal diagnosis you should consult a doctor right away about getting the blood tests done.  It may be too late after starting the gluten-free diet but a doctor can tell you if so.

Stand by for the B vitamin pushers to come along and tell you all your symptoms are from B vitamin deficiency.  There are a couple of them around the forum.  Myself i think B vitamins are important but so are vitamin D and many other vitamins and minerals.

It somewhat sounds like an ulcer to me.  But really it's too early in the gluten-free diet to jump to any conclusions.

I can tell you that many people do better by cutting out all dairy and oats from their diet for a few months,  It's also helpful to cut down on carbs and sugar, and eat a simple diet.  Whole foods like meats, veggies, eggs, nuts and fruit are examples of whole foods.

You might want to try some digestive enzymes with meals and maybe some Betaine HCL.

Remember, lots of ingredients means a lot of ingredients to check and verify.  Simple whole foods are better when starting out gluten-free.  Some peppermint tea may help your stomach a little

Edited December 25, 2020 by GFinDC

[Scott Adams]

Nausea is a common symptom of celiac disease, and the average time to recovery for most celiacs is two years. This article may be helpful:

 

[PurpleMorphSuit]

20 hours ago, GFinDC said:

Merry Christmas PurpleMorphSuit!  Ahhh,  It feels good just saying that.

First off, 3 weeks on the gluten-free diet is not very long to expect big results.  it can take months to recover from celiac disease damage.  2nd off, if you ever want to get a formal diagnosis you should consult a doctor right away about getting the blood tests done.  It may be too late after starting the gluten-free diet but a doctor can tell you if so.

Stand by for the B vitamin pushers to come along and tell you all your symptoms are from B vitamin deficiency.  There are a couple of them around the forum.  Myself i think B vitamins are important but so are vitamin D and many other vitamins and minerals.

It somewhat sounds like an ulcer to me.  But really it's too early in the gluten-free diet to jump to any conclusions.

I can tell you that many people do better by cutting out all dairy and oats from their diet for a few months,  It's also helpful to cut down on carbs and sugar, and eat a simple diet.  Whole foods like meats, veggies, eggs, nuts and fruit are examples of whole foods.

You might want to try some digestive enzymes with meals and maybe some Betaine HCL.

Remember, lots of ingredients means a lot of ingredients to check and verify.  Simple whole foods are better when starting out gluten-free.  Some peppermint tea may help your stomach a little

Hi, thanks for your reply! Sorry, I am replying so late (Christmas and all). 

I've had four celiac blood tests in the past two years with all coming out negative but I am still convinced it's celiac disease. I tried to do the endoscopy but got three days in and it was all too much for me. I've tried to go lactose free, soya free, tried low FODMAP but none of them worked. 

I know I'm not expecting a quick recovery but considering I am 19, I was expecting the debilitating nausea to go too (as well as the intense pain). 

This then leaves me to today. I woke up this morning (earlier than usual because it's Christmas) and for the first time in months, I decided to brush my teeth then have breakfast. I woke up feeling a 9/10 and within minutes of brushing my teeth, I dropped to a 2/10. So, I was like wtf, I haven't consumed any food this morning why is this happening. Then it hit me! It wasn't the food that was making me feel sick but me brushing my teeth which I do immediately after breakfast without fail. 

With this new information, I ran upstairs and washed my mouth out with warm water at midday. By 3pm the nausea had completely stopped for the first time since August. I assume there are still gluten particulates stuck on the head of the brush and so when I brush my teeth, I basically contaminate my teeth with gluten. So throughout the day when I lick my teeth, I ingest enough gluten to almost reset the nauseous timer.   

I woke up this morning thinking 'I guess my Christmas miracle never came true,' and now I am going to sleep with 100% confidence that it's this causing the problem. Also, it explained why last night I felt sick at 2am (never happened before) but as a one off I brushed my teeth at midnight. 

But yeah, that's it. Four months of torture almost to the day will be resolved tomorrow. 

[RMJ]

So glad you’ve made the connection!  It also might be some reaction to your toothpaste?  

I hope you remain nausea free!

[DJFL77I]

9 hours ago, PurpleMorphSuit said:

 

I've had four celiac blood tests in the past two years with all coming out negative 

 

if you don't have high antibodies then i doubt you'd have celiac

[PurpleMorphSuit]

9 hours ago, RMJ said:

So glad you’ve made the connection!  It also might be some reaction to your toothpaste?  

I hope you remain nausea free!

No, I checked the toothpaste and it's definitely gluten free. It's most likely the toothbrush head and somehow there is still gluten on it. So I've bought new toothbrush heads and new toothpaste just to be sure.

I'm feeling relatively good this morning. 

[cristiana]

Hello there!

I'm just wondering (sorry if I have missed something in your post) if you have been drinking any alcohol? I get gastritis-like symptoms (burning stomach just under sternum, left side of ribs) when gluten sneaks into my diet.  I had terrible burning there for months a while back and realised after some time my iron supplement contained gluten (Floradix vs Floravital). 

When this was going on I saw a gastroenterologist and she asked me if I drank.  Well - I don't, I've never enjoyed the taste (tastes like medicine to me!) but I did make an exception to be sociable when my family and I were invited to a baptism and there was champagne afterwards.  I only had half a glass - and the pain!  Awful!   So it might be worth giving drinking a break while you are recovering.  

Cristiana

[PurpleMorphSuit]

8 hours ago, DJFL77I said:

 

if you don't have high antibodies then i doubt you'd have celiac

There's a deficiency which causes your antibodies to never raise regardless of the amount of gluten you intake which occurs to 5% of all tests. I am telling you now though that gluten is the problem.

5 hours ago, cristiana said:

Hello there!

I'm just wondering (sorry if I have missed something in your post) if you have been drinking any alcohol? I get gastritis-like symptoms (burning stomach just under sternum, left side of ribs) when gluten sneaks into my diet.  I had terrible burning there for months a while back and realised after some time my iron supplement contained gluten (Floradix vs Floravital). 

When this was going on I saw a gastroenterologist and she asked me if I drank.  Well - I don't, I've never enjoyed the taste (tastes like medicine to me!) but I did make an exception to be sociable when my family and I were invited to a baptism and there was champagne afterwards.  I only had half a glass - and the pain!  Awful!   So it might be worth giving drinking a break while you are recovering.  

Cristiana

Nah, I have been completely sober since August (four months ago) when all these symptoms started. I am sure four months down the line, if it was alcohol induced it would have improved. 

[cristiana]

Do you eat oats (even the "pure" ones, which haven't been contaminated with gluten)?   Quite a few celiacs react to the protein avenin - and I'm one of them.  If I eat them I'll end up with gastritis-like symptoms and an upset stomach for two to three weeks.

[PurpleMorphSuit]

3 hours ago, cristiana said:

Do you eat oats (even the "pure" ones, which haven't been contaminated with gluten)?   Quite a few celiacs react to the protein avenin - and I'm one of them.  If I eat them I'll end up with gastritis-like symptoms and an upset stomach for two to three weeks.

Nope, haven't touched them for weeks. Also, I found out the problem was the head of my toothbrush.

 

[Tipps]

On 12/24/2020 at 5:24 PM, PurpleMorphSuit said:

Hi all, 

I am 19, Male and live inside the UK. I weigh around 10st and I am 6ft 4.

To cut a long story short, I am not officially diagnosed with celiac disease but gluten causes me crippling pain to the point where I can't even walk, severe diarrhea and loss of appetite. The crippling pain literally disappeared within two days of going gluten free. I am now three weeks down the line and I feel almost back to normal except I feel nauseous all the time during the day. My symptoms goes as follows:

• Tenderness at the top of the abdomen
• Nausea 1 - 2 hours after eating (sometimes even after water),
• Usually lasts for a few hours Nausea is relieved/improves immediately after eating
• If I don't eat anything I have zero nausea
• Nausea is usually completely gone in the evenings (after 7-8 PM or so)
• Stomach pain/heartburn is more severe when I haven't eaten for a while or lying down

I have had a blood tests for quite a few things such as liver function, thyroid, diabetes, Iron and B12 levels just to name a few. I have had a full body CT scan, all clear but had slight inflammation of the terminal ileum (bit connecting small intestine to colon). An ultrasound of the abdomen (including gallstones) which again was all clear. Urine tests were clear. 

I had these exact same issues, nausea and pain two years ago so had an MRI done. Showed exact same inflammation in terminal ileum as now so had a colonoscopy done which showed lymphoid hyperplasia (was put down to an infection). Symptoms went away during the summer holiday due what I believe a change of diet (as in I stopped consuming a baguette and muffin each day). I still didn't feel 100% since then but the nausea was so minimal I didn't even notice but I still felt drained, lethargic and had brain fog. I'll be having another colonoscopy on the 29th just to check for Irritable Bowel Disease because out of all the tests I have had done, the only thing that is abnormal is the terminal ileum in the CT scan. I have not had an endoscopy.

Did anyone else experience nausea almost 24/7 except midnight or before breakfast?

The Doctor suspects gastritis and so have been on 20mg of omeprazole for three days. I am literally begging for answers right now, as I've been bedridden since August (up until I went gluten free in the first week of December which now leaves the nausea) and should be enjoying my life at university but I am instead stuck at home feeling nauseated each day. I've been admitted to A&E three separate times due to severe pain and haven't seen anyone besides the people that live in my house or the doctors since August. It literally feels like I have been to hell and back so any ideas, literally anything will do. Finally, I am 2000% sure I am not being cross contaminated, using stainless steel pans and there is currently no gluten inside the house. 

Thank you for reading 

Hello,

I just wanted to let you know that about 10% of people with celiac disease, including myself, have negative blood test. The only definite confirmation is an endoscopy with vili biopsy. I tested negative on the blood test, was told to eat gluten until my endoscopy (6 months later). I couldn’t poison myself for so long so I was gluten free. After the endoscopy confirmed gluten damage (blunted vili) even after 6 months of gluten-free diet; my gastroenterologist still puzzled by the negative blood test, ordered the genetic testing and found out that I had both genes required for celiac disease. He then apologized etc., told me to be on gluten-free diet for the rest of my life. Most doctors don’t know about celiacs with negative blood test (even though I read about it in a medical journal in the doctor’s waiting room). Anyway good luck and good health to you!

[RMJ]

Hi PurpleMorphSuit,

How are you doing?  I hope you’re remaining nausea free?  It is such an obnoxious symptom!

 

[NNowak]

There are many reasons for nausea related to a GI that needs healing. Is there a functional medicine professional that you can connect with through telemedicine at this time?  You should have some labs run and some direction from a professional so you aren’t spinning your wheels.  
 

In health. 

[DJFL77I]

10 hours ago, Tipps said:

Hello,

I just wanted to let you know that about 10% of people with celiac disease, including myself, have negative blood test. The only definite confirmation is an endoscopy with vili biopsy. I tested negative on the blood test, was told to eat gluten until my endoscopy (6 months later). I couldn’t poison myself for so long so I was gluten free. After the endoscopy confirmed gluten damage (blunted vili) even after 6 months of gluten-free diet; my gastroenterologist still puzzled by the negative blood test, ordered the genetic testing and found out that I had both genes required for celiac disease. He then apologized etc., told me to be on gluten-free diet for the rest of my life. Most doctors don’t know about celiacs with negative blood test (even though I read about it in a medical journal in the doctor’s waiting room). Anyway good luck and good health to you!

celiac is strange   ;o/

[PurpleMorphSuit]

On 12/27/2020 at 11:46 PM, RMJ said:

Hi PurpleMorphSuit,

How are you doing?  I hope you’re remaining nausea free?  It is such an obnoxious symptom!

 

Hiya! Yeah, so afterwards I called up the doctor, explained my symptoms and they said I had gastritis. It turned out it wasn't the gluten in the toothbrush head causing me symptoms but the mint in toothpaste. The mint then relaxes my upper esophagus valve which then causes the nausea/heartburn. I guess we will have to see if the PPI's work.