Vomiting With Celiac?

[aimeetheceliac]

Hi everyone.

 

My name is Aimee, I'm 19 and I live in Ohio.

 

In May 2013, I began throwing up. It started out randomly but soon began to happen daily. In September 2013, I went to the Cleveland clinic. They said I had some type of virus and did not run any tests. In October 2013, I went to a local gastroenterologist who ordered an upper endoscopy. It showed I had celiac disease. A blood test confirmed it. The diarrhea I’ve had for years finally stopped after I began eating a gluten free diet, but the nausea and vomiting continued. In February 2014, I had a gastric emptying test; the results were normal. In April 2014, I had a HIDA scan, which showed that my gallbladder contacted abnormally. In June 2014, I had an ultrasound of my abdomen, which showed my gallbladder full of stones but everything else was normal. In July 2014, I had a laparoscopic gallbladder removal surgery. The first day or two after the surgery I was not nauseous, but by the end of that week it was as if I hadn’t had the surgery at all. Later that month, I went to the emergency room because I vomited 6 times in a day. I had a CAT scan of my abdomen in the ER which was normal. In August 2014, I had a small bowel series and an MRI of my brain done, both of which were normal. In October 2014, I went to another hospital. They did not feel any of the tests that had been done were worth repeating. They did not conduct any additional tests either, except for a blood test that showed by BUN levels and BUN/creatinine ratio were low. About a week ago, I vomited blood. There was also blood in my stool. I went to the emergency room. They did a rectal exam which was normal. They also put a tube down my nose into my stomach to apply suction to check for blood in my stomach. That test was normal as well. There was no internal bleeding. They determined that the blood I threw up was from a small tear in my esophagus.

 

The medications I have tried for nausea/vomiting include Phernergan, Reglan, and Zofran. Phernergan helped slightly, Reglan did not help at all, and Zofran helped the best out of the three but still did not help very much.

 

I am about running out of hope. I don't know what to do and I'd like to know if any other celiacs have similar symptoms, even though they are following a gluten free diet.

 

Also, for some reason the nausea/vomiting is more prominent in the morning. (No, I'm not pregnant.)

[StephanieL]

Do you do a lot of dairy?  Many times that can be an issue.  I am sorry you are dealign with this. Not fun at all

[SMRI]

Have they tested blood sugar levels?  Has anyone looked into this?  Open Original Shared Link

[cmjgpchicago]

My 3.5 yr old son was diagnosed w/celiac in August after monthly unexpained vomiting always in the morning, bloated belly, and reflux. He's been gluten-free since then and vomited this morning for the first time since. His other symptoms - rectal prolapse, constipation, joint pain, behavior, have not gone away yet either. His levels were very high so we were told it could take up to a year to get them normal again, but it is so frustrating that the pain and other symptoms haven't dissipated yet. I'm so sorry you're going through this. I believe we are going to eliminate dairy next to see if he improves. It can be so discouraging when you think you've found the root cause only to be let down again.

[cyclinglady]

Have you had another HIDA scan? I know you had your GB removed, but did they re-check your bile duct? My Aunt had to have a stent inserted after her gallbladder removal. Her duct kept collapsing and causing GB "like" symptoms. Bile was not moving through properly. I am not sure a CT scan would pick it up. Nothing but the HIDA caught my non-functioning gallbladder (GB).

Here is long-shot theory.....Are you getting glutened by accident? Is there gluten in your house? Who prepares your food? What about lipstick, sunscreen, lotion, dog food, etc.

[cyclinglady]

  On 11/6/2014 at 2:50 AM, cmjgpchicago said:

My 3.5 yr old son was diagnosed w/celiac in August after monthly unexpained vomiting always in the morning, bloated belly, and reflux. He's been gluten-free since then and vomited this morning for the first time since. His other symptoms - rectal prolapse, constipation, joint pain, behavior, have not gone away yet either. His levels were very high so we were told it could take up to a year to get them normal again, but it is so frustrating that the pain and other symptoms haven't dissipated yet. I'm so sorry you're going through this. I believe we are going to eliminate dairy next to see if he improves. It can be so discouraging when you think you've found the root cause only to be let down again.

Hang in there, Mom!

Eliminating dairy is an excellent idea. Intestinal villi is damaged and can not release all the various enzymes to help digest foods or, in this case, lactose (milk sugar). Some people resolve their food intolerances eventually.

It takes time to cause damage and time to heal. I am sure you will see results in a few more months.

Have you read our Newbie 101 section under "Coping"? It contains valuable tips regarding cross contamination. Each glutening can delay healing.

Here is the link:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

It is a huge learning curve and we have all been in your shoes as a newbie.

Hugs for your little boy...

[aimeetheceliac]

  On 11/5/2014 at 7:02 PM, StephanieL said:

Do you do a lot of dairy? Many times that can be an issue. I am sorry you are dealign with this. Not fun at all

It sucks so bad. It's terrible. And yes I eat a good amount of dairy but foods usually don't trigger the nausea and vomiting. Eating certainly doesn't help but it's always worse in the morning before I eat anything.

[aimeetheceliac]

  On 11/5/2014 at 9:19 PM, SMRI said:

Have they tested blood sugar levels? Has anyone looked into this? Open Original Shared Link

I've had a lot of blood tests done, most have come back normal. Including blood sugar. :/

[aimeetheceliac]

  On 11/6/2014 at 2:50 AM, cmjgpchicago said:

My 3.5 yr old son was diagnosed w/celiac in August after monthly unexpained vomiting always in the morning, bloated belly, and reflux. He's been gluten-free since then and vomited this morning for the first time since. His other symptoms - rectal prolapse, constipation, joint pain, behavior, have not gone away yet either. His levels were very high so we were told it could take up to a year to get them normal again, but it is so frustrating that the pain and other symptoms haven't dissipated yet. I'm so sorry you're going through this. I believe we are going to eliminate dairy next to see if he improves. It can be so discouraging when you think you've found the root cause only to be let down again.

I'm sorry your son is going through this. You're right, it's very discouraging. I've been gluten free for a year now and I'm still vomiting almost daily. It's very troubling and stressful to deal with. I wish you and your son the best. Please let me know if eating dairy free helps.

[aimeetheceliac]

  On 11/6/2014 at 3:47 AM, cyclinglady said:

Have you had another HIDA scan? I know you had your GB removed, but did they re-check your bile duct? My Aunt had to have a stent inserted after her gallbladder removal. Her duct kept collapsing and causing GB "like" symptoms. Bile was not moving through properly. I am not sure a CT scan would pick it up. Nothing but the HIDA caught my non-functioning gallbladder (GB).

Here is long-shot theory.....Are you getting glutened by accident? Is there gluten in your house? Who prepares your food? What about lipstick, sunscreen, lotion, dog food, etc.

I never had my bile duct rechecked or had a second HIDA scan but I'll for sure look info it. I'm very careful about eating gluten free. I love with my mom who eats gluten so there is gluten in my house but I have my own shelves in the fridge, freezer and pantry and am very careful about cross contamination so I don't think I'm getting glutened.

[Noobette]

My son missed 15 straight weeks of high school due to unrelenting nausea. He had lots of testing, all normal. There are a bunch of "functional" GI disorders ("functional" meaning that there is nothing structurally wrong and usually nothing that will show up on a test). His various diagnoses included functional abdominal pain, functional dyspepsia, and abdominal migraine. If you are having frequent vomiting, you could fit the criteria for cyclic vomiting syndrome.

These disorders all seem to overlap substantially, are treated similarly, and are unfortunately not easy to treat. My son improved, but is still nauseated most days.

If you can't find anything wrong with testing, look into the functional disorders. I hope you find some better answers, though - what you are going through sounds just awful. Hang in there!

[kenlove]

HI, I feel for you,  I threw up  every morning for 6 months  and then it stopped -- they never figured out why but only that at a certain stage the stomach could not handle anything.   Still even when i didnt  eat it would happen.  Sure hope you can figure it out. good luck

  On 11/5/2014 at 6:38 PM, aimeetheceliac said:

Hi everyone.

 

My name is Aimee, I'm 19 and I live in Ohio.

 

In May 2013, I began throwing up. It started out randomly but soon began to happen daily. In September 2013, I went to the Cleveland clinic. They said I had some type of virus and did not run any tests. In October 2013, I went to a local gastroenterologist who ordered an upper endoscopy. It showed I had celiac disease. A blood test confirmed it. The diarrhea I’ve had for years finally stopped after I began eating a gluten free diet, but the nausea and vomiting continued. In February 2014, I had a gastric emptying test; the results were normal. In April 2014, I had a HIDA scan, which showed that my gallbladder contacted abnormally. In June 2014, I had an ultrasound of my abdomen, which showed my gallbladder full of stones but everything else was normal. In July 2014, I had a laparoscopic gallbladder removal surgery. The first day or two after the surgery I was not nauseous, but by the end of that week it was as if I hadn’t had the surgery at all. Later that month, I went to the emergency room because I vomited 6 times in a day. I had a CAT scan of my abdomen in the ER which was normal. In August 2014, I had a small bowel series and an MRI of my brain done, both of which were normal. In October 2014, I went to another hospital. They did not feel any of the tests that had been done were worth repeating. They did not conduct any additional tests either, except for a blood test that showed by BUN levels and BUN/creatinine ratio were low. About a week ago, I vomited blood. There was also blood in my stool. I went to the emergency room. They did a rectal exam which was normal. They also put a tube down my nose into my stomach to apply suction to check for blood in my stomach. That test was normal as well. There was no internal bleeding. They determined that the blood I threw up was from a small tear in my esophagus.

 

The medications I have tried for nausea/vomiting include Phernergan, Reglan, and Zofran. Phernergan helped slightly, Reglan did not help at all, and Zofran helped the best out of the three but still did not help very much.

 

I am about running out of hope. I don't know what to do and I'd like to know if any other celiacs have similar symptoms, even though they are following a gluten free diet.

 

Also, for some reason the nausea/vomiting is more prominent in the morning. (No, I'm not pregnant.)

[aimeetheceliac]

  On 11/6/2014 at 1:23 PM, Noobette said:

My son missed 15 straight weeks of high school due to unrelenting nausea. He had lots of testing, all normal. There are a bunch of "functional" GI disorders ("functional" meaning that there is nothing structurally wrong and usually nothing that will show up on a test). His various diagnoses included functional abdominal pain, functional dyspepsia, and abdominal migraine. If you are having frequent vomiting, you could fit the criteria for cyclic vomiting syndrome.

These disorders all seem to overlap substantially, are treated similarly, and are unfortunately not easy to treat. My son improved, but is still nauseated most days.

If you can't find anything wrong with testing, look into the functional disorders. I hope you find some better answers, though - what you are going through sounds just awful. Hang in there!

Thanks!! My current gastroenterologist thinks it could be functional but I tend to disagree. I feel like something has to be causing this.

[larry mac]

Hi Aimee, I'm sorry I don't have any advice for you. However, I'd like to add my support to keep searching for answers. You're far too young to be having these serious health problems. I too suffered for over two years before I finally found a doctor that had the expertise to help me. I didn't have the same problems as you do, and I feel for you. But I lost over 40 pounds and had constant gastrointestinal distress before I was successfully diagnosed. I'm sure there is a light at the end of the long road to wellness. You will get there!

 

I will be praying for you, and hope you find a Doctor that can help you finally find some relief, and happiness.

 

best regards, larry mac