Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Vomiting With Celiac?

aimeetheceliac

Recommended Posts

aimeetheceliac Newbie
aimeetheceliac
Posted

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.)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

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 Collaborator
SMRI
Posted

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

cmjgpchicago Newbie
cmjgpchicago
Posted

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 Grand Master
cyclinglady
Posted

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 Grand Master
cyclinglady
Posted

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 Newbie
aimeetheceliac
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


aimeetheceliac Newbie
aimeetheceliac
Posted
  • Author

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 Newbie
aimeetheceliac
Posted
  • Author

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 Newbie
aimeetheceliac
Posted
  • Author

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 Apprentice
Noobette
Posted

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 Rising Star
kenlove
Posted

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

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 Newbie
aimeetheceliac
Posted
  • Author

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 Enthusiast
larry mac
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.