Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Fluttering Symptoms


Clemo66

Recommended Posts

Clemo66 Newbie

I have flagged up for Celiac disease in bloods, i have fluttering in my left side and lower abdomen is this normal? Im still eating gluten as i was told too but this is happening and massive swelling of my stomach ?


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
43 minutes ago, Clemo66 said:

I have flagged up for Celiac disease in bloods, i have fluttering in my left side and lower abdomen is this normal? Im still eating gluten as i was told too but this is happening and massive swelling of my stomach ?

I am sorry that you are you are unwell and uncomfortable!  The flutter could be gas as it sounds like you are bloating.  A common celiac symptom.  Take this time to eat all your old favorites.  That is what I did.  For example,  I bought cookies, had a few and then gave away the rest.  That way I would literally go through all my favorites within weeks.  I was a fiend about sourdough and I baked like crazy.  

Then I had the endoscopy, went gluten free and never looked back because feeling better trumped over consuming gluten.  I also converted all my favorites into gluten free versions, so I never have missed out on anything yummy!  

Clemo66 Newbie

Yes im going to do exactly that and then get some new cookbooks. To be fair i like Mediterranean food and i believe thats good for Celiac Disease.   I will miss bread though its my favorite thing ever thats gutting

cyclinglady Grand Master

The only gluten item I miss and have not been able to replicate  well has been sourdough bread.  It is a small sacrifice to pay for improved health.  

Keep eating gluten until the endoscopy is done per your doctor’s instructions.  The endoscopy is the gold standard in diagnosing celiac disease.  It can set a good benchmark for future testing and rule out other illness like H. pylori or Crohn’s.  Some folks have huge wait times (like a year), others are gravely ill, or some do not have the financially means to get an endoscopy.  If you can, get it.  You will not regret it.  

In the meantime, you can eliminate lactose (dairy).  In celiacs, villi damage prevents the releasing of some enzymes that help to digest lactose (milk sugar).  It is the most common intolerance.  Test it out.  You might find some relief.  The good news is that it is often temporary.  With healing you can get it back!  

Clemo66 Newbie

I have crohns already 25 years i have had surgery too.  This feels like a bad flare of that but the fluttering sets it apart. Its actually that driving me insane it feels like pregnancy flutters and is driving me nuts.  Im in the UK so treatment is free for endoscopy well we pay national insurance through our wages for it.

 

Cant wait to be diagnosed as im happy to cut it out if im well again  x

cyclinglady Grand Master

Gluten free might be your best bet after all testing is complete.    There was a recent very small study done out of Scripps in San Diego.  Researchers wanted to see if the hype over the AIP diet  ( Autoimmune Protocol) was valid.  They tested UC and Crohn’s patients who stayed on their current pharmaceutical treatments while on the diet.  After six weeks, 76% went into remission!  Amazing!  

Open Original Shared Link

The AIP diet is paleo in nature and is gluten free.  So, even if your biopsy for celiac disease is negative, I would trial the diet!  My niece has Crohn’s and is doing well so far.  She is a bit too young to try a restrictive diet, but I am hoping she might change her mind.  

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,415
    • Most Online (within 30 mins)
      7,748

    Leslie Smith
    Newest Member
    Leslie Smith
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I think you know enough to conclude that your son either has celiac disease or NCGS (Non Celiac Gluten Sensitivity). As soon as you removed gluten from his diet his stools firmed up. It is also very common for celiacs to be intolerant of dairy and soy, so that is another piece of corroborating evidence. If I were you, I would consider getting your sone genetically tested for the genes we know are associated with celiac disease. There are two main genes looked for, HLADQ2 and HLADQ8. Having either or both provides the potential for developing celiac disease. But since about 40% of the general population have one or both of the genes it cannot be used to diagnose celiac disease. But it can be used as a rule out measure if both are absent, thus pointing one in the direction of NCGS. If one or both are present, there is the possibility of either celiac or NCGS. NCGS is 10x more common than celiac disease by the way. The two conditions share many common symptoms. The difference being that NCGS does not damage the lining of the small bowel as does celiac disease. Celiac disease is actually an autoimmune disorder. At any rate, both conditions require a gluten free diet so, at the end of the day, that is the antidote for both. Some experts feel that NCGS can be a precursor to the development of celiac disease.  I would also make mention of the fact that once gluten is removed from the diet and then added back in for the gluten challenge, reactions are often more violent as all tolerance has been lost.
    • cristiana
      Hello @Beck1430 and welcome to the Forum. I am sorry your little boy is going through this. Your question is an interesting one.  I would say the majority of posts I have read since joining this forum speak of a fairly quick reaction, and that has been my own experience.  The only major gluten hit I've had in more recent times resulted in chills, dizziness and vomiting about 2-3 hours after eating gluten.  It was truly horrible.  The fact that I vomited was new for me - I didn't get diarrhea which had been my classic reaction in the past.  It was as if in going totally gluten free my body has decided to react more violently to gluten, and quite differently.  Reactions can change over time - the fact that your son is reacting differently doesn't necessarily mean that gluten isn't the culprit. Anyway,  this study is interesting in that it states that it is possible to react 12 hours later. https://www.schaer.com/en-us/a/how-long-after-eating-gluten-do-symptoms-start#:~:text=A survey published in Alimentary,by 12 hours or more. I am afraid the only way you will probably know for sure is to repeat the challenge again, but I can completely understand your reluctance to do that.  I wonder if I can ask a couple of questions: Regarding the rash - has that also subsided since giving up gluten?   There are quite a lot of photos of dermatitis herpetiformis to see online, I wonder if you think what your son had/has was similar? Also, do you have coeliac disease in the family?  It is inherited and if you have others in the family, that could point more strongly to your son having coeliac disease. Cristiana
    • Beck1430
      Hi there, I'm looking for some advice for my 2 year old. After he turned one he started eating more foods like pasta and breadsticks and our supermarket finally started to stock a soy free bread (he has an intolerance to dairy and soy) so he started eating bread for the first time.  He began having foul, loose nappies, which I assumed must be teething, but this went on and on for a couple of months. Coupled with that, he started having patches of red scaly skin, a little bit like eczema but more widespread. He was also very tired and quite miserable. Given that it all coincided with him starting to eat a lot more gluten, his dietician recommended I eliminate gluten to see what happened. His poos immediately changed back to normal and were finally formed, and he’s been off gluten since last summer.   Fast forward 6 months and we did a wheat challenge yesterday, giving him a small breadstick at about 11am. He seemed ok through the day but 11pm he woke up vomiting, and was sick 3 more times over the course of 90 minutes and was writhing in pain on the floor crying about “poo” which never came, and today he has done a normal poo.  My two questions are: Is it possible that this was a reaction to the gluten if it came 12 hours after ingestion? Or is that too long to cause vomiting? I wonder if it’s more likely an unrelated bug but can’t work out where from as we’ve had a quiet week. Would there not be loose stools too if it was a reaction to gluten? Before going gluten-free, this was his main symptom!   If it could be the gluten that caused this, where do we stand with ever testing for coeliac? Now that I know more about the testing I don’t know why his dietician didn’t recommend we do that before removing it from his diet before. Seems cruel to make him ill for the sake of a test. Grateful for any pointers or advice. Thank you!   
    • ChrisSeth
      Okay thanks Scott. So based on my results will they order more tests to be done? Kind of confused.
    • Scott Adams
      Yes, this sounds right. Let us know when you find out your results.
×
×
  • Create New...