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

2 month recovery after eating gluten


Alicia1975

Recommended Posts

Alicia1975 Newbie

Hello.  I am feeling overwhelmed so I am reaching out :(

I have an 11 year daughter that was diagnosed with Celiac Disease 6 years ago and has recently eaten 2 gluten pancakes at a camp.  Sadly, once again, the recovery rate is so slow.  She ate the gluten 8 weeks ago and her symptoms are getting worse as they have done in the past.  After eating gluten she has a steady decline in health for about 3 months, with symptoms gradually getting worse.  Stomach discomfort worsens but more debilitating is the lethargy, dizziness, hot flushes.  The head symptoms start off hitting her at night and then between the 2-3 month mark they are with her most of the day.  It is really hard to watch and I feel helpless.  does anyone else have a reaction like this from gluten.  Thank you in advance :)


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Sadly, yes!  My symptoms ramp up slowly.  They are at their worse, it seems a few weeks after the gluten exposure and last for another month or two.  Overall, it can last three to six months for me!  Ugh!  

I try to eat easy-to-digest foods because eating anything causes abdominal pain.  I also become lactose intolerant and that takes months to resolve.  I miss my cheese!  My last glutening caused daily hives that lasted for six months and for the first time, I developed acid reflux!   Fatigue, depression and anxiety usually ramps up too.  Of course, I usually go in to visit my GI or allergist when symptoms are overwhelming and my antibodies (thyroid and celiac) are off the charts.  

This disease can very perplexing!  Symptoms can wax and wane.  Each of us are so unique!  

My heart goes out to you.  My 16 year old has tested negative so far, but I feel awful when she is sick and hurting and I know you feel the same.  

Because other autoimmune disorders can overlap, consider having her checked, because not everything is celiac-related.  It is one reason why I end up going to my doctor after a suspected glutening and confirming if my antibodies are elevated.  That and the fat that my symptoms are inconsistent.   Then I just wait it out and good health returns knowing that everything else is in order.  

  I hope your daughter feels better soon!  

Alicia1975 Newbie

 I am really sorry you struggle with this too.  It is really rough.  I thought it quite unusual the fact that her symptoms are worse weeks down the track.  Thank you so much for taking the time to share some of your story with me.  I cant tell you how helpful it is to hear that someone else has a similar experience as my daughter.   This disease is perplexing indeed.  My other daughter with Celiac Disease has very mild reactions after eating gluten. 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,355
    • Most Online (within 30 mins)
      7,748

    Bridgette Segraves
    Newest Member
    Bridgette Segraves
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      Also, Vera Salt and Ava Jane's taste SO MUCH BETTER. Not sharp, and i need to use a lot less. 
    • Beverage
      I've recently researched a lot about salt lately. Celtics sea salts have minerals, which have been tested to include aluminum, cadmium, iron, lead, and microplastics. I used to use Redmond salt, but it tests as having aluminum, iron, and lead. I finally settled on 2 clean salts: Vera Salt, which you can only order from their web site. Also Ava Jane's which I got from Amazon. These are now the only 2 I use.
    • Beverage
      I had horrible reaction to lisinopril, a severe cough that kept me up all night. The cough is apparently common. I did better with irbesartan, no cough, and it controlled my BP better too. 
    • trents
      Welcome to the forum, @JohannesW85! Your physician gave you bad advice in telling you to avoid gluten until the hospital calls you. Reducing gluten intake will invalidate celiac disease blood antibody testing but it will also invalidate the gastroscopy/biopsy if there is significant time involved between removing gluten and when the procedure is scheduled. The endoscopy/biopsy serves the purpose of checking for the damage caused to the lining of the small bowel caused by the inflammation inherent in celiac disease to that section of the intestines. If you remove gluten ahead of the procedure for a period of weeks or months, there may be enough healing of the intestinal lining to prevent detection of damage. Gluten is hidden in many manufactured food products that you would never expect to find it in. It can also be found in medications, health supplements and oral hygiene products. It is easy to eat a lower gluten diet by cutting out major sources such as bread and pasta but much more difficult to achieve a truly gluten free state. There is significant learning curve involved. Current recommendations for the "gluten challenge" in preparing for celiac disease testing are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a period of at least 2 weeks. But I would certainly extend that time period to make sure the testing is valid. You might also be dealing with NCGS (Non Celiac Gluten Sensitivity) rather than Celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.
    • JohannesW85
      Hello everybody!  I am a Swedish guy 39 years old with typ 1 diabetes. I signed up on this forum because I need som help with my problems with my stomach that have been going for 2 years mabey a little more.  My problems is following: I have egg burps, its taste like rotten eggs also called sulphur burps, and it’s so horrible. After the burps mabey, a 4-5 hours, I must have a toilet nearby because then I have diarrhea. And that can last for a day mabey, sometimes a couple of hours. When I have going to the bathroom and the diarrhea is over no more burping. After wards I am so tired and get sometime headaches. When I got these episodes I must call in sick to my work because I can’t work I am so exhausted.    I have been to my house doctor and have taken tests. I took blood samples gluten and lactose. I have also this week taken feces samples, that I am gooing to leave to the doctor at the end of this week so they can take it into the lab.    When i first visit my doctor is was not my regularly house doctor, and he sad mabey it’s gluten so stay gluten free and see if helps. Well, I did it and like for 10 days everything was so good, I hade some constipation but no burps or loose stools. But then after those 10 days my doctor called me and asked me If  I had taken a test for gluten, which I had but she said ok but it’s negative have you been eaten gluten when you did take the test and I said no, so the test was negative of course.  She also had looking over my blood samples and I have  ”Postive for HLA-DQ2, subtype DQ2.5 ”  And because I have diabetes typ 1 the doctor wanted me too to go the hospital to get a gastroscopy. I am wating for my time in the line for do that. I have also for a month now getting some kind of rash, it looks like blisters don’t know if I can upload a picture to show it?  I try my best to be gluten free, but this weekend I was out with some friends but I drank gluten free beer but also redbull with vodka and I got really drunk and mabey I got my friends glass and I had been drinking regular beer no gluten free.  My doctor said stay gluten free until the hospital calls you. So I am, but still it can take 4-5 days I got egg burps and then diarrhea, and I can’t for my life figure out how i got gluten in me. The only thing that 3 weekends in a row now, I have been drinking beer gluten free and booze.  The booze have also been gluten free. Still when the weekend have passed by it got new episodes of burps and diarrhea. I have also have this kind of episodes when I’m not drinking any alkohol. We have also clean out everything that is gluten in our home.  I feel so confused about this, I mean is it so easy to get gluten in your body?    Sorry for long wall of text I hope you had the time to read everything.   
×
×
  • Create New...