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

Post Diagnosis and Diet Change and feeling much worse.


BMking

Recommended Posts

BMking Newbie

Hello everyone! This is my first post so please bear with me. To give a little background I am trying to figure out whether or not my Celiac Disease recovery seems abnormal and looking to see if anyone might have any insight. I originally went to the Dr. over the summer for sporadic stomach pain and feeling hungry even when I ate. It was always the worst in the morning, I would wake up some days with 3/10 pain. After seeing the Dr. I was referred to a GI who wished to conduct an EGD and colonoscopy. Colonoscopy had no results but EGD showed the signs of celiac and a biopsy later confirmed it. I also had three duodenal ulcers and GERD as well. Sit down with GI and he explains everything, I get medications for the ulcers and GERD and immediately go on a gluten-free diet. The confusing aspect of this all was that I never really had that severe of symptoms, I would have the stomach pain maybe one or twice a week and it was not incredibly painful or debilitating. But after going gluten-free I had no symptoms for around a month and then with no change whatsoever have been experiencing severe stomach pain day in day out for two months straight. I immediately cut out dairy and processed foods as soon as it started to try and help but it has done nothing. When I wake up in the morning I sometimes regurgitate stomach acid. But overall I just have much much worse pain than I had before I went gluten-free. I went back to the GI and he confirmed that I have Celiac but had little to no answers for me other than to prescribe me Reglan and tell me not to eat right before sleeping. I have done this and tried to eliminate different food groups to see if one or the other is giving me issues and nothing has changed. I just can't believe that after removing gluten my issues have gotten about 10x worse. I know healing takes a while, but for me to keep getting worse is concerning. I am open to any and all advice, especially suggestions of what I could discuss with the GI. He just keeps telling me I have a severe case of Celiac but really ignores me when I try to seek out other reasons for my issues. Thank you, everyone!

TL;DR- Original pain wasn't that bad, went gluten-free and it has gotten much worse. Am for sure Celiac and have cut out dairy. 


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



Celiac.com Sponsor (A8-M):



healthysquirrel Enthusiast

So sorry you are feeling unwell, Is it possible to try another treatment for gerd?  Try a low FODMAP for a few months and see of you feel better. If it works, then you can reintroduce one food at a time to see which one is bothering you.

the first few months for me were brutal in terms of digestion, whereas I my digestive symptoms were not was bad before going gluten-free. It was surprising, but then i realised I had food allergies and happened to be eating way more of those foods immediately after going gluten-free.
As soon as I cut out stress from wondering what to eat by always having 2 meals I prepared ready in my fridge, it helped a lot.

Please don't eat those highly processed gluten-free foods with ingredients you can't pronounce, they are absolute trash and not what you need at the moment. Try using those only for emergencies. A whole foods diet, seeing if you have any food allergies and low FODMAP could help you.

It helped me, I am still having non digestive symptoms due to decades of low absorption, but even that is getting better, so hang in there!

I don't know what meds you are on, but careful of the side effects. Please go see a proper nutritionist. It took me a while, but I found one who is also a doctor, he prescribed me vitamins and minerals that were very easy to digest (liquid, powder)  Natural Anti inflammatory and alkaline powder. 
Keeping a food diary can help you pin down what is going on. I know it is very hard to leave certain foods behind, but I promise you it gets easier as soon as you start to feel better :)

Hope you find the help you need here BMKing! (hilarious name by the way)

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    2. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,920
    • Most Online (within 30 mins)
      7,748

    MLSpade
    Newest Member
    MLSpade
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.