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

Starting To Wonder (List My Symptoms)


EverKiy

Recommended Posts

EverKiy Rookie

Ok so I'd never heard of celiac disease until my oldest daughter was tested when she was 2.5 years old she's now 5, the doctor wanted to test her cause she's tiny like at 5 almost 6 shes now 38lbs and 40 inches tall, she also would get vomiting and diarrhea every time she ate any kind of breaded chicken... All the tests came back negative (wondering if she was just to young?) she's had a lot of issues the past 1.5 years (cronic constipation, bad abdominal pain, vomiting, fevers that pop up for no reason etc) donno if all that fits in but drs do bring up celiac often but seem stumped and we are waiting to get in at the children's hospital near here cause in fed up with the lack of answers and the she's just constipated I'm getting from local doctors.... But moving on to myself.

Ok so the past 2 ish years I've been dealing with issues of my own and I'm starting to wonder if I may have celiac myself... So what I've experienced myself is.. Flem build up in my throat (always feel like something it stuck in there), loose/floaty bm(tmi sorry), nausea, insomnia/inability to stay asleep (this ones been going on for many years), I'm tired 24/7 no matter what, I am b12 deficient, I have as my dr says mild reflux, heartburn, I also suffer from depression and 3 different anxiety disorders I also had an aunt who had celiac ..

I just want thoughts/ opinions on this before I head off to the drs about it, was also wanting to see if it's be better if it sounds like this could be celiac if I should go get the tests done or just try going gluten free? I know one thing that makes me lean towards the drs is my oldest who has issues and I also have a 2 year old so I'd know for sure that they both should be tested/watched.... Any input/advice would be more then welcome


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Do go get yourself tested as your symptoms do sound like they could be celiac. Do not go gluten free yourself or have your daughter go gluten free until all celiac related testing you want to have done is finished. After that go gluten free for a bit to see if it helps.

mamaw Community Regular

I agree  with  Ravenwoodglass.... Call  around  your  area  to  try to find  a  doc  who  understands celiac.. A  hard  find  but  they are  around... If  you  would  post  your  area we  could  help you  find a  "special "doc.....Most  still know  next  to  nothing  about  celiac... and  another  thing  I would  check out  is  a  thyroid  panel  done..( not  just  the  TSH)...  

EverKiy Rookie

I'm in ontario canada, my dr seems to have a bit of an understanding of it, she's the one who first brought it up for my daughter and explained it to me, and we were sent to a dietitian to go over food while waiting for the test results for her but then never needed her after being told it wasn't celiacs ... I'll make an appt with my dr and suggest testing myself for it, and depending how that goes get my daughter retested for it.

1desperateladysaved Proficient

Look into it for sure!  I hope this will lead to a more energetic life for you and lifelong help for your daughter!  Make sure to get a full panel for the celiac test.  If you do the thyroid that needs to be a full panel also.  From memory(so I could miss something) Thyroid panel includes TSH, T3, T4, reverse T3 and Reverse T4 and also thyroid antibodies.

 

You may want to get started on a gluten free multi-vitamin and or vitamin B complex if you haven't already.  I like natural brands and not the cheapest.

 

Dee

EverKiy Rookie

I will looking to gluten free multivitamin as have been taking multivitamins for years, I made a doctors appointment today for the 30th (next one available) so we shall see what the dr wants to look into, I'm also going to keep a food journal and how I feel/what happens so I can show her what all is going on and help me remember what all I need to talk with her about, last time I went I only brought up the upset tummy so she stuck me on an antacid cause I have reflux, which did help a bit but not as much as I feel it should have and once I was off them nothing had changed

mamaw Community Regular

For  the  tummy  try Digestive  enzymes  & probiotics..... you will be  pleasantly surprised....


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



Celiac.com Sponsor (A8-M):



EverKiy Rookie

Any recommendations for enzymes and a probiotic

mamaw Community Regular

there  are  many  but I use  digestive  enzymes    called  DIgest Gold......I use  several probiotics as  one  should switch  brands   occas.....And  everyone  has  to find  what  works for them... I use  Dr  O'hirra's  twelve  point  professional  formula,  align, pearls...floragen... Others  have  luck  with other  brands  so I'm sure  some  will also tell you what  they use...some  just  don't  work for me....  

Digestive  enzymes  before  meals.. Probiotics   without  food  in the gut  for several hours....

GFinDC Veteran

Hi,

 

You could have the gene tests done to see if celiac disease is a possibility.  The other testing they can do is an endoscopy to take biopsy samples of the lining of the small intestine.  They check  the biopsy samples under a microscope for damage to the villi.

 

Before you  go to the doctor it's a good idea to write down your symptoms to hand the doctor.  That makes it less likely to forget something.

  • 4 weeks later...
Nebraskamommy Rookie

I would find a holestic dr to run additional testing, including looking for vitamin and mineral defincies. My 3 year old was dianosed by a holestic dr in Jan and we have since seen 2 Ped GI drs, and the holestic dr knew more about Celiac then the GI drs did. Just because her tests came back negative doesn't mean she's not sensitive to gluten. Poor girl.

DO NOT go Gluten Free until you've had your blood tests and a scope. I imagine you will feel a whole lot better after stopping the gluten, and therefore if you stop the gluten before finishing the testing you won't want to go back on gluten to get the tests done.

Archived

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

  • 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. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,466
    • Most Online (within 30 mins)
      7,748

    Mike G Army EOD
    Newest Member
    Mike G Army EOD
    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

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.