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

Celiac? Desperate For Help!


Insurgo

Recommended Posts

Insurgo Newbie

Hi all. Should probably start by saying that this isn't regarding me, its for my now ex long term girlfriend.

 

After her suffering with various symptoms for about 2 years now I am doing a lot of investigation myself as the doctors seem more than happy to try and pump her full of pills for one symptom (depression) but haven't bothered to investigate the underlying cause. Here are some of her symptoms:

 

Depression

Fatigue

Appetite Loss

Weight Loss (she was always very slim to start with anyway)

Nausea (but very rarely vomiting)

Stomach aches

Excessive wind

Constipation

Fatty stools (Constantly)

Joint Pain

Ringing in ears

Occasional dizziness

Plus probably a load more that I can't think of!

 

I have paid to carry out some blood tests and have found that she is deficient in B12 after having an active B12 test and the result being 34 pmol/L so I know a few of those are at least partly caused by the B12 deficiency. Have also had her folate and Thyroid levels checked all which were ok. Previous doctor tests in August last year showed that her Iron, Kidneys and Liver are ok (although I don't know what tests exactly were carried out for Kidney and Liver, the doctor was very vague on the phone).

 

Does this sound likely to be Celiac disease to anybody else?

 

She has a doctor appointment lined up but due to the doctor being away and her work schedule we are waiting around 2 weeks to see him so in the mean time I have ordered a home Celiac test from here Open Original Shared Link. My first question is although the test claims to be as accurate as can be, should these tests be relied on?

 

Second question is, if she is diagnosed, is there a common time frame for these symptoms to lessen? The depression is one that we would like to know about specifically if anybody has any experience in the field!


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



Celiac.com Sponsor (A8-M):



Jmg Mentor

Second question is, if she is diagnosed, is there a common time frame for these symptoms to lessen? The depression is one that we would like to know about specifically if anybody has any experience in the field!

 

There are others here far better able to answer your first question. I can tell you that my depression started to lift within 3 days of eliminating gluten from my diet, if your ex is the same as me it would be one of the first, most noticeable changes, with others following in various time frames.  Hope that's of some help, although bear in mind it seems like everyone is different. Best of luck!

treesahope Newbie

YES! sounds like it can be Celiac.  Insist to the doctor (many are dismissive) that she is tested for Celiac.   Do not get off of 'gluten' until after all testing is done, the nurse told me to eat all the gluten filled foods possible the three days prior to the test.  Blood test.  Colonoscopy/Endoscopy, good luck.  You are a great friend to be helping, inquiring on her behalf.  It is an ENTIRELY NEW WORLD, when going off of gluten.  Brain fog lifts!  Energy you NEVER knew you never had comes, it is wonderful if this is actually her issue.  I hope her health issues are resolved. 

kareng Grand Master

YES! sounds like it can be Celiac.  Insist to the doctor (many are dismissive) that she is tested for Celiac.   Do not get off of 'gluten' until after all testing is done, the nurse told me to eat all the gluten filled foods possible the three days prior to the test.  Blood test.  Colonoscopy/Endoscopy, good luck.  You are a great friend to be helping, inquiring on her behalf.  It is an ENTIRELY NEW WORLD, when going off of gluten.  Brain fog lifts!  Energy you NEVER knew you never had comes, it is wonderful if this is actually her issue.  I hope her health issues are resolved.

3 days of eating gluten is probably not enough.

Open Original Shared Link

"Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

Prior to blood testing we recommend 12 weeks of eating gluten.

Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten."

treesahope Newbie

3 days of eating gluten is probably not enough.

Open Original Shared Link

"Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

Prior to blood testing we recommend 12 weeks of eating gluten.

Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten."

This is true.  3 days is not enough, but I had spent my 36 years eating gluten, no idea I had Celiac.  I was told to eat lots of gluten before my test, + the prior 36 years.  I have been gluten free since 2009.  I really like YOUR answer better than Mine.  Thank you.

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.