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

Hello, I'm New And I'm 90% Sure I Have Celiacs.

Rob Amsterdam

Recommended Posts

Rob Amsterdam Newbie
Rob Amsterdam
Posted

Hello I am a 30 year old male and only recently awakening to the fact I might have celiac's disease.

 

As a kid I always was senstive to bad foods, I hated birthdays because they would make me tired and feel sick. It was an association I made in my head, but now it becomes clear it wasn't the birthdays but the bad foods.

 

When I was older I developed acne which became worse and worse, at the age of 16 I became sicker and sicker and when I was 18 I was diagnosed with 'Autoimmune hepatitis' the doctor put me on prednisone for more than a decade. I had psychological problems, "derealisation" anxiety depression, couldn't gain weight. Was tired all the time despite my liver numbers being back to normal. I got off the steroids and developed the most horrendous eczema anyone would ever think. Months later my liver numbers would flare up and I was put back on prednisone. This repetative thing went on for 12 years.

 

In 2012 things got worse, Each night I would lay awake with pain, I couldn't sleep until 4am in the morning. I medicated with cannabis oil to get me to go to sleep.

 

Doctors ran so many tests they told me my liver was ok, and it was all psychological. I lost around 15 kilograms (40lbs) in 2 months and I thought I had cancer and was dying, I has blood in my stool every other day and mucous every day, my nails turned pale, my hair fell out, both body as head. Lost my job, my apartment had to move back to my parents, and was almost submitted in a psychiatric clinic.

 

I had an endoscopy and all kinds of ultrasounds and MRI's and everything was negative for pathologies. Even negative for celiacs disease.

 

Last year I was diagnosed with subclinical hashimotos, with elevated TSH and normal T4.

 

I was constantly dizzy anxious depression, unable to think clear and unable to gain weight.

My calves armes, buttocks all were covered in eczema after I withdrew prednisone.

 

This was when I tried a gluten free trial.

 

It was like a miracle. My eczema went away so fast, my livernumbers stayed normal despite being off prednisone the stomach pain went away, and the fatigue. I still have the foggy thinking but I guess that might be my thyroid or the medication I take for my thyroid. I am hoping that I can withdraw that too in the future.

 

I'm so thankful for figuring this out, I think it has saved my life.

 

But I am puzzled and a bit disappointed in doctors that they weren't able to diagnose me with all the tests theyve done. It's been a long journey but I can see the light!

 

Just wanted to share this.

 

Rob

 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Steroids can mess with the Celiac blood tests.

Open Original Shared Link

If eating gluten-free makes you feel better, that is what you should do.

BlessedMommy Rising Star
BlessedMommy
Posted

 

 

If eating gluten-free makes you feel better, that is what you should do.

 

I agree. If you've exhausted all testing options to no avail, then it's fine to follow a strict gluten free diet, if that's what works to keep you a symptom free member of society. Nobody needs their doctor's permission to go gluten free.

Rob Amsterdam Newbie
Rob Amsterdam
Posted
  • Author

Thanks for the replies.

 

I have been trying to raise more awareness in Autoimmune hepatitis forums and facebook groups, that at least a significant percentage of people can have celiacs disease as the root cause of their liver disease.

The medication normally used for liver diseases is quite taxing and can have a lot of side effects, immune suppressants and steroids.

 

Many doctors and herpetologists don't always connect all the dots, but literature is quite clear on the subject that AIH can be put or kept in remission with a gluten free diet.

 

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the replies.

 

I have been trying to raise more awareness in Autoimmune hepatitis forums and facebook groups, that at least a significant percentage of people can have celiacs disease as the root cause of their liver disease.

It would seem like they would be more aware of the connection since it is not unusual for us to have wonky liver panels prediagnosis. My doctors were convinced I drank but not admitting it to them. My panels went back to normal after a time gluten free. If we had known the connection sooner perhaps my brother would still be with me as his liver was gone by his midteens.

Thank you for trying to educate those with AIH. I hope they listen and at least get tested. 

etbtbfs Rookie
etbtbfs
Posted

Guess things havent improved all that much. Took 12 years to diagnose me, and that was from a naturopath.

nvsmom Community Regular
nvsmom
Posted

Welcome to the board, Rob.  :)

 

That's a shame that doctors did not connect the dots for you years ago.  Liver disease is not uncommon among celiacs... they really dropped the ball there.

 

Chronic liver disease can actually cause a false positive tissue transglutaminase test (tTG IgA or tTG IgG) ... they really should have caught that.  :(

 

Glad you are feeling better and have taken steps to improve your health.

 

Oh hey, maybe post your story about the link between liver issues and celiac disease in the Related Disorders and Research board on this forum.  I'm sure it will help others someday.

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

Celiac.com Sponsor (A8-M):


Rob Amsterdam Newbie
Rob Amsterdam
Posted
  • Author

Thank you guys for the replies. There's a lot for me to digest -pun intended- but for now, being gluten free is pretty awesome, I have slept 5 nights in a row now without any pain or discomfort, it's amazing. I hope the brain fog will lift soon as well and I can pack on a few more kilo's/pounds cause I'm around 15kg below my ideal weight.

 

And ravenwoodglass so sorry to hear you have lost your twin brother to AIH when you were younger, I cannot imagine what kind of impact this must have had on you and your family's life.

 
MomBTired Newbie
MomBTired
Posted

You get a skin biopsy done?

  • 2 weeks later...
Rob Amsterdam Newbie
Rob Amsterdam
Posted
  • Author

Hi I just wanted to give an update.

 

It's been 2/3 weeks now on a strict gluten free diet and I feel amazing, I feel completely normal. Haven't had any more pain and the dizziness and brain fog and anxiety and depression went away completely.  :D

BlessedMommy Rising Star
BlessedMommy
Posted

Good for you! :) Nobody needs permission from their doctor to eat gluten free! It sounds like it is really working for you! Great job!

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to hmkr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Celiac Test Results - Thoughts?

      Yes, that's the one. IGA Quantitative. What is the reference range given for that one? If no reference range was given, is there another notation associated with it indicating it was either low or high or neither? If not, I would assume your score does not indicate IGA deficiency.
    2. hmkr
      - hmkr replied to hmkr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Celiac Test Results - Thoughts?

      The IGA tests 5 years ago were: Transglutaminase IGA (EMY IGA) (CENT-tTG), <2 Immunoglobulin A (CENT-IGA), 246 IgA Quantitative was done last month, that was 261. Is that the one you mean?
    3. trents
      - trents replied to hmkr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Celiac Test Results - Thoughts?

      When you say a GI doc did an IGA five years ago and it was negative, which IGA measure do you speak of. There are several possibilities. Do you refer to the tTG-IGA? Have you had a total IGA test done? It isn't a test for celiac per se but can establish whether or not you are IGA deficient. If you are IGA deficient, it will drive individual IGA test...
    4. Scott Adams
      - Scott Adams replied to hmkr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Celiac Test Results - Thoughts?

      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests...
    5. hmkr
      - hmkr posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Celiac Test Results - Thoughts?

      I had several celiac blood tests done at a rheumatologist last month. I've had many possible symptoms over the last 23 years, including GERD/LPR, constipation, and recently joint stiffness and pain in my hands. It all started during my first pregnancy. 1/160 ANA back then as well as now with no autoimmune diagnosis. I've had undiagnosed high fevers, swollen...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,813
    • Most Online (within 30 mins)
      7,748
    New NCGS
    Newest Member
    New NCGS
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac Test Results - Thoughts?

      By trents · Posted

      Yes, that's the one. IGA Quantitative. What is the reference range given for that one? If no reference range was given, is there another notation associated with it indicating it was either low or high or neither? If not, I would assume your score does not indicate IGA deficiency.
    • hmkr
      Celiac Test Results - Thoughts?

      By hmkr · Posted

      The IGA tests 5 years ago were: Transglutaminase IGA (EMY IGA) (CENT-tTG), <2 Immunoglobulin A (CENT-IGA), 246 IgA Quantitative was done last month, that was 261. Is that the one you mean?  
    • trents
      Celiac Test Results - Thoughts?

      By trents · Posted

      When you say a GI doc did an IGA five years ago and it was negative, which IGA measure do you speak of. There are several possibilities. Do you refer to the tTG-IGA? Have you had a total IGA test done? It isn't a test for celiac per se but can establish whether or not you are IGA deficient. If you are IGA deficient, it will drive individual IGA test scores down and can result in false positives. The tTG-IGA should always be accompanied by a total IGA test. When people are IGA deficient and actually do have celiac disease we often see it detected by the IGG tests. The same can be said if they have been skimping on gluten previous to the blood draw and, IMO, negatives in the IGA test spectrum with positives in the IGG spectrum can also point to NCGS or NCGS transitioning to celiac.
    • Scott Adams
      Celiac Test Results - Thoughts?

      By Scott Adams · Posted

      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. I agree that if your biopsy ends up negative, that you still may need to be gluten-free, as you could be in the non-celiac gluten sensitivity area. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. Be sure to eat lots of gluten daily until your endoscopy, otherwise you could get false negative results.    
    • hmkr
      Celiac Test Results - Thoughts?

      By hmkr · Posted

      I had several celiac blood tests done at a rheumatologist last month. I've had many possible symptoms over the last 23 years, including GERD/LPR, constipation, and recently joint stiffness and pain in my hands. It all started during my first pregnancy. 1/160 ANA back then as well as now with no autoimmune diagnosis. I've had undiagnosed high fevers, swollen lymphs nodes, ear pain, miscarriages, to name just a few more symptoms. I can't help but be upset at the many doctors I've been to that have missed this. A GI doctor only did the IgA 5 years ago, which was negative then too, and didn't do a biopsy as a result during an endoscopy shortly after. Deaminated Gliadin IgG Antibody test was 90, >15 being abnormal.   Deaminated Gliadin IgA Antibody, negative Tissue Transglutaminase IgG Antibody, negative Tissue Transglutaminase IgA Antibody, negative I'm scheduled for a biopsy at the end of January. The new GI doctor thinks if not celiac, I will still need to be gluten free the rest of my life due to the antibodies my body is producing. I feel like it's got to be celiac. I've been consuming gluten every day to prepare for this test. It can't come soon enough.  Thoughts on that IgG being positive and the others negative? I haven't gotten a clear explanation for that yet. Thanks in advance for any input!! 
×
×
  • Create New...