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

Diagnosed Just Now

Josep

By Josep
in Coping with Celiac Disease

Recommended Posts

Josep Newbie
Josep
Posted

Good evening everyone,

It's my first post here so I might as well introduce myself. I'm 22 years old and from Portugal. 
Ever since I had an appendicectomy a year ago, I began having loads of symptoms such as loss of focus, memory, constipation, bone pain, speedy heartbeats and the normal symptoms of celiac. 

The situation has worsened (I stopped being able to go to my track practice because I was always fatigued and to the gym as well). My family physician did some analysis and said I had iron-deficiency anemia and gave me some iron supplements to deal with it. As expected they did nothing.

Thankfully, I'm a Pharmacy Student and had a Pathophysiology class this semester and we spoke about celiac disease. I went to my physician and asked if it couldn't be that....she said that was impossible since I would need to have it since little and I had to have diarrhea and the normal old doctor mumbo jumbo about celiac. Well, since I'm stubborn, I asked to go through an endoscopy/colonoscopy (since she wouldn't prescribe the antitransglutaminase analysis) and I received the results today: turns out I have celiac disease (Marsh Stage 3B) and a bit of chronic gastritis (I guess it's connected with the celiac disease) and lymphoid hyperplasia (Guess it's also connected).

So I posted this topic for two reasons:

-First, to thank everyone around here for this brilliant source of information about my new condition which is much more advanced than anything in my country where celiac disease is still seen as that disease where people must have diarrhea and whose all symptoms are gastrointestinal.

-Second: I have an appointment with my physician tomorrow and other than punching her face with the pathology report, I would like to know which  blood analysis should I ask for (other than thyroid ones) to evaluate my body condition.

Thanks in advance ;)

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

Hello &  Welcome

I  would  ask  for  the  thyroid  panel  not just  the TSH,  B-12, Vitamin  D, A1c,  glucose, lipid  panel, & CBC  for  sure....

 

Make  sure  you  are  not  getting  the hidden  gluten   &  also  get  your  kitchen  for  scratched  pots &  pans,  plastic  utensils cutting  board, colander, toaster  &  so on  where  gluten  hids....

GlutenStinks15 Explorer
GlutenStinks15
Posted

I agree with mamaw --  "I would ask for the thyroid panel not just the TSH, B-12, Vitamin D, A1c, glucose, lipid panel, & CBC for sure...."

 

 

 

Also make sure they check your Folic Acid. My nutritionist told me that Celiac could cause a deficiency.

 

Good luck!!

Josep Newbie
Josep
Posted
  • Author

Thanks for the advice, I will ask for those then ;)

Josep Newbie
Josep
Posted
  • Author

Also another doubt: Since I didn't do the antitransglutaminase test, can I truly say I'm celiac or diseases other than celiac disease can cause villous atrophy Marsh 3? It's just to know if I should ask the doctor to do the test even if the biopsy is already positive. Thanks!

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

welcome to the forum  :)

 

here is a research paper from the World Gastroenterology Organization on Celiac Guidelines.  Print a copy for your doctor as there is a lot of great information in it  :)

 

Open Original Shared Link

 

A full celiac blood panel is:

DGP iga/igg

TTG iga/igg

EMA

Total iga serum

 

Thyroid Panel:

TSH

Free T3

Free T4

TPO antibodies

am I missing any??

 

Vitamins/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamins B-6 and B-12

Vitamins A, D, E, K

Magnesium

Zinc 

Copper

1desperateladysaved Proficient
1desperateladysaved
Posted

I just wanted to say that I am happy that you were in the class talking about celiac!  I believe the endoscopy is considered and absolute diagnosis. The above sounds like it will give ideas what else to look for.

 

Happy for you,

 

Diana

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

Celiac.com Sponsor (A8-M):


Josep Newbie
Josep
Posted
  • Author

Thanks everyone for all the advice!

@1desperateladysaved: Yes, it was really lucky that we spoke in class about celiac and I had the idea of getting tested for it, regardless of my doctor's stubborness, otherwise I would still be misdiagnosed (most people in my family were saying my symptoms were all due to stress and hypocondria and were planning on scheduling a psychiatrist soon :S)

billybobhobw Newbie
billybobhobw
Posted

I have been told numerous times it was all in my head. There really is a lack of education about celiac and its side effects. My wife really does not get it. For me the diet has made a world of difference in a short period of time. I have been gluten free for just two weeks and my stomch is noticeably better. Your not crazy and now you have proof.

mamaw Community Regular
mamaw
Posted

billybobhobw

 

Glad  you  are  feeling better. But  you need to get your  wife  on board  if  she is the  family  cook....There   is  plenty  of  documentation  papers  on  the  net  to  help  convince  her  . That  is  if  seeing  you  better  is not  enough proof  for her...

Families  can be  the  worse   but  please  do not  let  that  deter  you  from  a  happy  healthy life...

And  if  you have  children please  get  them  tested....

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. knitty kitty
      - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

      That test is saying that your daughter is not making normal amounts of any IGA antibodies. She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses. She is deficient in total IGA, so the test for antigliadin antibodies is not valid. The test was a failure. The test only works if all different kinds of antibodies...
    2. knitty kitty
      0

      Vitamins I Take

    3. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

      @hjayne19, So glad you found the information helpful. I know how difficult my struggle with anxiety has been. I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex. It contains the easily activated forms of B vitamins needed by people with the MTHFR...
    4. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

      Welcome to the celiac.com community @pothosqueen! Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run...
    5. pothosqueen
      - pothosqueen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,993
    • Most Online (within 30 mins)
      7,748
    Tchudi
    Newest Member
    Tchudi
    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

    • knitty kitty
      Help understand results

      By knitty kitty · Posted

      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Positive biopsy

      By trents · Posted

      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
    • hjayne19
      Mallorca Guide

      By hjayne19 · Posted

      This is great thank you very much @Scott Adams
×
×
  • 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.