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

Recommended Posts

Josep Newbie

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

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

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

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

Josep Newbie

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

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

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

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.