Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Diagnosed Just Now
0

10 posts in this topic

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 ;)

0

Share this post


Link to post
Share on other sites


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....

0

Share this post


Link to post
Share on other sites

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!!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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  :)

 

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

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

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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....

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      102,680
    • Total Posts
      914,400
  • Topics

  • Posts

    • Blood sugar, hunger, celiac
      Thanks for your reply. I'm not sure how much fat I'm having, I will check. That could be contributing. Yup I do know about the link between Type 1 and celiac. But when it was first discovered my blood sugar was high, my insulin was tested and it was high...actually it was double the normal amount. C-peptide was tested too and I don't remember exactly but I think it was slightly high? If I had Type 1 or LADA, wouldn't my insulin be lower? It is strange though how I have none of the risk factors for insulin resistance and/or type 2... And in fact I had been on a super healthy whole food, "anti-candida" diet for several years before my blood sugar suddenly went really wacko!
    • CALL TO ACTION: YOUR INPUT IS REQUESTED BY THE FDA ON GLUTEN-FREE ISSUES
      FDA proposed rule on gluten-free labeling of fermented or hydrolyzed foods: If you haven’t already, please take the time to comment on the rule. The comment period closes February 16. But this is truly a CALL TO ACTION.  Your input is needed. You have a voice, you are an advocate for the gluten-free community. Now is the time to stand up and be heard.  Your voice, your words, can help all of us stay safe when purchasing food labeled gluten-free.  Johnna’s Kitchen posted a sample letter you may find helpful http://injohnnaskitchen.com/2016/01/call-to-action-your-input-is-requested-by-the-fda-on-gluten-free-issues/ It takes almost no time at all to copy & paste Johnna's letter into the FDA comment site & it will help us all.
    • Chipolte New Marinade
      I don't think any of their food was " certified" gluten-free?  
    • "Pre-Celiac" & scared
      Is there anyone else "pre-celiac" and asymptomatic like me who has had long-term success without losing their mind and still enjoying eating out without feeling like you have to stay in a plastic bubble?  This site has been helpful to me these past months.   I don't have it "Yet" and I am scared.  Sorry this is long but I wanted to be thorough: Two years ago I started experiencing GERD (heart burn, pain under my left rib cage, and regurgitation).  After trying probiotics, kambucha, kefir, apple cider vinegar, aloe juice, eliminating chocolate, citrus, tomatoes, spices, cinnamon, mint, alcohol, not eating 3 hours before bed, I was no better. I got an endoscopy/colonoscopy.  The dr found gastritis and esophagitis.  No hernia, infection or ulcer.  He started me on PPI.  I got 99% relief.  After 6 months I decided to go off PPI.  After suffering for 3 months, I went back to dr and back on PPIs for a year.  Because I am young, 39, and the PPIs have side effects, he discussed surgery with me. I went to a specialist. All the tests showed my esophagus was normal but my lower esophageal sphincter was not closing properly.  I was a good candidate and decided on the MUSE, (Endoscopically stapling the esophagus to prevent reflux) When the specialist did his endoscopy (1 year after previous one and before I was on PPIs regularly)  he saw villi damage that looked like textbook Celiac.  HUH?  I don't have ANY symptoms.  No cramps, vomiting, diarrhea, bloating, gas, discomfort, NOTHING.  He took biopsies and the results were "non-specific" perhaps "clinically latent celiac sprue" or a number of other things. So I took blood tests.  The celiac gene test was "susceptible" and I had "high" antibodies, but not positive.  Dr said go gluten-free to prevent  celiac. Did the PPIs cause the villi damage because I couldn't absorb the wheat properly and triggered celiac in me?  It sounds reasonable.   I wonder if now that I have had the MUSE and may be able to stop PPIs, will I be able to digest gluten better? Very interesting.  I plan to call a celiac specialist where I live to discuss this with him. I have not eaten gluten intentionally for 2.5 months now.  It did not help my GERD before the surgery.  Dr said they were unrelated anyway.  I am concerned about CC, breathing in, and accidental ingestion, but since I have no symptoms, I can never tell.  So I take glutenease when I eat out and glutamine powder to try to repair the damage.  How careful should I be since I don't have it "yet"? Amy's gluten-free frozen foods are great, and I read every label at Trader Joe's, eat off the gluten-free menu, corn tortillas @ Mexican, no soy sauce or imitation crab @ sushi, steamed veggies @ Chinese, & gluten-free pasta @ Italian. Member Lisa wrote, "Even though you eat as gluten free as possible, you probably consume close to that amount of gluten due to cross contamination in processed gluten free food and other exposures. ...Eating 100% gluten free is a total improbability. "
      Most people with Celiac can handle 20ppm.  So is that equivalent to breathing in flour?  Having a half a teaspoon of soy sauce by accident in Asian food?  I can live without bread and cookies, but gluten is IN  so many things. Some on this site with Celiac have separate toasters, don't eat out, and don't walk into bakeries while there are others that eat out and eat fries made in shared oil at BK.  Even I haven't done that.  Isn't it dangerous? Thank you for you help!!
    • Pins And Needles
      You sure did nail it! I was too worried it was MS or Lupus or Celiac to be able to really give that option a chance. If anything my guess was low b12. The only obvious things in my diet are Vitamin water and protein bars. If you look at food it's in practically everything in pretty high doses. Going gluten-free uncovered this or made it start. MTHFR gene maybe? Magnesium too low? I haven't taken my multi & am looking up everything I'm eating. Still having the twitches but not near as much in my calves and feet. My arch pain is gone & energy is up a bit. Still twitching though and had some arm and shoulder pain overnight. I read it can be 6 months or longer for nerves to heal.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,706
    • Most Online
      1,763

    Newest Member
    between_spaces
    Joined