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.

New With Questions
0

7 posts in this topic

Hi, I am a 41 year old male. I don't have the strong stomach or digestive symptoms that you hear about with Celiac disease however have many problems with leg cramping, pretty significant twitching of muscles while body is at rest, shaky hands, finger nail problems with raised bumps and white areas on a few fingers, cloudy head, trouble concentrating, bradycardia, very dry flaky skin on both sides of my nose. I have also had test in June cause I was feeling very tired and dizzy when I got up from laying down or sitting. They found then that I had normocytic anemic and also had elevated Prolactin (42.7) Anyway I had a tissue transglutaminase iga test done a couple of weeks ago and my results are as follows....

TIS TRANSGLUT AB,Iga My Value: >100 U/ml

Reference range: <4.0 (Negative)

(Note)

Interpretation: Positive (>10.0)

TIS TRANSGLUT AB,IgG My Value: 1.6 U/ml

Reference range: <6.0 (Negative)

Also Ferritin Test Results...

My result 20 ng/ml Range: 20-300 ng/ml

Vitamin B12 Test Results...

My result 396 Range: > 200

Vitamin D Test Results...

25-HYDROXY D2 My result < 4.0

25-HYDROXY D3 My result 26

25-HYDROXY D TOTAL My result 26

Thyroid Test are negative

MRI test was negative for tumor that would cause the elevated Prolactin.

I have had a Colonoscopy that was done in June that showed nothing at all.

I had the Endoscopy done last Monday after which the Dr. that did the scope said that he did not see anything that would indicate Celiac disease and that maybe I am just sensitive to gluten. I have not received the results of the biopsies yet.

My questions are from what I have heard that a TTG test >100 is a pretty high value and I am wondering if the Dr should have seen anything during the endoscopy.

Also I have read that TTG can have false Positives for other Autoimmune Diseases and wondering if it is not Celiac if it could be something else with my TTG levels so high... or is the TTG so specific for Celiac that I have it and they did not find it or I am just sensitive to glutten. Or can you not have much damage to your intestine but have the neurological symptoms.

Thanks for any info or personal experiences you can provide.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Looks as though you may be suffering from a few nutritional deficiencies. A good start is to take Country Life Natural Vitamin D (it also contains Vitamin A, which I believe some of your symptoms indicate that you may be in low in) as well as medium-chain triglycerides, which will help your body absorb them. Also, you may wish to supplement with chelated manganese for your muscles. If your muscle issues don't resolve, please let me know, because I have a suggestion that involves parent essential oils (Omega 3s and 6s) that works great....but I thought you might wish to try these other, easier things first.

0

Share this post


Link to post
Share on other sites

Damage to the gut is pretty severe if it can be seen with the naked eye. Wait for your biopsy results to come back and see what the pathologist has to say and then if necessary we can start speculating on your tTG. :)

0

Share this post


Link to post
Share on other sites

You do have a very positive ttg IgA test. That is most likely an indicator of celiac but it could also be from diabetes, thyroid disease or even autoimmune liver problems, although it is less likely. There a few other blood tests that can be done:

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • EMA (anti-endomysial antibodies)-IgA

EMA IgA is considered to be the most specific to celiac.

If your biopsy and other blood tests come up negative for celiac disease, you might want to look into thyroid testing (free T4, free T3, TSH, and TPO Ab) because many of your symptoms are those of hypothyroidism... Actually even if your celiac panel is positive you might want to get it checked since many celiacs have thyroid problems, a routine check is how I discovered my hashimotos (hypothyroidism), and I had MANY of the same symptoms as you.

After your testing is done, regardless of the outcomes, I think you should go on the gluten-free diet for at least a few months since ttg IGA can (and often does) indicate celiac disease. It can't hurt.

Best wishes to you. I hope you feel better soon.

0

Share this post


Link to post
Share on other sites

Thanks everyone. I just got my results and biopsy supported blood work and I have Celiac.

0

Share this post


Link to post
Share on other sites




(hugs) I'm glad you know for sure and hope you have a fast recovery.

0

Share this post


Link to post
Share on other sites

Hi Breiec,

Welcome to the forum! :) The good news is you now know why you have been sick. So you can start on the gluten-free diet and begin getting better. Don't be upset if it takes a few months to get past some of the symptoms. Actually it can take a year or more to recover. But everyone has their own body and timelines vary a lot.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What's for dinner tonight chat?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

http://www.celiac.co...e-free-recipes/

Super Easy Meal Ideas Anyone?

http://www.celiac.co...l-ideas-anyone/

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
      103,418
    • Total Posts
      917,668
  • Topics

  • Posts

    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
    • Gluten and panic attacks
      Now if everyone out there who probably has a gluten problem adopted your attitude, they would be having a much better life.  After over 10 years gluten-free myself, who really cares about gluten pizza? I go months without gluten free pizza, which is very good by the way, and I am not an emotional wreck.  Imagine!  Glad you feel better and yes, it was the wheat!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,550
    • Most Online
      1,763

    Newest Member
    Tam Tam
    Joined