• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Lab Results - Disappointed A Little
0

7 posts in this topic

Hi, Everyone...

Just got my lab results today for the Celiac Panel and everything is pointing towards "negative" according to my doctor. However, she IS very "alternative" (she's a Naturopath) and has suggested we do the genetic tests next and that even if it's not "true celiac" that removing wheat is probably a good idea. She seems to be more of a "wheat" person than a "gluten" person as far as sensitivities she suspects...

Anyway, wanted to share my results and see what y'all think...

Tissue Transglutaminase AB, IGA: Value - 1, Normal - < 4

IGA: Value - 148, Normal - 81-463

Gliadin (Deamidated) AB (IGA): Value - 4, Normal - < 20

Gliadin (Deamidated) AB (IGG): Value - 4, Normal - < 20

Endomysial Antibody Scr (IGA): Negative

I've been disabled with chronic illness for 23 years now - diagnosed first as Chronic Fatigue Syndrome, then Multiple Chemical Sensitivities, lupus (has been positive then negative back and forth), Type II diabetes, hypothyroid, thyroid nodules, and chronic Lyme Disease. I've had a problem with generalized inflammation all this time. My immune system seems to be shot. I also have adrenal insufficiency, pancreatic insufficiency, and basically all my hormones are out of whack. No matter what I've done, I can't get my thyroid optimized. Have also been diagnosed with IBS and given Librax to calm the symptoms down when I get "colon spasms" (which consist of SEVERE abdominal pain attacks). Had GERD in the past and was given Zantac - but then learned that it's usually LOW acid instead of high so I switched to digestive enzymes and that seems to have cleared up the GERD (though I know it can still be silent). Starting about 2 years ago, my doctor found weird things in my blood work - low protein, low muscle mass (deteriorating), low calcium... I've also tested very low in iron, Vit. D, and magnesium. I take sublingual B12 so that level is usually fine.

My most recent symptoms that have developed are severe lower leg pain (feels like my bones are trying to press out of my legs) that disrupts even my sleep... Also shortness of breath, severe leg edema, swelling all over, total inability to lose weight (I'm 320 lbs.), and heart palpitations. I've been through all the cardiac testing - everything ok there. Oh - and my HAIR - is falling out SO badly!! I can clean my brush and brush my hair just one time and it's FULL of hair again... I'm 52 and going to be bald if this doesn't stop :(

My grandmother on my mother's side is from Lithuania - northern Europe(!) - I've read that celiac tends to be higher in people from northern Europe...

I guess the best "test" of all, though, is when I went 4 days gluten free last week (after my labs). The shortness of breath and heart palpitations did NOT occur. My chronic nasal congestion and post-nasal drip cleared up. I THINK I felt more awake (at least a little). My birthday party was on Sunday so I went ahead and ate "normal" - after a breakfast of cereal with gluten I had a BAD attack of the shortness of breath and heart palps... There is a definite correlation between what I eat and at least these 2 symptoms.

Does this sound like I've had a false negative test? I know the genetic tests will help a little to clear things up, but just curious what y'all think. Does this sound like a gluten intolerance, or just to do with wheat?

Thanks so much for any thoughts or clarifications of all this...

Jacki

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


mmmm... first off quit stressing over it. Stress does all sort of stupid things to a person's body.

Just 'cause the blood tests came out negative doesn't mean that you can't have celiac. Logically, the next step would be both the genetic and the endoscopy. I'd think getting an endo done would be a good idea anyway just to have them take a look in there.

0

Share this post


Link to post
Share on other sites

Pursue testing, but, when that is done, go ahead and seriously trial a gluten free diet, (and medications) to see how you respond. Testing is not 100% accurate, and gluten intolerance may not show up the way celiac disease does. Lyme disease can make one gluten intolerant and problems with thyroid and insulin resistance also go along with it. You may respond well to diet and become healthier, certainly it won't make things any worse.

0

Share this post


Link to post
Share on other sites

Sorry to hear about your troubles, I'm sure all of us on this forum can relate. It sounds to me that the main source of your illness is the Lymes disease, that's a killer for sure. I've had it for decades and my health has been a daily struggle to keep on keeping on. Going gluten-free has helped tremendously.

Doctor Oz just had a program on 12/03/12 about how bad ANY wheat product from the United States is for everyone, that no one should eat it. Turns out some people are more sensitive to the crap that American farmers are producing.

I wish you well.

0

Share this post


Link to post
Share on other sites

Hi Jacki--

This is actually very good news. The truth is gluten can cause very serious symptoms and health consequences even when it is "just" Non-Celiac Gluten Intolerance.

Remove ALL gluten for at least three months -- I generally insert (six is better here) -- in your case I think six months to a year may be essential. Nonspecific symptoms that are lumped into CFS or Fibromyalgia are often improved with gluten removal and possibly other dietary changes...it sucks....there is no other description. I can tell you your health can be improved...often dramatically if you stick with it and keep looking for answers in the foods you consume.

Hang in there...hang out here...learn as much as you can and then take each day as they come.

I promise you can feel better and even quite possibly -- one day you may feel great.

0

Share this post


Link to post
Share on other sites
Ads by Google:


...

I guess the best "test" of all, though, is when I went 4 days gluten free last week (after my labs). The shortness of breath and heart palpitations did NOT occur. My chronic nasal congestion and post-nasal drip cleared up. I THINK I felt more awake (at least a little). My birthday party was on Sunday so I went ahead and ate "normal" - after a breakfast of cereal with gluten I had a BAD attack of the shortness of breath and heart palps... There is a definite correlation between what I eat and at least these 2 symptoms.

..

Hi Jacki,

Sounds like a nicer-than-usual 4 days. Are you eating gluten today?

As far as whether the issue is gluten or maybe just wheat, I think that'd be something to look into AFTER a longer-term period of relief from at least the two symptoms affected in those 4 days.

Since ~30% of everybody has celiac genes, the info doesn't have much value imho unless looking for offspring's or other relatives' susceptibility.

Usually people in your position would look to an endoscopy next, looking for clues in the esophagus, stomach & small intestine & taking biopsies to examine for celiac. But I don't think a typical Naturopath has access to that. Any chance the ND can send you to a GI MD for that?

I'm a little disappointed that the ND would lean so much more to wheat than to gluten. I hope that's uncommon these days.

Celiac is often called The Great Imitator diagnostically. Your CFS, MCS, inflammation, insufficiencies etc etc (feel so bad for you dealing w/ SO much) could all be attributed to celiac.

If you're unable to get an endoscopy, I'd have to say why not try a strictly 100% gluten-free diet starting NOW? ;)

Hope you can get on a good path to health asap, Jacki.

0

Share this post


Link to post
Share on other sites

Hi, Everyone who so kindly responded...  I'm so sorry I haven't replied in so long - I think I just kinda zoned out.  Sometimes I just get SO tired of fighting all these illnesses, treatments, researching, different meds, etc., and I just burn out and want to "hide out" a while...

 

For an update...  After this negative test, I did have a saliva test for iGa and it was VERY low - so would that possibly mean that my immune system simply does not MAKE the antibodies to the gluten protein, therefore being a false negative?  Seems I read that somewhere on these forums but I can't seem to find it now.

 

We did do the genetic testing, and I did test positive for 1 of the 2 genetic markers.  I also had VERY high C-Reaction Protein - 27.3 - and she said that is showing I have some major inflammation going on somewhere.

 

After that first 4-day trial off gluten did so well, I did go gluten-free again back in Dec. and made it for 9 days that time.  Had the same results - 9 lbs. came off instantly during that time (after being STUCK at 330 "forever") - plus the other symptoms improved.  In Jan. we went on a cruise and I did NOT stay gluten-free.  I wish to goodness I HAD.  When we got back I did immediately go back to gluten-free, but for some weird reason THIS time I did NOT have any positive results.  Symptoms stayed the same, weight stayed the same (I'd regained 6 of the 9 I'd lost on the cruise) - and I got VERY discouraged to be giving up all my favorite foods with NO results whatsoever and just got fed up with the whole thing.

 

Over the next month or so I developed MAJOR joint pain in my fingers and now have a very painful tendonitis that is stopping me from even being able to make a fist - and it's weird because it hit BOTH hands at the exact same time.  Plus, the leg/ankle swelling will NOT go away no matter how many diuretics I take (is this gluten-related??).

 

So needless to say, I'm now back on board and taking it way more seriously this time around.  I just really wish (and hope) that I will see at least SOME of those positive results I got the first 2 times - that would really help encourage me to continue.  What would cause this reaction - to do so well those first 2 times and then "nothing" - ??  How long does it usually take to see some positive results after going gluten-free?  Seems many say just a few days and they feel better than in years!  I WANT that!!

 

Thanks so much for being there and for all the support...  Oh - my ND DOES work under a regular physician and can definitely order any testing we want to do.  I'm just not sure at this point whether it's necessary to go through the biopsy since it seems being gluten-free is necessary for me.  Or would the biopsy show anything else we might need to know?

 

Thanks again,

 

Jacki

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
      107,349
    • Total Posts
      935,639
  • Member Statistics

    • Total Members
      65,027
    • Most Online
      3,093

    Newest Member
    lcook9@my.wgu.edu
    Joined
  • Popular Now

  • Topics

  • Posts

    • Celiac disease is not diagnosed by symptoms alone. Why?  There are over 300 of them and many, if not all, overlap with other autoimmune issues or other illnesses.  Learn more about proper testing: http://www.cureceliacdisease.org/screening/ I am formally diagnosed.  My hubby is not.  His mis-informed doctors told him 16 years  ago to give up gluten.  It worked, but now we do not really know if he has celiac disease or not.  He will be the first to say that I get WAY more support from family, friends and medical.   I am sorry at your doctor gave you the wrong advice.  Now, you must decide if testing is worth pursuing.  I wish you well.  
    • I am considering having my brother - who inherited Daddy's power woodworking tools - plane down my cutting boards and sand the edges enough so I can keep them. The spoons and soup stirring things though will have to be decorative. Breaks my heart. I've had good luck with Merle Norman cosmetics. They have a listing of things that are gluten-free that has helped me. My local store owner was able to get the list and knows what I can use and what I can't.
    • While you could very well be vitamin/mineral deficient, you could also have issues with your thyroid.  Autoimmune thyroid is common with .......autoimmune celiac disease.  Your doctor should order a full thyroid panel, including thyroid antibodies.   Your blood sugar should also be checked (autoimmune diabetes).  I am not saying you have these issues, but these AI issues are common with celiac disease.  In fact, you can develop or have more than one AI issue.   If I feel a very strong need to nap, I know my thyroid is off and my doctor should be notified.  A simple blood test usually verifies that an adjustment to my thyroid replacement is needed.   That said, you are in the healing stages of celiac disease.   Eat healthy and include plenty of fats to keep you satiated.  Try to avoid processed foods.  Make sure that gluten-free diet is varied and full of veggies.  Get plenty of rest.  Just listen to your body.  Soon you will feel much better.  
    • Hi and welcome Can you tell us a little about your diet? What are you eating on a typical day? You may find that some simple switches in food choices can deliver more energy and fewer spikes and crashes. This is something that receives too little attention, particularly from the medical community. It can come as a huge shock to the system and as the implications become apparent its easy to feel overwhelmed. This certainly happened to me and many others here so first do know that you're not alone. You are currently grieving believe it or not and you will be going through the stages of grief.  Second, although it may not feel it now, it WILL get better and you will adjust and adapt as you get used to the diet and start focusing on what you can still do rather than what you can't.  In the meantime, this is a good place to vent and share those feelings as they are perfectly natural and understandable and whilst not always helpful,  they are a part of you and a part of the healing process. Go easy on yourself, this is very early days. You are young, which is good news, it means you will heal sooner and you will adapt quicker and there's lots of good things on the way for you as your body gets a rest from the gluten that's been holding you back.  All the best! Matt
    • Hope it proves of use  The Umberto Volta interview is particularly interesting and the case study from England also...
  • Upcoming Events