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Lab Results - Disappointed A Little
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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

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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.

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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.

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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.

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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.

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...

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.

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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

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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