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Lab Results - Disappointed A Little

jackibar

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jackibar Rookie
jackibar
Posted

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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shadowicewolf Proficient
shadowicewolf
Posted

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.

Takala Enthusiast
Takala
Posted

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.

katecamp Newbie
katecamp
Posted

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.

GottaSki Mentor
GottaSki
Posted

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.

tom Contributor
tom
Posted

...

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.

  • 3 months later...
jackibar Rookie
jackibar
Posted
  • Author

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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    • trents
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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