jackibar

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

Hi, everyone...!

Just getting started here and am finding many of my usual sandwich products are gluten-free - but what is out there we can put them on (or between) instead of bread?! I'm assuming the corn tortillas would be ok, but are there other options?

Thanks so much!

Jacki

I'm just starting a gluten-free diet and realized I need to find a good substitute for the pretzels I use when I get hit with nausea. This usually only happens in the mornings after I take my meds that have to be on an empty stomach - I get hit with a wave of nausea and if I don't eat a few pretzels and sip some Coke or Sprite, I will throw up.

I think it's the blandness and saltiness of the pretzels that helps. What would a good substitute be?

Hi, everyone...

I just found your forums (and site) today when doing a search on "shortness of breath after eating" to see what came up.  Brief summary of my situation...  I'm now 52 years old and have been sick to the point of being disabled since Nov. 1989.  My first symptoms were dizziness and severe fatigue and weakness.  It got so bad that for 6 years I had to use a special high-back wheelchair just to go anywhere because I was too dizzy and too weak to walk or even hold my head up (had "jelly legs).  Was diagnosed in 1991 with Chronic Fatigue Syndrome.  After that, over the years, was diagnosed with lupus, fibromyalgia, environmental illness (Multiple Chemical Sensitivity), and Type II diabetes.  In 1996 we started avoiding chemicals like perfumes and cleaning products and my dizziness and weakness improved to the point I was able to forego the wheelchair.  Still exhausted most of the time, though.

Also have had a weight problem since age 7 which has now turned into morbid obesity (325 lbs., 5'4").  No matter what I do, my weight won't drop.  Thyroid tests come back normal, but my thyroid is NOT optimized (I'm on meds) - still have all the hypo symptoms - major hair loss, dry skin, fatigue, weight gain, fluid retention...  Finally in 2010 I went to a Lyme Specialist and using the right tests and the right labs (there are only a few in the country) I tested positive - had tested negative many times before.  So I've been undergoing Lyme treatment - but with only minimal improvement.

Earlier this year I started having really bad fluid retention in my legs, shortness of breath, and chest pains.  Went through every cardiac test but all was normal.  Have been on lasix to keep the fluid down.  But a few weeks ago, it seemed the lasix quit working.  Swelling in my legs, joint pain, severe tendonitis in both knees and hands, shortness of breath, and dizziness all got worse.  Had an EKG which was fine.  I started noticing my "episodes" of rapid heart rate (heart pounding and racing) and shortness of breath seem to happen after meals - usually in the evenings, but not always.  This got me to wondering today whether it could be food allergy related (or sensitivity).  Which led me to your forums.

I've been just barely skimming the posts but it sure seems this might be what I'm dealing with.  My Lyme doctor did suggest I look into going gluten free a while back, but I hadn't done so yet.  Just feel SO bad all the time - can barely function, feel "half-dead"...  But if there's a chance that this is the REAL culprit - and that I really COULD feel better - ???!!! - then I need to find out!  I have been tested for celiac over the years by a couple of my doctors (one is a Naturopath) - but it always came back negative.  Also had endoscopies for stomach pain attacks which I thought might be gall bladder but it just showed "gastritis" and a hiatal hernia.  So I'm thinking that if I AM having problems with gluten, it is probably an intolerance rather than true celiac - ?

Anyway, I'm really thinking I need to see what happens if I go gluten-free.  If this is my problem, how long would it usually take to notice a difference in how I feel?  Would a week be enough to tell anything?  I'm thinking of trying to make a big pot of vegetable soup or something that's simple but that I like and that wouldn't have gluten.  And maybe during the week supplement this with baked potatoes/broccoli while I'm learning how to really do this...  Would this work ok?

Does this sound like it might be my problem?!  Are there any good, basic books y'all would recommend for someone like me to learn more about this and the best way to get started?  Thanks so much for any help or thoughts...  I'm terrified - but sorta feeling excited like maybe there IS a chance I will get my life back after all.  I'd about given up hope.

- Jacki