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I Am Totally Confused Now!
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I posted here before a few weeks ago about a blood test and symptoms. I have had diarrhea almost daily (and several times at that) since the birth of my 2nd and last child in 2000. It started immediately after her birth. I also had a tubal done at the same time. I suffered from diarrhea usually instantly after eating, but sometimes for no reason (maybe just a sip of water). Exactly one year later I had emergency gall bladder sugery (several stones and 3 attacks in one week). Then I really had a problem. No more travel. It was an adventure just to get to the store and back. I had to starve for a minimum of 2 hours if I planned to go anywhere and no eating until I had returned. The cramps were unbelievable. I also suffered migraines during this time (no previous history with them). I also had several other things going that would suggest celiac. Finally in May, my GP ordered a celiac test. It came back weak positive. I came here and researched this thing to death and was sure I had my answer. I wrote down all the recommended tests and took them to him and requested they be done. He was more than glad to help. Everything on there came back negative (and I mean a LOW negative), except the IgA-it showed a weak positive of 23. I decided to do some more reading and researching before committing to the GFD (already had a colonscopy once and not eager for the endo). I forgot to mention that in the last 4 years I have eaten anything I wanted and never gained a lb. Actually due to 3 different flare-ups that cost me 2-3 lbs each time, I had lost almost 10 lbs. I had never gained a lb. Once lost, it would stay off-due to the constant diarrhea I'm sure. However, in the last 2-3 weeks, the symptoms have lessened and gotten farther apart. Now, I am almost 1 week totally symptom free. No headaches, no diarrhea, and I've gained 4 lbs! There are no cramps, no reactions, no nothing. What in the world is going on? If this is celiac, does someone who shows 'classic' symptoms from the beginning of onset of the disease for 4 years suddenly become a 'silent' celiac? And if it isn't celiac what is it? And why are my IgA levels showing a weak positive? I am at a loss here. I have never heard of celiac symptoms just disappearing after years. Can anyone help me out here? Any suggestions would be more than welcolmed!

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Truly the endoscopy was A LOT (at least for me) easier than the colonoscopy... there wasn't much prep and you really don't remember much from the procedure. I know it's difficult when you don't have an answer to why you're symptomatic, but just keep asking your doctor. It's better to rule it in/out than to wonder and possibly endanger yourself.

For me, the most celiac-positive-related antibodies I tested negative for, but like you I have at least one showing up in my blood. My IGA was 23 (like you), but my IGG was positive. Still with those two, it's still inconclusive, since my endo & colonscopy biopsies were normal. If I were in your shoes, I'd get the endo. I don't believe that antibodies show up for no reason, but I'm not a doctor.

Good luck!

Gretchen

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I don't have answers for you but if I were you I would go to enterolabs.com and do their stool test. It's fairly reliable and you would know for sure. I know how frustrating it is to not know.

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I thought I needed to correct something I said in my original post. My IgA was NOT positive. It was negative (8), it was my IgG that had a weak positive (23). I know this might change things. I am almost sure several other things could cause a positive on the IgG. Thanks!

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KC, that's all I had for a year or so, then the IGA showed up. Yes, there are other conditions that can cause the IGG elevation, but the important thing is to not be disuaded to pursue an answer.... you are obviously experiencing symtoms and need an answer to that.

My next step is some more tests, my wedding (at which I've already bought a very expensive and probably toxic cake), and then I'm going gluten free! :D Best test for inconclusive blood tests would be "the diet"!

Good luck!

Gretchen

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Thank you so much for the reply. The only problem I would have doing the gluten free diet is that I have been TOTALLY symptom free for 3 weeks now! I keep waiting for something to happen, but it doesn't. I have changed nothing in my diet whatsoever (which accounts for the gained lbs!). I am taking no medication, doing nothing different at all. I used to have daily headaches, dry mouth, daily diarrhea (multiple times), and had lost 10 lbs in 4 yrs. Now I have nothing. The headaches, dry mouth, diarrhea-it's all gone. No cramps, no rumbles, nothing. That is why I am so confused. If I have celiac, how can the symptoms just disappear? With no diet change or no medication? I can't find anything on the

internet that comes even remotely close to explaining this. Anyone with a theory?

I should also mention that in 4 years time, I have never had more than 1 day without an 'episode'.

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I don't know... I'm sure some here could explain your lack of symptoms in relation to celiac... I guess it all depends on what you eat, how much of it and how sensitive you are. I'm curious though, has your doctor ruled out IBD (inflamatory bowel disease).. .ie: Crohn's, etc? Those with IBD experience flare-ups and can go for time with / without symptoms. I've read that IGG's are frequently elevated in relation to IBD's. Just thought I'd mention that.

Gretchen

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Wow, thanks for that info! I have been searching for anything I could think of on the net that associated IgG and non-celiac disease. I had a colonoscopy about 1 yr into this and it showed nothing, so my GI said 'IBS'. I will definitely research IBD and see if maybe that could be a possibility. Thank you so much! :)

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There must be 1/2 dozen or more tests that are needed to fully explore the intestinal tract.... anything from x-rays to scopes to cameras. Crohn's is usually in the small intestines and ulcerative colitis is in the large. To explore the small intestine where Crohn's usually is you'd probably need a small bowel x-ray (you drink some chalky substance called barium and then they x-ray you)... a colonoscopy won't reach. I've still got to get this ruled out myself... maybe in a month or so.

Good luck to you and you're welcome.. I could only hope to be as helpful as so many are here.. I'm just sharing what I've learned :)

Gretchen

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    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
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