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No Celiac
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Well, my diagnosis is no Celiac Sprue from my endocscopy.

My results are in. No Celiac, and no h.pylori, thank god!

He did say that because I've been gluten-free it could effect results, BUT he said he saw none of the typical signs of sprue. I asked him what those were and he said there were certain "histological" signs, whatever that is, and he said I had none.

He also didn't think I had it just from looking at my bloodwork.

So, the diagnosis is no Celiac.

That is good for getting health insurance:)

I have no intention of eating gluten again, but I won't panic so much when I eat out now.

He says I have reflux but no damage. I am taking Nexium for this.

He also says I have IBS ( I knew this of course) with lactose intolerance. I'm not sure how he "knows" this but it's what he suspects at least.

Not a problem since I've been eating well and rarely eat dairy.

But I need a sour cream and cream cheese subsitute for sure!

Are they any lactose intolerant people who can handle cheese?

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Well, how do you feel about these results? Are you concerned that questions might not be answered in regards to your overall health? Are you relieved? Do you have some concern that the results are wrong? Or do you feel that the results make sense for other reasons?

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Well if you have been gluten free of course the endoscopy would show negative. The damage would heal, you would get an endoscopy, it would show negative, and he would say you don't have celiac...that then may not be true.

Which blood tests did you have done originally and what were the results?

If it's not this then what is it? There is obviously something going on.

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That has to be a little disappointing. I have been diagnosed with IBS, and I guess since we still know so little about it, it still kinda seems like a bogus diagnosis. If you have predominant const., try Zelnorm. It does help some. I have heard that Zoloft really does help with the spasms too and is not diagnosed just because some doc thinks it's all in your head. :P A good resource with an active forum like this is Heather's IBS page. If you google it, it will come up on top. I would stay gluten free, but also stick to soluble fiber and not insoluble - there is a big difference with IBS. She also has an article about which types of fiber supplements are good and which contain chemicals that might cause spasms. (Like Benefiber powder vs. the chews - they are different). Best of luck towards feeling better - did they say yea or nea yet on the thyroid trouble? I remember your stuff sounding very much like thyroid...

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My blood test results were:

Antigliadin ABs IgA 8

Antigliadin Abs IgG 47

Transglutaminase IgA 4

Dr. told me just from looking at this before endoscopy he did not think I had celiac disease.

He said the most important test, the one they really look at is the bottom one, the Transglutaminase. He said it used to be they looked at all of them but in the past few years they have realized the bottom test is the most important in identifying celiac disease.

It says in the report of the 3 tests:

Test 1: Reticulin IgA antibodies are specific for celiac disease and occur in 60% of patients with active disease.

Test 2: IgG antibodies are NOT specific for celiac disease and occur in 20% of patients with active disease. This is the only one I tested high in.

Test 3: Tissue transglutaminase has been identifed as they endomysial antigen. Studies have demonstrated that endomysial IGA antibodies have over 99% specificity for gluten sensitive enteropathy.

According to this I only have a 20% chance of having celiac disease. (of course I could still be gluten intolerant)

Because of this and the fact that he saw no histological signs or biopsy problems he says I don't have celiac disease.

I'm not going back to gluten, or anything like that. I will just be a teensy bit less worried when I eat out that there was a cross contamination issue.

They tested my thyroid and that is not the problem. It came out OK..so it is still a mystery! BTW, I can't use Zelnorm b/c my main problem with IBS isn't constipation...it's the other side, if you know what I mean! LOL

He did give me a brand new IBS drug called Nu-lev or something like that. He says his wife has IBS and swears by it. When you get pain you pop a pill that dissolves under your tongue. He says it literally abates the attack.

I'm going to try it as soon as my tummy acts up again!

He also says I have "reflux without damage" which he says is obviously better than its counterpart, reflux with damage. I am taking Nexium and it has really been helping.

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Hi Matilda,

I don't know what to think at this point. My dr. thinks I do not have celiac disease because of my bloodwork and endo. I never had an endoscopy before this one. If I had had a positive endoscopy earlier, of course I would believe I have celiac disease! I would not have even bothered with further testing.

My other GI dr. also did not believe I had celiac disease but he never did the endo so he couldn't say with certainty.

I didn't really say I was going to relax about gluten, I just said when I eat out I won't have as much anxiety; I won't worry about it as much. Usually I freak out when I'm in a restaurant b/c I'm sure they're going to gluten me.

To me it looks like I have about a 20% chance of having celiac disease. That is not very high. It's not to say I don't believe I have it, that is just not very high.

I'm not eating gluten either way so it's not like I'm in denial or something.

I also heard candida can make it look like you have celiac disease and I know for certain I have candida issues. Perhaps that is why my blood work came back as it did...

Don't know...but I am staying gluten free for sure.

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How long have you been following the gluten-free diet? I know I became lactose intolerant shortly before I got my actual diagnosis of celiac disease, but after a few months on the gluten-free diet, I was able to eat dairy again with no problem...perhaps this could be true in your case even if you are only gluten intolerant or something like that?

Laurie

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I've been gluten-free for 6 months.

My dr. thinks I'm lactose intolerant. He says this b/c he says that IBS and lactose intolerant are almost always seen together, and I have IBS.

I've already cut down on dairy but now I'll probably go even less or none.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • 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!!!!!!!!!!!!!!!!!!
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