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Member Since 15 Sep 2012
Offline Last Active Mar 20 2013 10:21 AM

Posts I've Made

In Topic: Negative Biospy! So Confused Please Help

19 March 2013 - 11:46 AM

There is a long list of problems indicated by a positive ttg IgA but remember that the ttg IgA is up to 95% specific to celiac - meaning if 100 people have a positive ttg IgA, 95 of them will be celiacs. I have seen (somewhere) that the specificity of ttg to celiac is as low as 75% but i can't find that info again...The following link discuses the ttg test:


I agree that it is more specific to Celiac than any other disease but there is a point to looking at it by a patient by patient basis. Theoretically 95 out of 100 patients with elevated TTG have Celiac but the University of Chicago used these theories to also swing the ball the other way:

"tTG are thought to be 97-98% specific, but by definition this means that 3 in 100 persons who don’t have celiac disease will have elevated tTG (biological variations, nothing more). If you consider that celiacs are 1% of the general population, it follows that out of 100 persons tested for tTG: 1 has celiac disease and 3 do not. This could mean that only 1 out of 4 of those with positive antibodies will have celiac disease as the cause." - http://www.curecelia...luten-free-diet

The study you read with 75 percent specificity may have come from me, I had an article on hospitalized patients with life threatening infections/conditions not related to Celiac and although they did end up finding some undiagnosed Celiac they also saw high elevations during hospital stay. These antibodies also respond to inflammation, I recall talking to a surgeon at a dinner gathering once and he brought up how they use  some specific autoantibodies to help them know how the surgery went. For example, people undergoing intestinal removal and receiving ostomy bags have a high rate of elevated TTG.

In Topic: Negative Biospy! So Confused Please Help

19 March 2013 - 07:08 AM

On the reverse side, if you test negative to all of the other possibilities outside of celiac, than its likely that you do have it.

Yeah but there is a long list of things to investigate before claiming someone is "just in denial". It looks to me like the original poster probably has Celiac but I find Takala constantly makes posts that are so ignorant and inflammatory so I was going after that. To just group everyone who has looked at a wide spectrum of issues WITH their doctors and ruled at Celiac as just in denial would be no different than if someone said everyone on this forum is just extremely bitter that they have Celiac so they want to believe everyone else to have it to feel less alone and isolated, simply just to comfort themselves. We are just in denial about how rare the disease is. Do you see how that comes across?

In Topic: Negative Biospy! So Confused Please Help

18 March 2013 - 09:28 PM

People with inconclusive test results post here frequently, who go off of gluten, then realize what a commitment it is, still don't feel "good" because they have to clean up other food/health issues and aren't sure what to do, then they come back and make up excuses as to why they should resume eating gluten again for a retest, then the retest comes out negative, then they try to convince themselves they don't really have a gluten problem.   But they do.  Gluten can be very addictive, and the resulting "leaky gut" with celiac can cause havoc with all these other types of food, giving you (temporary) intolerances.

What? So people have inconclusive tests and follow up tests come back negative while their not so related to Celiac symptoms DO NOT improve on a gluten free diet and you think that it means they are just in denial about having Celiac? This, as many of your posts do, shows how little you know about the blood tests or OTHER diseases/issues that go on in the intestinal tract. So if someone has a positive TTG, negative biopsy, no improvement on a gluten free diet, return to gluten with no symptoms and have follow up tests while eating gluten for several weeks which come back negative they have Celiac? Did you really type that out, look at it, and thought it made sense? In the case you just described there are SEVERAL diseases that can elevate a blood test, so instead of looking at other things like Crohn's, autoimmune liver the person should just fixate on a single blood test and disregard that they do not improve on a gluten free diet while ignoring a more logical cause that could do them harm if not treated? Yeah, that makes a lot of sense. 

Sounds like your "Doctors say anything over 10 on blood test is early diagnosis of Celiac." Kristin, please ignore Takala, he/she likes to just make ridiculous blanket statements, really makes it sound like everyone has Celiac.

What researchers are now starting to notice as the TTG tests have been around on the market longer and more research/clinical trials have been completed is that it is not as specific to Celiac as once thought. That being said you COULD still have Celiac that was missed, especially if you noticed symptom improvement that quickly. There is a long list of intestinal issues that can elevate the blood tests including infections. It is hard to say in your case since you went off gluten and only ate a bit prior to the endoscopy, the damage could have been so minimal that it was missed but it is important to know what is going on in your body not to miss anything that can cause complications if left ignored.

The list of TTG elevations includes (but is not limited to):
Thyroid autoimmune, both hashimoto's and Graves
Autoimmune liver
Type 1 diabetes
Infections - Surprisingly both intestinal and no intestinal - http://www.ncbi.nlm....les/PMC2810390/
Chronic liver cirrhosis - http://www.ncbi.nlm....ubmed/15936306 
Congestive heart failure - http://consults.blog...celiac-disease/
Ulcerative Colitis
A few other intestinal issues that I can't recall right now
Pretty much any other autoimmune disease

I linked a few articles to give you a better understanding, I have quite a few more if you need more info on a specific cause. The causes of most elevations would be pretty obvious like infections and their sudden onset of symptoms, congestive heart failure, type 1 diabetes. Some however are not so obvious and that is why anyone with any understanding of blood tests will tell you that the TTG IgA is not solely specific to Celiac. It is important to also have the titre, in high tires other causes are less likely where as mild elevations need to be looked at further. It is unfortunate that your doctor told you to go gluten free before getting more tests in as now you are left wondering. Hopefully you find your answer soon and if going gluten free makes you feel better than do it, who is to tell you otherwise?

In Topic: What Is Wrong With Me

17 March 2013 - 02:31 PM

Ok, well Lupus at 48 is rather uncommon. Even if you did have Lupus, why would you end your life? Would you really want to succumb to this? You have to be stronger than that! My grandfathers brother had Lupus, guess what age he lived to? 92, no I am not kidding you NINETY-TWO. My grandfather who was perfectly healthy lived until 88. Lupus is known to often go into long periods of remission in which some people can even reach nearly a decade of symptom resolution. Would you rather not have it? Of course, everyone on this forum would like to be able to eat gluten without it destroying their intestines but you learn to cope and you become stronger because of it.

You sound like you are in awful shape right now, so it can only get better from here. If you get diagnosed with lupus, well guess what? You get treatment, and it will help push it into remission. At this point, it is only upwards for symptoms so don't give up and don't even think about ending your life because of it! There are a lot of people here that have multiple autoimmune diseases, they are all doing fine. 

Go look through my old threads about my panic about Celiac when I was first faced with it's probable reality, I look back on those posts and laugh now. I also had a childhood friend that was diagnosed with Lupus very early and he is as healthy as anyone else, in fact at this point I would say he is in much better shape than me and most of my friends. The anxiety and depression that come with being newly diagnosed are temporary, you are in a TEMPORARY state of mind right now so it is very important to not act out in any harsh way because of it. 

In Topic: What Is Wrong With Me

17 March 2013 - 07:30 AM

Robb, I am really sorry to hear how poorly you feel, hopefully you can get to the bottom of it soon.

The thing with the gluten free diet is that it does not require a prescription.... You are free to do it on your own, so why not give it a try? Desperate times call for desperate measures and you can very well have NCGI. That being said I think it is important to not put too much weight into gluten intolerance as there are many other things that need to be evaluated. 

For your free levels of thyroid, your T4 feeds your T3 basically and your T3 is what your body uses. So the lack of proper binding of T3 from T4 is usually what will cause the symptoms. Now the thing is that they are just beginning to discover that having elevated thyroid antibodies (Thyroid peroxidase, Thyroglobulin) will also cause the symptoms. You have to remember, when an autoimmune disease begins it is not just one big attack and then the organ/gland is left completely useless, it takes time. So for all we know, without having the antibodies tested, is that you are in fact in the beginning stages of Hashimoto's.

Another red flag for me is that even though your thyroid levels are in the "normal" range they are getting pretty close to the bottom of the range, especially the T3. For those reasons I would recommend insisting on the antibody tests that I just listed. There is a poster on this forum that got a diagnosis when her blood tests were positive and if I recall correctly her thyroid hormones were still normal but in the very low normal. Her username is nvsmom, you should contact her to get some info as from what I read she has responded well to treatment. Ideally, you want your T4 to be around 50 percent of the range while your T3 is the upper 66-80 percent. Most patients feel best at these levels.

Also, have you had the ANA and other associated antibodies looked at? Your symptoms also ring the lupus bell to me.

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