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Member Since 04 Feb 2013
Offline Last Active Oct 05 2013 06:36 PM

Posts I've Made

In Topic: What Else Would Cause The Dgp Iga ?

08 July 2013 - 11:25 AM

 What was your score on that DGP IgA Test?  I scored a 20 on by DGP IgA with nothing else positive, 6 months later I decided to do the blood test again with a different GI and it was a 16, all other ttGs and the IgG were similar or lower than the first test, the DGP IgG which was 12 the first time was 6.  The 2nd GI I saw was more specialized in celiac and said that DGP IgAs are strongly correlated because most of the time people test off the charts on them, usually over 30 which is the strong positive threshold, you're not going to get that kind of score with anything but celiac.  He said though that people who do test down closer to the threshold of 20 WITHOUT any other positive celiac test often times do not have celiac.  What DO they have is the question, most are often left with IBS diagnosis, so could a percentage of IBS patients have positive DGP IgAs?  Given we know there are many non-celiac IBS patients with gluten sensitivity I guess its possible.  I also exhibited some improvement in gastro symptoms when I went gluten free for 10 days or so back in March and also had nothing else off on regular blood tests such as potassium, iron or calcium levels.

In Topic: Celiac Vaccine? Not For Me

15 June 2013 - 04:25 PM

I anticipate initially this vaccine is going to create problems because people are going to think its the equivalent of lactose intolerants take that completely allows the body to break down lactose and will go completely off their gluten-free diets.  From what I'm reading or understand this is just a 1st step in that it basically prevents cross contamination concerns or maybe if you ate one breadstick or a few croutons you would not have any SI reaction.  I'm of the opinion a "complete cure" or medication that allows gluten to be completely broken down is easily feasible and probably has been for quite some time but since celiac has only recently come to the forefront no efforts were being put forth to get there.  I think if this is ultimately successful that will follow quickly behind.  I most likely have celiac although its hard to say because my GI symptoms can vanish for weeks at a time and I had one marginally positive blood test but I more or less decided 3-4 months back when I got the blood test result I was not going to even bother going gluten-free until some sort of cross contaminant preventer became available.  My only positive test was a 19 on the IgA, I figure in 3-4 years (the most likely time before this thing is out there) I could not do that much additional damage given the ttA and EMA were raging negative. 

In Topic: How Much Does The Diet Really Help?

06 March 2013 - 12:50 AM

That's a good question !  Because I've seen it elsewhere.


The part that I bolded, in the first quote, the (questionable) claim that only 50% of celiacs heal, can be found on this site, the University of Chicago Celiac Disease Center, FAQ page "Why do I need a cure when I can simply eat a gluten free diet."  



I've tried to find what % of knowing celiacs follow the diet.  The only stat I could find was one site that stated anywhetre from 50-70%, not sure if anyone else here as seen numbers on that.


I my opinion.  If you are going to have an AI disease Celiac is the one to have because the fix is gluten free diet.  It is a pain to go out to eat, or go to a party, to me this is the most difficult part of Celiac.  For help there is an App called "Is that Gluten Free?"  I bought the grocery store version and they have information on hundreds of products.


Trust me this lifesyle is not easy, but I'd rather see the positive rather than the negative.  I do have my pity parties but life could be much worse.


When I first got the diagnosis I certainly said some dumb stuff and said I'd rather have a few other conditions than this.  I know people with Crohn's and UC and its a wide range of impact on life, some are suffering way worse than any celiac and others much less, they may be at a much greater risk of other conditions developing which they have zero control over unlike someone with celiac who controls their own destiny to a big extent but their quality of life with a mild case of Crohn's or UC may be impacted less.  I think the biggest fix can be if they can manage to get a drug out there allowing for a reasonable degree of CC, if we can at least get something where the pizza guy can make your pie on the same surface he just made the regular pie on it would probably be the best day of some people's lives on this forum.  I know I'd take modest side effects if it meant I could order off any gluten-free menu and not worry what utensils may have touched the food.  If I get a biopsy confirmation this is indeed celiac I know there are going to be plenty of days down the road it takes every ounce of will I have left in me not to cheat, particularly when I'm traveling which I unfortunately do alot. 

In Topic: Is There Any Way I Got A False Positive?

25 February 2013 - 07:05 PM

Hey all.


I guess I got diagnosed with Celiac disease on Friday. I've been unwell for several months, and I went in for some blood tests, but my doctor didn't tell me what all she was testing me for, and then she called on Friday to say that everything came back normal except that it "clearly shows [I] have Celiac disease". She didn't give me anymore information than that, like any test numbers, or even what tests were performed. She did tell me to start a gluten-free diet immediatly and she referred me to a dietitian.


Now, I talked to a Celiac friend of mine who said his friend got a positive test, but the endoscopy or biopsy or something came back negative. But I read that I need to keep eating gluten for that test, and my doctor told me to cut it out, and didn't mention it.


So basically, I'm thinking my doctor was 100% sure it is Celiac, and that's just really scary at this point to me. Is there any chance it's not, or is there any way for me to guarentee it at this point? Or do I just accept it as 100% and move on?


To answer the endoscopy quesiton, it can often be "negative" in people with positive blood results because a large majority of gastroentorologists do NOT take enough samples, there have been studies showing most are surprisingly unaware how many samples they really need to be taking.  In someone who may have only had celiac for 2 or 3 years its entirely possible a biopsy with only 3 or 4 samples all from a narrow region of the small bowel may come back negaitve.  Remember, sometimes celiac panel bloodwork can be negative for a few years after the disease technicallly onsets, its as likely or even more likely large sections of the small bowel can remain normal that long as well.  Based on what your doc said that everything was normal but it clearly shows celiac its entirely possible that if she ran the recommended celiac panel everything was on the "high end" of normal.  In general most healthy people test strongly negative on all celiac panel tests, that means IgA and IgG numbers well into the single numbers, sometimes even between 1 and 3 (20 or higher is positive at most labs) and TtG numbers around 0 or 1, alot of gastro doctors become concerned when they start seeing numbers creep over 10 on either Iga/IgG test that you're at least dealing with a gluten sensitivity. 

In Topic: Night Sweats?

11 February 2013 - 07:36 PM

Oh my gosh. I'm just being tested for celiac disease, but I've been complaining of night sweats and hot/cold intolerance (can't regulate body so entire temperature setting is comfortable) for years. I feel warm so I turn on a fan, then I get cool so bundle in a blanket, then I get warm so I turn the fan of, and on, and on, and on, etc.

Just as I started typing, my hands started itching and swelling again. I've been eating potato chips with a friend, but they say "Gluten Free." ??

I've always had "streaky" night sweats where I can go months at a time sometimes even a year or two with no problem and then I repeteadly wake up sweating most nights in a span of a week or two, never could really connect it to anything but remarkably when its happening it can do so even with brief sleep periods, I've gone to bed at 2am and woke up sweating at 3 or sometimes can even take a brief nap during the day and have it occur.

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