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Coping With Mis-diagnosis
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I'm writing this because perhaps there is someone else who's hearing the same thing about those with a prior diagnosis that's being reversed.

I have a co-worker, with whom I happened to share the gluten-intolerance issue with who mentions to me that his mother was diagnosed with this about 15 years ago. (here I am thinking, wow...) Then for some strange reason a doctor tells her that she has never had this problem, she should never have gone gluten-free. So, guess what? She's now off the diet after all of those years. ok... :blink:

Then, my grandmother mentions that one of her friends had the same thing.. years and years on the diet, only for a doctor to reverse the diagnosis. She is now also off the gluten-free diet. ok... :blink:

Shame on me for not asking what the issue "really" was, but I didn't think about it until later. Here I am talking with my family and friends about the change in my life and I'm hearing all of this refuted information... that's why I put this in the "Coping" section rather than the "Doctors" section because they all make mistakes (they're human like us). Believe me, this by no means will deter me from going gluten-free and sticking strictly to it. I know I have a problem with gluten... there's no doubt in my mind.

I just had to get this off my chest, as I've heard this issue twice in the past month! I wonder if the 2nd doctors in these cases knew that if their patients were on a gluten-free diet, the blood & biopsy wouldn't show anything unusual. I wonder what led the 1st doctors to give the diagnosis in the first place (I'm assuming it was more difficult then to get a diagnosis than now) What are these doctors doing? Maybe this should be in the "Doctors" section after all... :blink:

Gretchen

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That's why they call it a medical 'practice'. They are all still practicing and WE are their guinea pigs. :lol: Maybe someday they will get it right. Sometimes practice makes perfect. But I'm not so sure with some doctors who are working with outdated celiac 'profiles' and other celiac myths and misinformation. <_<

Fortunately we know our own bodies better than any doctor can tell us with all their sophisticated tests. I still think reduction of symptoms following a gluten-free diet is a pretty good diagnostic test in itself. However, my second choice is Enterolab. :D

BURDEE

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I don't know what to think of that. It seems... backwards. Yet another sign that a lot more education is needed for doctors who are going to toy in this field. (Though, quite frankly, any doctor who's been through basic bio-chemistry ought to be able to deduce from first principles that your test will be negative if you haven't been eating gluten, so there's really no excuse, even with a lack of education on the specifics of the disease.)

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Celiac is one of the most mis-diagnosed problems in North Amercia. The reason is that Doctors here thought of it as a "rare" disorder. NOW they are starting to realize how common it is and are working harder to understand it. I think that if we were in Europe (where Celiac has been understood for longer) we wouldn't be hearing as much about the mistakes the doctors make. Sure they are human, and will make mistakes, but we will see less, I think, as the doctors realize how common Celiac is.

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Celiac is one of the most mis-diagnosed problems in North Amercia. The reason is that Doctors here thought of it as a "rare" disorder. NOW they are starting to realize how common it is and are working harder to understand it. I think that if we were in Europe (where Celiac has been understood for longer) we wouldn't be hearing as much about the mistakes the doctors make. Sure they are human, and will make mistakes, but we will see less, I think, as the doctors realize how common Celiac is.

You should try being dignosed over in Australia - only how many years behind? lol

A thought on the diagnosis reversal though... is it possible that because they have been gluten-free for so long that they no longer have the symptoms on being tested (fairly logical if gluten-free), but that if they return to eating gluten it'll have to be reversed again?

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That's what I'm thinking, Mydnyt. I don't know what upsets me more... the celiac diagnosis loss of credibility or the fact that these people might still be celiac and are now hurting their bodies.

As beautiful as Australia is, I sure glad I'm not there through the diagnosis.

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I'd just hope that they get themselves retested after being on gluten for a while and not wait for any serious symptoms.

Yeah, a bit behind everyone sometimes... but I've been lucky. Only 5 yrs before a new GP figured this out, and the only other prob I have my old GP picked up straight away :)

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I have had a diagnosis flip flop since 1989.

I was originally diagnosed with Celiac Disease back in 1989. After a year on the diet with no improvement, the dr. changed his diagnosis to Crohns. Well, 2 years ago, the bloodwork and biopsy confirmed Celiac Disease 100%. So I have been back and forth, back and forth.... Oh well, at least now I know 100% for sure what it is and just have to give it more time than 1 year (almost 2 yrs. on the diet and still no change in the diarrhea)......

Karen

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Karen, have you determined if you have other food intolerances that are contributing to the problem?

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Right now he has me on also a dairy free/sugar free/caffeine free/soy free diet along with the gluten free...... at least until I have the colonoscopy on September 28th. The results of the blood tests will tell us which way to go from here.... he is checking for numerous things, i.e. collagenous colitis....

I have to admit that since I have been dairy free, the gas and bloating have just about disappeared.... we just can't get rid of this darn diarrhea!!!!

Karen

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I'm right there with ya, Karen! I can't get rid of mine, either! Being gluten-free helped me gain all my weight back, and added a little energy, but nothing else has changed at all. My antibodies are still high and I still have lower back pain, abdominal bloating and pain, and a rapid heart rate. Being gluten-free wasn't the cure I was hoping for.

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    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
    • This does say it is for NCGS....so not  for Celiacs.  There is a drug being developed that may actually break down the gluten in the stomach before it hits the intestines.  However, that is still in clinical trials.
    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
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