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Undiagnosed Celiac And Gastric Bipass Surgery?
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Hello everyone,

I spent years figuring out and understand me reading the web non stop to learn that I have celiac disease. I understand the situation probably than most people and all the illnesses connected to it. Why my life gets better I'm noticing how many of my relatives and friends might and probably have it. My jaw drops when I think about it all. It's quite frustrating to know how bad it is in my opinion.

My cousin is a childrens psychologist who had gastric bypass surgery because she told me she has "metabolic syndrome". She is so bent on believing in mental health that she believes im the one who is insane. It's probably because I have a highschool education and i know too much but I suspect my I.Q. is through the roof (if that's what you want to call it these days). Research about Metabolic syndrome was done in the 60's and 70's, and i read for awhile and did some searching on the web about how there could be a link between metabolic syndrome and celiac disease. Which even before I read her text I myself what thinking she was a celiac because it just made sense to me, because I think everyone in my family has celiac disease, and I won't stop till everyone of them gets tested.

She wants nothing to with me now, told me to go get therapy. Told me "I'm completely fine, what do you not understand". She's completely fine because she is also I suspect on an anti-depressant which I don't believe in the use of anti-depressants. If your body is saying I'm sad to your brain then there is something wrong with it. This goes for other people I'm struggling to talk to in my family who want nothing to hear or listen to me on why if they are on an anti-depressant and are celiac they are going to be numb to the pains of their stomach. I noticed a year ago when I was on an anti-depressant. Just because you feel better mentally does not mean that you are not causing more problems by being medicated and naive to your own body.

What potential complications would my cousin have if she goes on living her life trusting her doctors, and her books, and not my highschool educated smart ass self. My mother passed away from cancer at age 15. She had it for 5 years. I understand now that she had undiagnosed celiac disease. I understand how people I know who potentially have celiac disease dislike me for telling them to get tested because they are on anti-depressant and feel great, when it's medicated self denial.

josh

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Josh, almost everyone on this Forum understands where you're coming from--after we either figured out we had celiac or were actually diagnosed with it, we informed our families and especially targeted those relatives who we just KNEW had celiac. We thought we were saving them all from a lifetime of pain and suffering....but, you know what? They didn't want to hear that they had celiac, and they certainly didn't want to follow "that awful diet that so-and-so is now following." Rather than being grateful, they turned deaf ears towards us and hoped we'd just go away. Even those relatives of mine who realized that the many terrible symptoms from which they'd been suffering for years could probably be attributed to celiac just could not bring themselves to adopt the diet to feel better. I only bring up the topic of celiac occasionally when I see my extended family, because I don't want to drive everyone away. Recently, my uncle was sharing with me that he has horrible arthritis, headaches, dizziness, and night blindness. I just casually said that perhaps he should get tested for celiac the next time he sees his doctor. I doubt that he'll follow through, though. His sister (my aunt) looks emaciated and has hardly any teeth or hair left, even though she's only 65. Her son has told me that she suffers from terrible digestive issues, but all he has said to me is, "Oh, yeah....I'll have Mom look into that celiac thing." Of course, nothing ever happens or changes.

Many of us here on the Forum say that rather than seeing dead people, we "see celiacs" everywhere. We suffered so much from years of undiagnosed celiac, we just want to save the whole world. However, most people don't appreciate learning that they have a disease that will put a dent in their social lives. Nowadays, when I'm served a special meal at conferences and people at my table ask me why, I simply educate them about celiac. By the end of the meal, either people have self-diagnosed themselves as possibly having celiac or say that they know a relative who might have it. Once it becomes THEIR idea to explore the possibility of having celiac, I no longer feel like a know-it-all who is trying to impress my will upon them. This is something that people must come to terms about themselves--you can't change their thinking unless they're open to considering the possibility.

So, although it is mightily tempting to rescue your family members, you might stop bringing up this topic with them....and simply wait for them to come to you. As irritating and senseless as this seems, you and your family will be happier for it. You need to stop obsessing over something that cannot be changed--and, no, you don't need therapy. You just need to accept things as they are and go on with your life.

Believe me, over time things will get better. In my family, my son immediately accepted the diagnosis, but my mother took a year to accept that she had it because she didn't want to give up sourdough bread. My daughter refuses to get tested even though she's had symptoms since she was four; rather, she wishes to wait until a treatment is available. Someday when she wants to have children, though, she might change her mind, since infertility is common in young women with celiac.

So....good luck to you! And, please, consider taking a step back and only bringing up celiac if someone else brings it up first.

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My mother had ms. Recent studies show that children of ms'rs have celiac 32 more times than most people. My brothers and sister refuse to believe that and just ignore me. My two nieces have celiac. My cousin has celiac. Obviously my brothers think of this as a "female" disease. ha ha and these are college educated professionals who are very intelligent. People simply can't believe that eating wheat can lead to a disease. My father always asks how I'm feeling and is supportive. My children insist that I follow my protecol and always try everything gluten-free and often find that they like it. My sister even accused me of inventing a disease and giving it to myself! So if I were you, I'd take rosetapper23's advice and just stop approaching the subject. You can't save the world.

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My mother had ms. Recent studies show that children of ms'rs have celiac 32 more times than most people. My brothers and sister refuse to believe that and just ignore me. My two nieces have celiac. My cousin has celiac. Obviously my brothers think of this as a "female" disease. ha ha and these are college educated professionals who are very intelligent. People simply can't believe that eating wheat can lead to a disease. My father always asks how I'm feeling and is supportive. My children insist that I follow my protecol and always try everything gluten-free and often find that they like it. My sister even accused me of inventing a disease and giving it to myself! So if I were you, I'd take rosetapper23's advice and just stop approaching the subject. You can't save the world.

Welcome to the forum Floral! I am male so I agree celiac is not a " female" disease. they do say more women get celiac than men, but men have more severe symptoms. I don't remember where I read that, or nessecarily agree with it either.. Regardless, it is good to have you with us to share and learn about celiac disease! :)

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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