• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
joshL

Undiagnosed Celiac And Gastric Bipass Surgery?

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

  • Upvote 2

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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/

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,917
    • Total Posts
      943,496
  • Member Statistics

    • Total Members
      67,100
    • Most Online
      3,093

    Newest Member
    Deena
    Joined
  • Popular Now

  • Topics

  • Posts

    • Good for you for trying to manage your health.  My only suggestion would be to find another doctor.  Obviously, he does not even follow standard recommendations for screening.  I would worry that he overlooks other things too.  It never hurts to get a second opinion.  Second opinions have saved my family from unwanted surgeries and incorrect treatment.   The IgA (Immunoglobulin A) Test, in the case of celiac disease testing,  is a control test.  If he had ordered it, you would have known if the results are valid or not.  Now you are left in diagnostic Limboland.  Again, my TTG was negative it has never been positive even in follow-up testing.   You can go gluten free for life.  My hubby did that 17 years ago some 12 years prior to my diagnosis (per the advice of his GP and my my allergist).  But he will be the first to tell you that I get way more support from family, friends and medical. I wish you well!  
    • Okay so I had a peanut butter milkshake from steak n shake last night. I'm nearly positive that every thing else I've had recently has been gluten free. I have been feeling like my stomach is acting up a bit lately, but after this milkshake it is so much more intense. I considered maybe I'm sensitive to dairy too, but in the last few days  I've had plenty of dairy that didn't make me react  like this. The steak n shake website didn't list any real specifics on ingredients for milkshakes. I read in other forums that some shakes use a malt mix or syrup ( which I didn't see mentioned on the site), but it is corn based. I called the my local steak n shake and the guy said he is "pretty sure" it's corn based.  I called the customer service line and they couldn't tell me if it was gluten free or not. I found ONE listing on a website that said all shakes were gluten free expect peanut butter and one other flavor. I know this seems like a lot for one shake, but I'm so tired of not knowing what makes me sick. Has anyone else had an experience with this or has anymore knowledge about steak and shakes products?
    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
    • Did you know that there are so many issues and questions surrounding celiac disease that even doctors who specialize in it find that the scientific data changes every six months, and this includes research data, new diagnostic and testing recommendations, and its connections to other diseases and conditions. In fact, many of us who think we have "arrived" and know it all might actually need a refresher course on the disease. View the full article
    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
  • Upcoming Events