• 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   04/07/2018

      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
tuxedocat

Is This Anyone Else?

Rate this topic

Recommended Posts

Basically - until I was gluten free, I was in a complete fog. Spacy, detached - learning issues despite testing with high intelligence, perpetually confused, ditzy. I had trouble holding any but the simplest jobs. Couldn't think my way out of a wet paper bag, and later on, struggled with brittle Graves Disease which impacted my ability to do physical work. Had trouble learning to drive, following directions... constantly collided with things and dropped things. There was a long time that I was suspected of being on the autistic spectrum and or severe ADHD. I felt disconnected from my body to a very severe extent and like my thoughts and feelings were in pieces that I couldn't make sense of. I dropped out of high school, and struggled in college classes.

When my diet's handled, I don't have ANY of this.

Gluten issues didn't even begin to enter suspicion until 2007 when I started actually experiencing physical symptoms, though a sign could've been in 2004-2006 when I was on Atkins and mysteriously actually felt competent for the first time. Then the suspicion got shoved under the carpet again because I was found negative for celiac and my symptoms were chalked up to graves disease.

I recently went back on gluten free and find I feel a lot better.

I am a perfectly normal and functioning adult human being when my diet is under control. It doesn't change the fact that i am 38 and I've lost most of my life to being in a fog :/ I may have to repeat some of my coursework this semester because it was so bad before I went back on gluten-free.

Most recently, I lost two years on account of being sick (let go from previous job, had a flare up of my thyroid again, and couldn't go back to doing physical work) so I went back to school - but if I had to work, I have no idea what I'd do because I've been out of that field for a while now.

:/

Share this post


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


I lost many years due to this condition. I've got a job now, but it isn't optimal and I'm looking for a better one. It is going to be a long road. I'm so glad to have finally been diagnosed.

Share this post


Link to post
Share on other sites

Yes, I too lost a lot of my life to gluten. Of course, I didn't realize it until reading about celiac, and the light bulbs went off in my head. (of course THAT could never have happened, had I not went gluten-free! I couldn't think while eating gluten!)

My parents were poor farmers and we never had health insurance. In one way, that life saved me, because we grew our own food. What is now called "organic". Very little was ever purchased at the store.

Mom made everything from 'scratch', including canning our own pickles and ketchup. Our meat was from what we raised.

Dad was picky about how he fed the animals that he butchered for family consumption, and how the milk cow was fed.

I was an asthmatic, sickly, wisp of a child, to the point my parents were teased that they never fed me. My uncle in another state was a dr, and his wife sent my mom a nutrient drink for me. After that drink, I got obese, and fought my weight the rest of my life. (wish I knew what that was!)

While I was a good student for the most part, I have very little memory of much my life, childhood included. I am floored at how some people remember details of their childhood, where I can't remember years! Celiac brain fog now explains that to me.

As an adult, I never caught viruses. I read here, somewhere, about our immune system being in such overdrive battling the poison we kept putting in, that some of us don't catch viruses. That makes sense. I have not had a cold in 35 years, or the flu in 30.

However, I still live in a farming community, and every fall for as long as I can remember, I get a lung/asthma/sinus problem. I figured out years ago it had to do with harvest. Now it I know why! Gluten in the air!

I can trace IBS symptoms to the poorest times of my life. IE eating more 'cheaply' by eating breads and pastas.

I can trace my worst memory lapses to that time also. My poorest times were my most stressed, and I always thought it was due to 'nervous breakdowns'. Now I know my missing parts were induced by gluten.

Though I never 'caught' illness, I have been ill all my life. I just ignored most of it and went on. Thats life and aging, right?

Dr's offered pills to mask symptoms, but I always refused. I thought it was part of living to be sick and aching.

The 30+ years of joint pain, boils, swollen lymph nodes, raging heartburn, bouts of disabling exhaustion, 'sensitive system' that gave me "D" or constipation, depression, low self esteem, grumpiness, sinus aching, anal itching, constant upper back pain, edema, hair, skin and nail problems, etc... have all disappeared with going gluten-free.

Being sick isn't part of living.

I am more than a perfectly functioning human now. I have a sense of humor, I laugh! My family would SLAP food out of my hand, were i to try to eat gluten again. (which I never will!) They love the new me, but not more than I do! I feel like I have been given a second chance at life!

  • Upvote 1

Share this post


Link to post
Share on other sites

Wow, guys, these posts make me choke up in tears. I too feel my last 20 years or so have been lost. I am so thankful I have finally found something that works (which is to give up gluten). I messed up royally in college, stayed at a job I hated, all because I had no energy or joy for life. I turned to alcohol for some bit of solace.

I ate my "nutritious" breakfast every morning, which consisted of a sandwich of whole-grain bread and soy burger, unintentionally poisoning myself for the first meal of the day...

I now feel so much better and rested during the day. I have only been gluten-free for three days, but I want to shout from the rooftops how much better I feel. Although I regret many, many decisions I have made while in the "fog" I am at least glad I feel better now and can have a better future.

Share this post


Link to post
Share on other sites

The first episode of (what I now know is) DH that I remember I was 15 years old .The first "problems" (as my stepmother would call them :rolleyes: ) I can remember I was age 8.

I was not "officially" diagnosed until I was 54.

That is A LOT of time between first symptoms and diagnose <_<:angry::(:angry::(:ph34r:

Share this post


Link to post
Share on other sites
Ads by Google:


Not my whole life. I lost my teen years to something else. I strongly believe I lost only my college years to celiac disease. I had a severe GI infection my first semester, during finals, and after that is when I believe I became gluten intolerant. I was not diagnosed, however, until years later and it severely affected my ability to live a functional life. Attending classes was extremely difficult. At one point I was in a wheelchair due to multiple stress fractures in my leg bones and thought I was going to be disabled for the rest of my life. I ended up only able to go to a community college taking 3-6 credits a semester for an AA degree. It's only now that I've finally gone back to University full time for my BS when my health is finally under control.

Share this post


Link to post
Share on other sites

I lost a lot of time to misdiagnosis and mistreatment, including the years most people are getting established in their careers and having children. When I first made the decision to go gluten free I was of course afraid that it would be another dead end and I wouldn't get better, but I was equally afraid that I would. I was afraid that if I had suffered for all those years when the answer was so simple I would become even angrier and more bitter.

Fortunately I was wrong. I experienced marked improvement very quickly and as the symptoms went away, so did all that anger. I can't get the lost years back. But if I would continue to lose more time to anger and resentment that would be on me. Life is too short to waste any time. All I can do is go forward from where I am and try to live each and every day to the fullest in the most positive way I know.

Share this post


Link to post
Share on other sites

Hi.I am 54. Have had alot of problems with my health, but could find no reason. I have fatigue, joint pain, leg cramps, cronic diareah, anxiety, panic attacks, brain fog, anger, depression, hyperthyoid. I suspect I have a glutten intolerence, but have never been tested. The doctors just labed me with irritable bowel, but that's not good enough for me. I really need relief. I am going to try going glutten free. I will let you all know what happens.

Share this post


Link to post
Share on other sites

These posts make me emotional too. All these symptoms are ringing so many bells. It's amazing to hear people talk about memory problems because usually people don't get it at all when I talk about memory issues. I don't remember, as another poster said, whole years, most of my childhood in fact. I've been complaining of a bad memory since I was a young teen, my dad used to say it was because I blanked out my childhood because of operations (plastic surgery and stuff) but it's continued. I started getting depressive symptoms in my teens too although it didn't explode (huge anxiety/depressive) until my 30s when I was also diagnosed with ulcerative colitis. In the past I have wondered all kinds of things about what I might have. I have never got many answers from the cognition difficulties which come with a low and yet don't really seem to come under the umbrella of depression. Three years of gluten free did make me feel a lot better but I don't think memory will come back unfortunately. I didn't have the depth of low during those three years that I had this year after a few months back on gluten (took months to put two and two together unfortunately) - now I'm convinced that for me, a major factor, even more than digestive disturbance is behaviour. It's a shame it's not easier to diagnose (without a clear diagnosis we can drift back into gluten) and that so many of us have take so long to reach the discovery but at least we have. These days I keep saying to everyone, whatever their problem, have you tried going gluten free?! :P

Share this post


Link to post
Share on other sites

PS: It can also be sad to think who we may have been without gluten and what we may have achieved/experience. I can only say now, after hanging out with some incredibly vibrant 70 year olds (I'm in my 40s) that there's still time for many of us to fulfil our potential now we are free - or at least on the road to recovery.

Share this post


Link to post
Share on other sites


Ads by Google:


I've lost quite a bit, like a lot of you. Career, Wife, child, life that I had built.

If I dwell on that, I will be lost.

I'm using this as a way of starting over.

I recall having a lot of good times when I built my first ME, building my new ME should be even better.

Share this post


Link to post
Share on other sites

Yes, I too lost a lot of my life to gluten. Of course, I didn't realize it until reading about celiac, and the light bulbs went off in my head. (of course THAT could never have happened, had I not went gluten-free! I couldn't think while eating gluten!)

My parents were poor farmers and we never had health insurance. In one way, that life saved me, because we grew our own food. What is now called "organic". Very little was ever purchased at the store.

Mom made everything from 'scratch', including canning our own pickles and ketchup. Our meat was from what we raised.

Dad was picky about how he fed the animals that he butchered for family consumption, and how the milk cow was fed.

I was an asthmatic, sickly, wisp of a child, to the point my parents were teased that they never fed me. My uncle in another state was a dr, and his wife sent my mom a nutrient drink for me. After that drink, I got obese, and fought my weight the rest of my life. (wish I knew what that was!)

While I was a good student for the most part, I have very little memory of much my life, childhood included. I am floored at how some people remember details of their childhood, where I can't remember years! Celiac brain fog now explains that to me.

As an adult, I never caught viruses. I read here, somewhere, about our immune system being in such overdrive battling the poison we kept putting in, that some of us don't catch viruses. That makes sense. I have not had a cold in 35 years, or the flu in 30.

However, I still live in a farming community, and every fall for as long as I can remember, I get a lung/asthma/sinus problem. I figured out years ago it had to do with harvest. Now it I know why! Gluten in the air!

I can trace IBS symptoms to the poorest times of my life. IE eating more 'cheaply' by eating breads and pastas.

I can trace my worst memory lapses to that time also. My poorest times were my most stressed, and I always thought it was due to 'nervous breakdowns'. Now I know my missing parts were induced by gluten.

Though I never 'caught' illness, I have been ill all my life. I just ignored most of it and went on. Thats life and aging, right?

Dr's offered pills to mask symptoms, but I always refused. I thought it was part of living to be sick and aching.

The 30+ years of joint pain, boils, swollen lymph nodes, raging heartburn, bouts of disabling exhaustion, 'sensitive system' that gave me "D" or constipation, depression, low self esteem, grumpiness, sinus aching, anal itching, constant upper back pain, edema, hair, skin and nail problems, etc... have all disappeared with going gluten-free.

Being sick isn't part of living.

I am more than a perfectly functioning human now. I have a sense of humor, I laugh! My family would SLAP food out of my hand, were i to try to eat gluten again. (which I never will!) They love the new me, but not more than I do! I feel like I have been given a second chance at life!

I am so moved by your post!! I can relate, most of my life was in a fog.

Share this post


Link to post
Share on other sites

As I read these posts I feel so thankful it's not just me.... Don't get me wrong, I would never wish this hel* on anyone. I spent so much of my life feeling like this was in my head though...... I didn't realize until I was a teen that something was wrong. Nothing made sense at school and I was hurting all the time, and so much of the time I couldn't explain what even hurt. I even resorted to self harm as a teenager and even as an adult at my lowest moments... I so badly wanted someone to make me better. After being in a fog of depression and pain, I spent 5 years REALLY sick, getting worse everyday until this last year when going gluten free and finally getting a diagnosis of celiac disease changed my life. I am thankful for my new found wellness, as I have never felt better. I grieve greatly for all the pain and missed moments and lack of memories this disease has caused. My beautiful 13 year old daughter texted me from school this morning, she needed some information for an assignment.... She needed to know how old she was when she walked and what her first word was. I am the kind of mom who would know that information off the top of my head, regardless of the fact I have 5 children. I was SO sad.... I guessed, good thing she can't remember either :) I understand now healing is a process that involves more than just my gut.

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

  • Who's Online   16 Members, 0 Anonymous, 1,139 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.
    Source:
    cnbc.com