I Can't Wrap My Head Around This...

Rate this topic

Recommended Posts

Essentially my issue is this...

I did the gluten challenge, and had my blood test, now I am having to wait till after the bank holiday weekend to make an appointment the doctor has asked me to make to discuss the results. I am expecting the worst, as I was told I would not be called in if they were normal....So I sort of feel like I am on a 'gluten count down'. I don't want to stop just yet in case they want to do any further tests (which would require me to still be eating the stuff), but I feel my gluten eating days may well be numbered....

Whilst I was doing the gluten challenge I hated it, and only ate what I had to. I generally am quite a healthy eater, yet yesterday I was compelled to get a Chinese takeaway, I knew it would make me feel horrid, and its something I would only eat once in a while, but I felt like I had to get one in maybe before it was off limits forever!

The same compulsion made me buy a bag of those soft, fresh cookies from the in store bakery at the supermarket at the weekend.

I suddenly feel like I need to have 'just one more' of the things I do like, that maybe I only eat occasionally... because there is some deadline looming which means I will never have those things again.

What I can't get my head around is the fact of one potentially one day very soon a lot of foods I have been eating are likely to suddenly be off limits. It's the same food, and all that will have changed is knowing what the cause is, as opposed to guessing and actually having a name for the reason. It is somehow driving me to make myself feel terrible in trying to have the things I enjoy one more time all in a short space of time....and of course I am aware that I am also likely to be causing more damage with a gluten overload, as it is way more gluten than I would normally even have, as my diet is normally not even that high in gluten!

I am being an idiot...and I know it, but I am finding it hard to be rational....

Share this post

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

I know very well how you feel! Like you, I am awaiting diagnosis. Like you, I have been eating foods PACKED with gluten, because the thought of them being "off-limits" is frightening.

For me it's the chocolate. Well, it was. I binged last week on chocolate, because I know I might not be able to have it any more. That was last week. THIS week it's going to be baked goods, I can guarantee you that. I'm already started on a chocolate cake we had for dessert Easter Sunday, and my Mom let me keep for leftovers :P It's quite big, quite delicious, very moist, and quite very well sickening <_<

Actually, craving baked goods and sweets is a small symptom that you might have coeliacs, but if you find out you DO (and I for that matter) have coeliacs, just think of those foods as poison. Because for us, they are! We can literally die. Now no, not right away, but it's not worth the pain we can go through.

Don't think yourself an idiot, that doesn't help. I started to think like that last week, but got over it when I joined this forum, and read how to deal with this.

Share this post

Link to post
Share on other sites

I can only say I've been there and I understand.

If its any consolation (in a sick, twisted way) if you do have an issue with gluten, and it does invoke symptoms like D or C or nausea - you will probably NOT have a hard time staying away - once you make the correlation. Because when it becomes clear, it typically becomes VERY clear. And you will avoid it like the plague.

As an example: Junior Mints were my safe go-to treat starting gluten-free. I ate a ton of Junior Mints. Now, after getting semi-sick on them once, very sick a second time, and pretty sick on another mint product - I am steering very clear of mint flavored food. My reaction isn't from gluten, I don't know WHAT its from, really, but the association has been made abundantly clear to me. And while I hated the thought of losing reliable gluten-free junk food (hah!), the consequences became too unpleasant to ignore.

You'll get there. I promise. I look in a bakery window and resist the urge to run away. Not because I want to eat the stuff, but because I just don't want to be near it.

It's a process, a grieving process, I think.

Share this post

Link to post
Share on other sites

I don't know if UK doctors make you go for an endoscopy to confirm the blood test or not. If so, you theoretically have a reason to justify continuing to enjoy your favorites until you have the procedure.

Your post made me wonder what I'd want if I knew it would be my last meal. I thought Lobster or Stone Crab with Drawn Butter, Filet Mignon, twice baked potatoes, or stuffed peppers or mushrooms, a nice light salad with good cheese, and some kind of really good chocolate for desert. Like dark chocolate ice cream or a flourless chocolate cake or the chocolate cream pie I make in a meringue shell. I'd have fresh red ripe berries along with the chocolate.

That made me laugh because my "last meal" would be lucious, but gluten-free. For me, the cravings took under two weeks to resolve. But it took longer to get over food envy. :(:(

Share this post

Link to post
Share on other sites

I didn't really get the chance to do the whole 'just one more' thing, I wish I did, I was really looking forward to a gluten challenge so I could eat all of my very favourite gluten laden foods for 3 months. But it does get easier, eventually you'll find cookies that are just as nice, and the chocolate thing? Most chocolate is gluten free, even the nice ones, just not the ones with cookies and stuff in them. I've found cheese corn chips which are gorgeous and salt and vinegar chips and all kinds of things. Sometimes its like - I just don't even notice anymore. Its a PITA when you are sick or tired and just want to do takeaway - but usually Indian and Thai are gluten-free - so that is ok.

Share this post

Link to post
Share on other sites
Ads by Google:

Believe me, I get it. I made myself a list of 70 some things to have for the last time and did not stop eating gluten until the list was done. It was tough because I was not feeling ill from gluten at all! And a year later, strictly gluten free, I feel no different. The odd time I wonder what it would be like to try some gluten but I would never, ever do it. I'm scared of the damage it would do to me internally even if I did not feel ill. In the beginning it was difficult to stay motivated, though I did. I quit cold turkey right after my last bite of croissant. (I was diagnosed by bloodwork and biopsy as I was in denial and just could not believe I had it. Testing was done as one sister was gluten intolerant so I thought I may as well get tested, feeling there would be no chance of me having it. Wrong!)

Now I realize that I can make most of the 70 some things wonderfully anyway. Well, except croissants and doughnuts and I have not yet made gluten-free phyllo. And really delicious chewy bread.

If you do have celiac, just know it truly does get easier. Trust me on this. Trust all of us on this! :) We're here to help you along.

Share this post

Link to post
Share on other sites

I didn't really get the chance to do the whole 'just one more' thing, I wish I did, I was really looking forward to a gluten challenge so I could eat all of my very favourite gluten laden foods for 3 months. But it does get easier, eventually you'll find cookies that are just as nice, and the chocolate thing? Most chocolate is gluten free, even the nice ones, just not the ones with cookies and stuff in them. I've found cheese corn chips which are gorgeous and salt and vinegar chips and all kinds of things. Sometimes its like - I just don't even notice anymore. Its a PITA when you are sick or tired and just want to do takeaway - but usually Indian and Thai are gluten-free - so that is ok.

Most chocolate IS gluten-free, however, in my own stupidity, I've cross contaminated my supply PLUS what I was given for Easter. Also, I don't want to buy more because it would be a waste of what I have...do Cadbury come from a gluten-free factory? I must ask them!

Anyhow, you are SO lucky you NEVER had the chance to do the "Just one more" thing. It's annoying, and actually becomes addictive. You gain a lot of water weight, not fat-weight, but water weight from the glycogen storage or whatever it is.

Cheese corn chips sound DELICIOUS, what brand are they, or are they homemade?

Share this post

Link to post
Share on other sites

Thank you all so much, your replies have made me feel so much better :)

I made the appointment to get my blood test results ..but as my GP is on holiday I can't get the results until the 24th of April! I will be trying for a cancellation appointment the week before, so fingers crossed though.

In the meantime, what you have all said has made a lot of sense, and helped to put things into perspective for me. Whilst I will continue to eat gluten (just in case of any further tests...I don't want to jump the gun and go gluten free and have to do another gluten challenge) I have been feeling the effects of my over indulgence, and I know I need to scale thing back a bit.

I still have a few gluten treats I would like to have before 'D Day" but maybe it is good that I have some time to think about the whole process and most likely accept that it is the gluten which is making me sick and that I need to take this time to say goodbye to it...

It means a lot to know that others have been through similar, and come out the other side, healthier, stronger and better for being gluten free :)

Thank you!

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

  • Who's Online   8 Members, 0 Anonymous, 277 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.


    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Marathoner/Cyclist/UltraRunner 36 year old female  I have had neurological symptoms for many years that have slowly gotten worse as I've gotten older of, what I believe to be, Gluten Intolerance.  Namely: anxiety and depression (I never sought an official diagnosis because I didn't want to be medicated), ADHD/bad short-term memory (My mom said that I've always "just been like that"), brain fog and extreme fatigue/naps ("It's because you're getting older, haha drink more caffeine, quit running so much," etc), occasional migraines ("It's hereditary"), and, more recently, joint pain ("You need to quit running and get more rest"). I have a tip-top diet eating LOTS of fresh organic green vegetables, fruits, whole grains, eggs, quinoa, seafood, chicken, limited dairy, and I take the right supplements for my activity level. I have never displayed irritable bowel with gluten but I did have more unstable bathroom habits while on training runs. After being so frustrated with my fading energy levels and brain fog, I did tons of Googling of my symptoms that apparently only *I* thought were concerning. I began to suspect a Vitamin B12 deficiency was to blame for my lethargy. I began to supplement with sublingual B12 and it seemed to help but I was super-confused as to why I wasn't absorbing B12 from my diet which was plentiful in B12.  After a bout with the flu this last winter, I suddenly developed a sort of whole-body rash that would develop after each and every training run. It was a strange rash because it happened right after finishing a run, and broke out primarily on my elbows, knees, buttocks, abdomen, and sometimes my neck and face. The bumps were more like HIVES, raised, sometimes as wide as an inch, and itchy. My airway was never affected and so I kind of tolerated it for awhile, thinking it was a strange phase.  When it didn't go away, I started Googling again. I came up with something called "food-dependant, exercise induced anaphylaxis." One of the triggers of FDEIA was wheat. And when I looked more into the multiple symptoms of gluten intolerance, a big fat lightbulb clicked on in my head.  All of the troublesome symptoms that I was blaming on age and running and heredity matched up pretty darn well with WHEAT. I immediately experimented by cutting wheat out of my diet completely and within 1-2 weeks, my annoying symptoms were gone, I felt rested, clearer minded, with a brighter mood. The post-exercise rash went away. I began thinking about trying to get an official diagnosis (am I gluten sensetive? intolerant? allergic? celiac?). When I learned that I would have to go back on wheat for awhile to get a diagnosis I decided to just live wheat-free without the diagnosis, however, part of me really wants to know! Is it possible to be both allergic to (post-exercise hives) and intolerant to (brain fog, adhd, fatigue, loose bowels, joint pain, anxiety) wheat? Thanks for any insight!!~~~~~~~~ For the record, I ate pizza about a week ago just because.....and while nothing significant happened after I ate, I broke out in a horrible hivey rash the very next time I went on a run. Bodies are strange!
    • Firstly,  I was diagnosed with Hypothyroidism 18 months ago.. (TSH 39) Synthroid 100 to start with and by this April was increased intermittantly to 212mcg...  My Levels seemed to decrease initially, but then began to rise again (still at 19.42),,  Dr. referred me to a specialist (saw in May) who suspected Malabsorption to possibly the "brand" of Med and switched to Eltroxin.  My other symptoms include -Weigh GAIN, High Blood Pressure (2 meds) Extremly dry skin especially on instep of feet and all over general dryness. Ocular migranes.  Extreme fatigue and fog brain.  I have tested positive intermittantly with microscopic blood in the urine, and had a internal bladder scope showing no problems....   So, being so frustrated with the cycle weight gain causes increase BP, tiredness etc.  I did a ton of research and Started a KETO diet.. My followup (after labs) with the specialist was 3 days ago and she advised that she had labs done on Thyroid - still at 19.26 - but advised that I am positive (2 tests)  for "Silent Celiac" and I am not absorbing my meds. I told her I had gone Keto and hadn't had any grains etc for 4 weeks and I still feel the same..     So where do I go from here?
    • Hey all, I wanted to see if anyone else was in the same boat. I saw a GI for the first time 3 weeks ago after my former (pediatric) GI recommended me to him. I was diagnosed with GERD (chronic acid reflux) as a kid, and she wanted me to continue treatment as an adult. My new GI talked to me about my symptoms and my diagnosis, and told me that he thought my GERD diagnosis was wrong. He wanted me to do some bloodwork, and stop taking my anti-reflux meds before an endoscopy, just to make sure nothing else was going on. When we got my serologies back, the only abnormal thing was that my tTG-IGA tested positive for Celiac (my levels were 14, with < 3 being negative). We did the endoscopy a week later, and that was completely negative. In fact, he told me that my intestines looked like textbook-worthy, healthy intestines. Because my results didn't match, he ordered genetic tests for HLA DQ2 and DQ8. I tested positive for both, including 2 sub genes for DQ2. Because of the genetic tests and the blood tests, he officially diagnosed me with Celiac. I know that Celiac typically isn't diagnosed without a positive biopsy, so I wanted to see if anyone else had had a similar experience. I'm already feeling better after being gluten-free for less than a week, so I don't think my GI is wrong, I just think this is a pretty strange experience.
    • Congratulations!  That is such great news!  I'm sure that you feel great getting that result and knowing your hard work has paid off. 😀
    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
  • Blog Entries

  • Upcoming Events