Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

When Will It Finally Sink It?

prinsessa

By prinsessa
in Coping with Celiac Disease

Recommended Posts

prinsessa Contributor
prinsessa
Posted

I can't believe I keep glutening myself in stupid ways. Yesterday I was eating some herring that my husband bought. As I was eating it, I kept thinking to myself "you should check the ingredients first". So after eating 4 or 5 pieces, I check the ingredients. Of course it say "Contains Wheat" in bold print. I did the same thing last week. Why can't I get it in my head that I should ALWAYS check labels before eating? How long did take for everyone else to remember to always check labels? I'm so mad at myself right now.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


hez Enthusiast
hez
Posted

For me it took six months of not feeling better on the gluten-free diet. I then became very diligent about reading everything. It became a habit like washing hands before eating. It will become part of your life, just give it time.

Hez

Link to comment
Share on other sites
2kids4me Contributor
2kids4me
Posted

Took me a while too. Kids have been gluten-free since 2004 and just this spring I bought them skittles littles (after all the regular skittles are gluten-free, right?).

It was my son that noticed the wheat in the ingredients - after they ate some.

They didnt get sick and now I may know why - just noticed the thread about wheat starch....hmm still wont take the chance though and will stick to regular skittles

Link to comment
Share on other sites
katrinamaria Explorer
katrinamaria
Posted

i know exactly what you mean! i'm so mad at myself (and sick) right now because i did the same thing...i grabbed a little sleeve of trail mix with nuts, rainsin, and generic m & m's --thinking what could be wrong with that? AFTER i finished the bag i lazily read the ingredients...wheat...my heart sunk cause i knew what was coming... now i'm trying to drag my sick, miserable self around campus mad for not being more diligent....grrr this is so frustrating sometimes....

.....sorry, needed to vent............

Link to comment
Share on other sites
spunky Contributor
spunky
Posted

You really have to stay on your toes with this. I usually stand in the store reading labels for quite a while, but then read the labels again at home before eating anything. I keep a list of safe ingredients and forbidden ingredients on the fridge with magnets so I can easily double check anything doubtful in the kitchen. Even as careful as I feel I am, almost everytime I go shopping, it seems I end up with at least one thing that I am afraid to eat after I double check it at home before eating it.

The last time I messed up, about two or three weeks ago, my neighbor convinced me to taste her special, really expensive beer. Since I've never been a beer drinker, it was just a total DUH moment for me when I took that swig to taste the stuff. It wasn't until a couple of hours later that I realized what I'd done. Fortunately, I got only mildly ill from that one.

My husband is getting pretty good at reading labels with me too, now. So, I guess two heads are better than one.

Link to comment
Share on other sites
CarlaB Enthusiast
CarlaB
Posted

I'm 9 months gluten-free and wouldn't dream of eating something without checking ... I guess you just have to get sick enough times before you figure out you need to read ... hopefully this is your last time!!

Link to comment
Share on other sites
aikiducky Apprentice
aikiducky
Posted

You can teach yourself a new habit if you take your time to do it and make it into a bit of a game. Like decide that this is "Read The Label Week" and read the label on everything you eat this week, even though you are absolutely positively sure that it's gluten free. Read the labels on everything you use in cooking even if you already bought it ages ago and have been cooking with it for weeks. Just every time you take a package of food in your hand, read the label. The idea is to get ridiculously obsessive with it to make it into a habit. Read every label thoroughly before you put it in your shopping cart. Then again when you put it in the cupboard. Then again before cooking.

I bet you have yourself a new label-reading habit before you even know it. :D:D:D

Pauliina

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


2Boys4Me Enthusiast
2Boys4Me
Posted

Reading labels can certainly be a pain in the ... It has happened where I've read the label and seen nothing suspicious but called the company anyway and sure enough - it's usually the last or near the end of the ingredient list. First I check the bold allergy info line. Then I read the label from top to bottom. Then I put the item in my cart. Then a bit later, before I pay, or while I'm in line at the cashier, I read it from bottom to top. You'd be surprised how many times you catch a forbidden item by reading from last ingredient up to the first.

Link to comment
Share on other sites
TinkerbellSwt Collaborator
TinkerbellSwt
Posted

My thing is.. I read the label. I havent gotten sick yet.. but there have been many times that I dont read it for some reason until I get home. I dont know why I do this... it makes me nuts. So, I end up either returning the items, which I dont like to do, or throwing them away. gggrrrr.. I should save the middle man and just throw my money in the trash! :P

Link to comment
Share on other sites
2Boys4Me Enthusiast
2Boys4Me
Posted
My thing is.. I read the label. I havent gotten sick yet.. but there have been many times that I dont read it for some reason until I get home. I dont know why I do this... it makes me nuts. So, I end up either returning the items, which I dont like to do, or throwing them away. gggrrrr.. I should save the middle man and just throw my money in the trash! :P

Throw the $$ my way. I'll PM my address. :P

Link to comment
Share on other sites
All-about-March Newbie
All-about-March
Posted
My husband is getting pretty good at reading labels with me too, now. So, I guess two heads are better than one.

This is what helps me - do groceries with hubby or friend. Read ingredients out loud to each other. Laugh at each other for what the other cannot pronounce. Wonder about consumption of what cannot be pronounced. :huh: Then have some fun with the grocery store clerks when you catch them 'eyeing' you for being there for 4 hours. :P

Link to comment
Share on other sites
prinsessa Contributor
prinsessa
  • Author
Posted

Thanks everyone. The thing is that I have been gluten free for about 6 or 7 months now so feel that I should know better. I ususally check everything and won't eat stuff if I'm not sure it is gluten free. I don't know if it is the brain fog from getting glutened the first time because I will usually forget to check labels a couple of times after that. I don't get horribly sick, but I do feel bad enough that getting glutened is not fun. I need to tell DH that to remind me to check every label at the store. I guess I am mad at myself because I am trying hard be be gluten free, but I end up glutening myself when I should know better. I'm glad I'm not the only one who does it though ;)

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity...
    2. Nacina
      - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy...
    3. trents
      - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo the "gluten challenge" before testing but you need to understand that the...
    4. Fluka66
      - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this...
    5. Moodiefoodie
      - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well. I also...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748
    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      14 year old with Celiac & EOE still suffering...

      By Nacina · Posted

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
×
×
  • Create New...