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

Sensitivity To Other Foods.

Snag

By Snag
in Coping with Celiac Disease

Recommended Posts

Snag Rookie
Snag
Posted

So, I've been gluten sensitive since 2009, though showing symptoms as early as 2008. I went for a blood test at my doctor's to pick up allergies in '08, to no avail, though it was very evident that I was gluten intolerent (bloated, symptoms similar to IBS, lack of energy, rashes etc). I went to a Naturopath in 2011, and she picked it up immediate through the symptoms I shared with her. I don't think I've been "officially diagnosed" through blood tests or anything of that nature, but she urged me to steer clear of gluten and processed foods, and gave me a powder to put in juice every morning to repair my insides - I felt the best I had in years from heeding her advice.

 

However, recently, I've been patchy with sticking with that advice. Gluten seems to be in everything, and I felt pretty alone with the battle. I was the only one gluten intolerent in my family, so it was a hassle making myself separate dinners etc (I know, I had to get over this inconvenience!) Thankfully, I found this forum a couple of months back and have been ghosting around it for some time.

Anyway, I recently moved to the US (I'm Australian, married my groom a month ago who is Michigan born), and have since picked up on gluten free living, once more, with the support of my husband (he's a champ). I've been eating Udi's gluten free bread, found in the frozen section of Meijer supermarkets. Still, my gluten eating symptoms have been lingering, and have progressed to such a stage that there's been blood in my waste (TMI, I know. I'm just eager for help). I know whatever I'm eating is damaging my insides to such a degree that I'm getting bruised internally, ruining the lining of my intestines.

 

My question is, has anyone experience similar with other gluten free products? Is there something else I'm intolerant to, and I'm just not picking up on it? I would say my body has a worse reaction to eating these gluten free breads than to eating gluten in general (gluten free foods tend to have an instant reaction, whereas gluten products build over a few hours).

 

I know I'm not allergic to lactose. In fact, I usually feel great after a bit of cheese or a glass of milk. Could this be soy? Or another grain used in the breads?

 

This has probably been covered a multitude of times, but I thought a new post couldn't hurt.

 

Thanks, guys.

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

hello and welcome :)  and lolz there's no such thing as TMI around here!  

 

are you getting cross-contaminated?  i know it's hard to keep everything separate in a shared (with gluten eaters) kitchen.  

Link to comment
Share on other sites
Snag Rookie
Snag
  • Author
Posted

hello and welcome :)  and lolz there's no such thing as TMI around here!  

 

are you getting cross-contaminated?  i know it's hard to keep everything separate in a shared (with gluten eaters) kitchen.  

 

Thank you! And good to know. Learning social etiquette on forums can be quite daunting! :wacko:

 

It's a possibility. My husband is half joining me on the gluten free meals, although he takes a sandwich for lunch which is gluten filled. Sometimes I have made our sandwiches on the same bread board. Other times, not - but same reaction. I'll be careful over the next few days and observe! Thanks for the tip.  :) 

Link to comment
Share on other sites
GFinDC Veteran
GFinDC
Posted

Hi Snag,

 

Two words for ya, "elimination diet".  An elimination diet can help you pin point problem foods that may cause reactions.  But before you go down that road, it makes sense to do some basic things that might help.

 

Are you eating oats?  It is better to wait 6 months to a year before trying oats, as some of us react to them.

 

Any ingredient can cause a food reaction.  Celiac disease is not an allergy so it won't sow up on allergy testing.

 

Stop eating any processed foods for a month or so.  See if that helps.  Then slowly add one new food ingredient per week until you are better.

 

Sharing the cutting board is not a great idea.  It doesn't take much gluten to cause a reaction.  Getting all kissy-faced with the hubs with his gluten breath can cause problems too.  Make sure he is brushing and rinsing good before that sucky-face stuff or stick to cheek smooches.

 

Check pet food too, as sometimes that can get spread around on fur etc.

 

It is not real unusual for people to report ongoing symptoms for the first few months or even 6 or more months around here.  The immune reactions are not made to stop really quick or we would have big problems with germs that are in the environment.  Also gluten-free changes the food your gut bacteria get to eat too, and they may be unhappy with the change, or too happy.  Or some of both.  That can cause plenty of symptoms too.

 

And welcome to the forum, we are glad you are here! :)

 

Some tips:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

Link to comment
Share on other sites
notme Experienced
notme
Posted

o, and a huge help for me when i am trying to figure out what is making me sick is to keep a food journal and write down everything that passes your lips

Link to comment
Share on other sites
cavernio Enthusiast
cavernio
Posted

I either react to gluten free hot dogs, udi's buns, or both. I'm presuming it's gluten cc. I don't have an issue with soy, (no issue with tofu), I don't have an issue with corn, (corn on the cob is fine), I don't have a problem with whole rice, etc. But it really doesn't matter what in them doesn't make me feel good, I avoid them.

Link to comment
Share on other sites
dilettantesteph Collaborator
dilettantesteph
Posted

Yes, I do have problems with gluten-free products.  Some of us are sensitive to lower gluten levels than others.  Sensitivity levels seem to vary even among those who call themselves super sensitive celiacs.  Just because most celiacs can eat something doesn't mean that all celiacs can eat that thing.

 

The food/symptom journal and elimination/challenge dieting is a great way to find sources of cc or other food intolerances.  Be patient and you will get there.  I hope that you improve quickly.

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

Celiac.com Sponsor (A8-M):


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. 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...
    2. Zackery Brian
      - Zackery Brian replied to rsvtwin6's topic in Food Intolerance & Leaky Gut
      6

      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease...
    3. 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...
    4. 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...
    5. knitty kitty
      - knitty kitty replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,062
    • Most Online (within 30 mins)
      7,748
    Sherry Glaser
    Newest Member
    Sherry Glaser
    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

    • 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.
    • Zackery Brian
      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

      By Zackery Brian · Posted

      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • 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.
    • knitty kitty
      Joint swelling when ill even on gluten-free diet

      By knitty kitty · Posted

      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
×
×
  • Create New...