Jump to content
  • 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 Our Content
    eNewsletter
    Donate

More (Silly?) Questions From A Newbie!


jo-marnes

Recommended Posts

jo-marnes Rookie

Hi everyone,

So my bloodwork says celiac, awaiting endoscopy in next few weeks, so still eating gluten but trying to get my head around all things celiac in an attempt to be in some way prepared for going gluten free. My history is that celiac was detected after a food allergy screen due to 3 occasions of stomach pain. Other than that, no symptoms to speak of. Since blood tests, periods have stopped (malabsorption or low weight - not sure), I'm aware of bloating, always thought my memory and brain fog were just the way I am.... maybe now not so sure. Anyway, a few questions I need help with please;

1) Is amount of gluten eaten proportionate to the body's reaction? I.e. If I ate something with a trace of gluten, would my body react the same as eating a bowl of pasta? Please note I do not intend to do this... I'm just assuming it will happen by mistake!

2) How much MORE at risk am I of getting some kind of related cancer than a regular person?

3) Aside from bloating, which does not happen all the time, I do not really have many symptoms. How will I know if I've accidentally eaten gluten? Once going gluten-free, do you become more sensitive to it? Or will I just never know?

And in a case of really bad timing, I'm due to go back to my homeland of the UK for Easter with this new diagnosis. 4 weeks of living with friends and family who, as yet, don't know about this and I will have to not only try and explain what it is, why I've 'only just got it' and yet also educate at the same time. DREADING this. Feel like I may as well go back with 'freak' tattooed on my forehead. I don't know enough about it to answer their questions, I won't be able to eat what they make, I won't be able to dine in restaurants where we will be taken. I won't know where to get certain products and I certainly won't have my own toaster/ utensils/ pans to use at everyones houses. What do I do (apart from cry??!)

Thanks,

Jo xx


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

1) Is amount of gluten eaten proportionate to the body's reaction? I.e. If I ate something with a trace of gluten, would my body react the same as eating a bowl of pasta? Please note I do not intend to do this... I'm just assuming it will happen by mistake!

For a lot of us a trace will make us just as sick. Reactions do differ for some folks though. I can't say how your body will react but it is better to be super strict at first to allow the antibodies to resolve

2) How much MORE at risk am I of getting some kind of related cancer than a regular person?

Once you have been on the diet and healed your chances of getting a celiac related cancer will be no greater than the non-celiac population.

3) Aside from bloating, which does not happen all the time, I do not really have many symptoms. How will I know if I've accidentally eaten gluten? Once going gluten-free, do you become more sensitive to it? Or will I just never know?

It is fairly common for us to have a more noticeable reaction once we have been gluten free. There are some who are not as sensitive but many times once you have been gluten free you will be able to notice a definate pattern to being glutened. Reactions can be delayed for a day or two as the antibodies can take some time to build up. Sometimes things that we might not think are related to gluten like headaches, rashes, difficulty with thinking (brain fog) fatigue may be come obviously related to gluten exposure.

kareng Grand Master

there are people on here from the UK. Maybe you could post a topic asking for where & what to get. If you don't mind, tell them what city so you can get more specific info.

You can get " toaster bags" that you put bread in. You could get gluten-free bread & toast it that way. I assume they use aluminum foil? You can use it to cook with. Line a pan, cover a potato, etc.

See if this link will work. They are called Toast It. Google that for the bags. I was able to find some at a specialty kitchen store & saved shipping.

Open Original Shared Link free.com/index.cfm?dsp=public.products.detail&keyID=74592&gdftrk=gdfV22677_a_7c1014_a_7c3797_a_7c74592

That didn't work. I googles " toaster bags for gluten free"

India Contributor

Hi Jo,

I'd recommend reading around on this board as much as possible - it's the best source of information I've found.

I live in London so do message me if I can help at all with UK advice. Labelling for gluten is pretty good over here, especially supermarket own brands. A few places - Wetherspoons, La Tasca etc - label menus with gluten-free options.

I also carry around my own food kit - chopping board, knife, snacks etc - and make my own picnics if I don't know that I can rely on finding safe foods.

Good luck!

Archived

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

  • 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. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

    3. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    5. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748

    Kathy N
    Newest Member
    Kathy N
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.