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

Am I An Anomaly?!


gluten cheat

Recommended Posts

gluten cheat Newbie

hi,

i was diagnosed celiac 5 years ago. i have since been on a mainly gluten-free diet. i don't eat much, but i do indulge occasionally, WITHOUT CONSEQUENCE. i almost never have a reaction, even when i really eat a lot of gluten over several days. my brother also has the disease, but is just the opposite. he is very sensitive and becomes ill if any gluten is ingested.

when initially diagnosed, my antibody count was through the roof. and, since embarking on the diet the last several years, nothing has changed. just had a test with a count over 300. all other levels such as calcium, iron, thyroid, etc. were perfectly normal, though! i feel healthy, energetic, and seem completely fine!

what can this all mean? am i just lucky? even if i am perfectly healthy, are there potential dangers because of my high antibody count?

from what i have read, i would guess that i am a highly sensitive, but silent celiac. am i still at high risk for something?

thank you so much for any insight...

al line


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

No, you aren't lucky. I think it's better to have a reaction, then you know you were glutened. You can't "indulge occasionally, WITHOUT CONSEQUENCE"..there are consequences, even if you do not realize it. You may not being feeling a reaction, but the damage is still being done....Celiac's have a 60% higher chance of stomach cancers when they are eating gluten. That's a consequence I am sure you do not want.

when initially diagnosed, my antibody count was through the roof. and, since embarking on the diet the last several years, nothing has changed. just had a test with a count over 300

Nothing has changed because you are not allowing your body to do any healing. You continue to gluten it, it absolutely can not heal.

Stop cheating..do what you know is right for your body.

tarnalberry Community Regular

you're a silent celiac. you don't get noticeable symptoms (well, that you connect to eating gluten, anyway), but you do still get intestinal damage and inflammation. this also makes you an 'untreated celiac' (since you still eat gluten - presumably at least a tiny bit once every two weeks?). this decreases your life expectancy by approximately 10 years, increases your risk for intestinal cancer and lymphoma, and increases your risk for deficiencies like anemia and osteoporosis.

Takala Enthusiast

You didn't say how old you were. But you're probably not over 30 if you're that cavalier about it.

I don't react overtly to gluten the way others do (but now that I'm 6+ years off, this is changing a bit, I can tell ) and I would have had a vastly different life if I had somehow been correctly diagnosed when I started having the other auto immune problems and arthritis flares, instead of having to figure this out by myself in my late forties by fighting with a neurologist over test results and testing myself out on elimination diets.

My old age will not be pretty even if I continue to thwart my other disease processes, but at least I'm doing better than I expected, not in a wheelchair, my brain is not too spacey, and I have outlived one parent agewise. But I will definitely have a much shorter lifespan because of the stress of the daily physical discomfort.

dream77 Apprentice

I have only antigliadin antibodies and the only reaction I have (I think it is from glutne) is neuropathy and raynaud's in a few fingers

i am only 31..

gluten cheat Newbie

thanks. i know i need to be more serious about the disease.

I am only 22 years old. I realize i must be a silent celiac, but it seems strange to me that i can eat so much gluten without a problem. traveling is always a time i steer off the diet. honestly, i can eat a LOT of gluten without symptoms. on my last trip, over a weekend, i ate several slices of pizza, a couple bagels, a donut, drank some beers, and other foods with "hidden" gluten, and never felt sick.

I am happy, energetic, and all my nutrient levels, etc. are perfectly normal. I have no symptoms or problems what so ever. is just being a silent celiac the explanation for this? all that i have read is that a small amount once and a while can go unnoticed. but i can ingest it almost daily, sometimes in large amounts. can i really have a antibody count off the charts without feeling anything?

i plan to go strictly gluten-free now to see if i can get my antibody count down. hopefully i have not done too much damage already.

can you please mention foods to avoid - other than the obvious - that may contain gluten?

thank you all

ang1e0251 Contributor

I think an endoscopy would tell the extent of damage for you. It could be worthwhile to your mental approach to your disease to schedule one.


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.

  • 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. - Aretaeus Cappadocia replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Finding gluten free ingredients

    2. - Aretaeus Cappadocia replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Finding gluten free ingredients

    3. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    4. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    5. - trents replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

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

    • Total Members
      132,902
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      I shop a fair bit with Azure Standard. I bought Teff flour there and like it. they have a lot of items on your list but probably no soy flour, at least not by that name. https://www.azurestandard.com/shop/product/food/flour/teff/brown/teff-flour-brown-unifine-gluten-free/11211?package=FL294 As mentioned in another answer, Palouse is a high quality brand for dry beans, peas and other stuff. I buy some foods on your list from Rani. I've been happy with their products. https://ranibrand.com/ Azure and Rani often use terms that skirt around explicit "gluten free". I've contacted both of them and gained some comfort but it's always hard to be certain. FWIW, my IgA antibody levels are very low now, (after including their foods in my diet) so it appears I am being successful at avoiding gluten. 
    • Aretaeus Cappadocia
      fwiw, I add nutritional yeast to some of my recipes. since going gluten free I eat almost no processed foods but I imagine you could sprinkle yeast on top.
    • knitty kitty
      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
×
×
  • 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.