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

Trying To Understand Sensitivity.

desertkat

Recommended Posts

desertkat Newbie
desertkat
Posted

Hi,

I'm new to the Forum. I can't believe it took me so long to sign on as I was diagnosed almost 2 years ago with a positive biopsy. My symptoms over the years have been severe to moderate to none at all. I strive for a gluten free diet - but if I ingest gluten by accident and am aware of it I don't seem to react. I read how most of you become severely ill within hours and it isn't the same for me at all. This makes me very concerned that I might not be as gluten free as I think - and if that is the case is there damage going on inside my body that I am unaware of? Are there others who don't react as severely?

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted

My husband nor my son are 'big' reactors - very mild vague symptoms might be apparent after a glutening (night sweats - lighter coloured stools - moodiness)

You know - in some ways it is harder 'cos you don't know if you've been glutened :rolleyes: ...but all you can do is be ever vigilant - read labels, check with companies....try your hardest........you can't do much more than that can you?? ;)

:)

Puddy Explorer
Puddy
Posted
Hi,

I'm new to the Forum. I can't believe it took me so long to sign on as I was diagnosed almost 2 years ago with a positive biopsy. My symptoms over the years have been severe to moderate to none at all. I strive for a gluten free diet - but if I ingest gluten by accident and am aware of it I don't seem to react. I read how most of you become severely ill within hours and it isn't the same for me at all. This makes me very concerned that I might not be as gluten free as I think - and if that is the case is there damage going on inside my body that I am unaware of? Are there others who don't react as severely?

Hi.....I believe I'm in the same boat as you...LOL...although I was only diagnosed 5 months ago. I, too, have had all levels of symptoms over the years although at the time I had them I didn't know I had celiac disease. When I was diagnosed I was having no gastro symptoms. I've read that the learning curve is very steep and expect to make mistakes the first few months. Either I'm better at this than I thought I could be and haven't made any mistakes or I'm just not reacting to any CC. I, also, thought I might be ingesting gluten frequently and that's why I had no symptoms with accidentally glutenings and I might be doing damage unknowingly. But I've had 2 blood tests since first being diagnosed and my numbers have gone down dramatically to the point where they should be to be considered 'healthy' so I guess I'm doing OK. Hope that's the case for both of us.

desertkat Newbie
desertkat
Posted
  • Author

So, it sounds as though I'm not the only one who doesn't react much. My blood test came back negative, so I suppose another blood test wouldn't give me much information on what is going on inside. I did have a follow up colon check and they did say things appeared to be improving. I have been after my daughter to have a blood test since I read she has a 25% of being a Celiac. But then she may come back negative as well and I don't think I talk her into a biopsy at this stage of her life. Although I was unaware of the celiac when I was younger I can now look back over my life and pinpoint times when I was reacting - she has yet to have those types of symptoms, ever. Thank you all for responding so quickly, it's nice to talk to someone about this who understands.

kbtoyssni Contributor
kbtoyssni
Posted

I don't react much, either. My symptoms seem to decrease each year. Sometimes I'll go out to eat, my stomach feels not quite 100%, but it's hard to tell if it's gluten or just greasy food or what. I do find that cumulative gluten affects me. I was accidentally eating rice that had been manufactured on the same lines as wheat. My joints started hurting again and as soon as I cut out the rice, I felt fine. Anytime I start to feel not right, I have to do the double-check of everything I eat. This does not mean I am any less careful than I would be if I did react more. I am still very, very careful about everything including makeup and pet food and I do not eat anything that may have come into contact with gluten. I probably eat out a bit more than I should, but that's my most risky behavior!

Sharon Marie Apprentice
Sharon Marie
Posted

I also don't react. Except I do think gluten makes my arms and legs ache unbearably. It is very dangerous to not react as it gives us hope that it was all a mistake and we might not have celiac at all! My brain goes that way very often. Then I have to remind myself that I would not have been severely anemic and had totally flattened villi if I were not celiac. My tests were 100% positive. I know that by glutening myself I can do serious damage to my entire body.

Just keep the faith and stick with the diet. Not as easy as it sounds!

SharonMarie

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,140
    • Most Online (within 30 mins)
      7,748
    KP009
    Newest Member
    KP009
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.