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

It's Me This Time

NSG

By NSG
in Coping with Celiac Disease

Recommended Posts

NSG Newbie
NSG
Posted

My daughter was diagnosed with celiac disease in 1989. She was 6 months old and very sick. The DARK AGES for gluten-free diets and we have lived through all the wonderful changes over the past 17 years.

However, about 10 months ago, my neurologist asked me if I had hear about the link between Celiac and migranes. She took a full medical history and suggested I see a specialist. My GP was not happy and ordered the serology testing to be done. We have been a gluten-free household for over 16 years - of course they were negative! Her comment - if the test are not positive and STAY positive then it's not Celiac. Like she knows what she is talking about. I have to admit that the other members of our family eat gluten, just not a home.

The gastroenterologist told me that the serum test may never be positive, but given my family history for celiac disease [maternal aunt, 2 paternal cousins, and my daughter all have celiac disease] and other medical problems, a gluten-free diet would be advisible. So I tried it.

I have been feeling great for over 6 months. No joint pain or swelling, blotting, insomnia, or depression. I was off all the Rx and starting to exercise again. GREAT!!!

Then two weeks ago, we went out to eat at a local restaurant. Nothing different and normally gluten-free. Within 3 hours, both my daughter and I were sick. My husband was not. It had to be gluten.

Since then I have had a recurrence of the RA [joint swelling and pain], sinus infection, fevers, vomitting and diarrea, and an irregular period that has lasted over 13 days. My daughter is supportive and we have talked about how this is for the birds!!! But no one else seems to understand - my husband, my family members, my co-workers, etc.

For 16 years I have been helping my daughter through these attacks, but now I'm not sure I know what to do!!! It is so overwhelming...

Nancy

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

I just think the testing is just not accurate enough. If you have enough damage visible, and the medical professional can recognize it, then you can get diagnosed with Celiac. If not then you can get the murky title of gluten intolerant.

So many people have noticed they have become more sensitive to gluten after they start the gluten free diet. I think perhaps the body has healed to a point when it recognizes the gluten in the system again, the immune system goes all out, full force and the reaction is more intense.

L.

NSG Newbie
NSG
Posted
  • Author

Thanks!

I know that it will get better with time - but this reaction is my first with all the symptoms at once. It's been 2 weeks and I'm tired of feeling sick!

It's nice to know that other people have coped with this successfully! My daughter tells me to hang in there - but she has never known anything but a gluten-free diet.

It's one thing to try a gluten-free diet to get rid of related illnesses - another thing to accept that this is really Celiac. Thanks again!

Nancy

Girl Ninja Newbie
Girl Ninja
Posted

I agree! I used to mostly get hives and migraines. Since going gluten-free, if I do manage to poison myself, my reactions are WAY more severe. It causes my heart to race and I get the sleepy/ foggy head and prolonged constipation along with headaches and miserable hives.

beth g Newbie
beth g
Posted

My mom is feeling better - I tell her to hang in there.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks!

I know that it will get better with time - but this reaction is my first with all the symptoms at once. It's been 2 weeks and I'm tired of feeling sick!

It's nice to know that other people have coped with this successfully! My daughter tells me to hang in there - but she has never known anything but a gluten-free diet.

It's one thing to try a gluten-free diet to get rid of related illnesses - another thing to accept that this is really Celiac. Thanks again!

Nancy

First ((((((hugs))))). I hope you feel better soon I know it can take awhile but it will get better.

NSG Newbie
NSG
Posted
  • Author

Had a great day yesterday! First day that I was able to eat something other than applesauce and plain rice cakes.

Then late last night I got sick again. I know that I did not eat anything with gluten - and Beth and I have cleared out all the personal care products that had gluten in them! How long does this take to feel good again!

Oh, I have people who can eat real food--- I'm at work today with donuts and pizzelles everywhere I turn!!

UGH!!!!!!!!!

Nancy

Oh, I have people who can eat real food--- I'm at work today with donuts and pizzelles everywhere I turn!!

have = should have been HATE

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

Celiac.com Sponsor (A8-M):


NSG Newbie
NSG
Posted
  • Author

:) Thanks to all the support and information I have gotten from this site. It's been a week and I can finally eat a normal [gluten-free] diet again. I'm back to exercising, too!!

Thanks again!

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. Florence Lillian
      - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
    2. trents
      - trents replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

      Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

      @HectorConvector, Please try adding Niacin to your supplements. Low Niacin has a connection with suicidal ideation. Been here, done that. Niacin made me feel better mentally and physically. Omega Three fats will help, too. For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together. I know this works...
    4. Scott Adams
      - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojda...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s help...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,624
    • Most Online (within 30 mins)
      7,748
    Keylargo
    Newest Member
    Keylargo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Florence Lillian
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Florence Lillian · Posted

      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
    • trents
      Terrible Neurological Symptoms

      By trents · Posted

      Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Please try adding Niacin to your supplements.  Low Niacin has a connection with suicidal ideation.  Been here, done that.  Niacin made me feel better mentally and physically.  Omega Three fats will help, too. For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together.  I know this works because I've cracked some vertebrae and this combination relieves the pain.  I was prescribed opioids, but couldn't function or poop, so... I can highly recommend these vitamins for pain relief.   I adopted a paleo diet, the Autoimmune Protocol Diet which has been shown to improve intestinal health.  Improving intestinal health improves mental health because of the gut brain-axis.  Important neurotransmitter Serotonin is made in the digestive system.   Please Read... Association between dietary niacin intake and suicidal ideation: mediating role of C-reactive protein https://pubmed.ncbi.nlm.nih.gov/40859220/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s helped reduce symptoms before; sometimes dialing things back to simple, whole foods can calm inflammation or gut irritation. At the same time, your safety and mental health matter just as much as the physical symptoms. If the suicidal thoughts are feeling strong or hard to control, please consider reaching out for immediate support — in the U.S., you can call or text 988 for the Suicide & Crisis Lifeline, or go to the nearest emergency room if you feel at risk. You don’t have to handle this alone. It may also be worth checking in with your doctor soon to review what’s changed and see if there are adjustments or treatments that could ease the burning pain more effectively. You deserve relief, and you deserve support while you figure this out.
×
×
  • 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.