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

New Here

Guest aparde

By Guest aparde
in Coping with Celiac Disease

Recommended Posts

Guest aparde
Guest aparde
Posted

Hi everyone! I am just introducing myself and I am new to the board although I lurk often. I am a mom of 3. My oldest daughter has been diagnosed with celiac disease for 4 years now. She is doing great although struggles with cheating sometimes at school. My dad also has celiac disease and I have been feeling horrible since the birth of my son last Feb so I am in the process of getting tested.

My baby has severe GERD but has yet to be diagnosed with celiac. Actually he hasn't been tested but the GI doctor knows that the GERD has been caused by something. He doesn't eat though and can not swallow foods except for nursing. He is now 13 months old and only weighing 17 pounds now. We work with a speech therapist for his swallowing issues. So my suspitions are that he does have something with celiac but who knows.

It is great to be here and I look forward to getting to know you all!!!

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Just a quick welcome and off to do dinner. Mighty glad that you have found us. As you know by know, there is a bundle of good information from these folks.

Lisa

Slackermommy Rookie
Slackermommy
Posted

Just wanted to say hello too. I am new as well.

:)

Lisa Mentor
Lisa
Posted

apardede:

It sounds that you have had many struggles. I don't have any experience to offer you, but others here can be helpful. This board is often quiet on the weekends, but kicks up on Mondays.

Hopefully, someone will chime in.

blueeyedmanda Community Regular
blueeyedmanda
Posted

Hi and Welcome to the board!

You will feel at home here. If you need anything just ask. You will find a lot of the answers you have here. This site has helped me so much. I hope it works for you too. :):)

Viola 1 Rookie
Viola 1
Posted

Welcome to both of you :D It's great that you have found the forum. It really is very helpful with great recipes and sometimes just fun, goofy posts :lol:

aparde, you have quite a hand full. Our oldest daughter wasn't diagnosed until she was about 37, although I spent years trying to get her tested. She just couldn't find a doctor who would listen to her until she moved to New Brunswick.

It's good that you are having your children done early to prevent any lasting side problems.

Guest lorlyn
Guest lorlyn
Posted

Just wanted to say hi and welcome. I am also fairley new and i hope all goes well with your children. My 10 year old daughter was diagnoised in November of 06 and we feel my husband has it to. I have never herd of Celiac disease and still can not understand why they have to put gluten in everything. You will learn alot on this board.

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

Celiac.com Sponsor (A8-M):


Guest aparde
Guest aparde
Posted

Thanks for the great welcome!!! I look forward to meeting everyone!

missy'smom Collaborator
missy'smom
Posted

Welcome! I was really sick for 8 years after my son was born. I'm really glad that you're finding answers pretty quickly.

Guest aparde
Guest aparde
Posted
Welcome! I was really sick for 8 years after my son was born. I'm really glad that you're finding answers pretty quickly.

Oh! I am not... I am really bad... I haven't been to the doctor. I am horrible about that. BUT we have been to the doctors so much with our baby that I feel we live there. I really haven't had time. I get really bloated at night with pain, constipation and then diahrreah, gas, pooched out belly until it is all relieved. It seems I am living on Malox. I decided that until Logan is feeling better that I will go gluten free for his health and mine since I am nursing. I am always on a milk free diet because he is allergic to milk... not a fun diet let me tell you... gluten-free and milk free... I know a lot of you do it... but it isn't fun. I have been gluten free for 2 weeks and I feel a lot better.

When my daughter was diagnosed I was tested and of course it came back negative. I was also tested during my last pregnancy because the symptoms started then. It was also negative.

Angie Parde

jerseyangel Proficient
jerseyangel
Posted

Hi Angie--welcome to the board :D

I agree with you about going on the gluten-free diet now for your baby--you just might find that it relieves a lot of your symptoms, too!

Creative-Soul Newbie
Creative-Soul
Posted

Just popping in to join the welcoming committee :lol: ... glad that you've decided to end your lurking and join us!

missy'smom Collaborator
missy'smom
Posted
Oh! I am not... I am really bad... I haven't been to the doctor. I am horrible about that. BUT we have been to the doctors so much with our baby that I feel we live there. I really haven't had time. I get really bloated at night with pain, constipation and then diahrreah, gas, pooched out belly until it is all relieved. It seems I am living on Malox. I decided that until Logan is feeling better that I will go gluten free for his health and mine since I am nursing. I am always on a milk free diet because he is allergic to milk... not a fun diet let me tell you... gluten-free and milk free... I know a lot of you do it... but it isn't fun. I have been gluten free for 2 weeks and I feel a lot better.

When my daughter was diagnosed I was tested and of course it came back negative. I was also tested during my last pregnancy because the symptoms started then. It was also negative.

Angie Parde

I'm sorry. I hope you weren't offended but my comment. I was just relieved for you and hopeful in thinking that you might be getting answers soon. I know how hard it is to take care of an infant when you're chronically ill. Sorry that you're having such a hard time right now.

Guest aparde
Guest aparde
Posted
I'm sorry. I hope you weren't offended but my comment. I was just relieved for you and hopeful in thinking that you might be getting answers soon. I know how hard it is to take care of an infant when you're chronically ill. Sorry that you're having such a hard time right now.

Oh! NO! Not at all offended... I was just clarifing that I haven't been diagnosed yet and I am horrible about doctors! :)

kbtoyssni Contributor
kbtoyssni
Posted

Welcome!

happygirl Collaborator
happygirl
Posted

Angie,

Happy to have you on board! :)

I'm sure you've figured this out from your readings already, but even if you test negative, you can still (and, your baby) have problems with gluten. So even after testing, if you try the diet and see that you feel better on a gluten free diet....that is enough to know that you have a problem with gluten, whether it is Celiac or non-Celiac gluten intolerance. There are many people on this board who have never been officially diagnosed.

That being said---I certainly do recommend having the full Celiac blood panel run! But, in case its negative, there are many on here who are living proof that it has helped themselves/their kids....for whatever reason :). We are just thankful to know!

Laura

Guest aparde
Guest aparde
Posted
Angie,

Happy to have you on board! :)

I'm sure you've figured this out from your readings already, but even if you test negative, you can still (and, your baby) have problems with gluten. So even after testing, if you try the diet and see that you feel better on a gluten free diet....that is enough to know that you have a problem with gluten, whether it is Celiac or non-Celiac gluten intolerance. There are many people on this board who have never been officially diagnosed.

That being said---I certainly do recommend having the full Celiac blood panel run! But, in case its negative, there are many on here who are living proof that it has helped themselves/their kids....for whatever reason :). We are just thankful to know!

Laura

Thanks Laura!!!

I know... it is just getting to the doctor... :) UH! (Once my baby is better I promised my husband that I will get in there) When my daughter was diagnosed they told me that we all needed to get one done. I waited until I got pregnant again but my dad was diagnosed, and 2 of my cousins on my dad's side. So we have have a pretty big history on my side that there is a possiblity. I feel so much better, healthier etc just being gluten-free anyway.

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
      133,621
    • Most Online (within 30 mins)
      7,748
    vikkigoe
    Newest Member
    vikkigoe
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • 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.