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. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      8

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      Thanks this is helpful!
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    3. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    4. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    5. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,915
    • Most Online (within 30 mins)
      7,748
    DRIZZE
    Newest Member
    DRIZZE
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.