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

Recommended Posts

Guest aparde

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

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

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

:)

Lisa Mentor

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

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

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

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

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

missy'smom Collaborator

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
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

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

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

missy'smom Collaborator
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
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

Welcome!

happygirl Collaborator

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
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.

  • 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. - Seaperky replied to lizzie42's topic in Traveling with Celiac Disease
      2

      Trip to Anaheim/Disney

    2. - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    4. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

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

    • Total Members
      133,349
    • Most Online (within 30 mins)
      7,748

    Sarah S
    Newest Member
    Sarah S
    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

    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
×
×
  • 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.