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Guest aparde

By Guest aparde
in Coping with Celiac Disease

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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!!!

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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

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Slackermommy Rookie
Slackermommy
Posted

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

:)

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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.

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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. :):)

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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.

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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.

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Guest aparde
Guest aparde
Posted

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

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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.

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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

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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!

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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!

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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.

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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! :)

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kbtoyssni Contributor
kbtoyssni
Posted

Welcome!

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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

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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.

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      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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