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. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    2. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    5. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

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

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    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

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.