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

Wondering If Dd Could Have celiac disease


angxmas

Recommended Posts

angxmas Newbie

Hi. I've been wondering if my daughter (and myself for that matter) could have celiac. She was a colicy baby and had problems with thrush, as did I. She is 5 now and just doesn't have the energy that a normal 5 yr old, would. Here's a rundown of her symptoms.

Complains often of tummy aches

Gassy

Seems to be bloated at times, especially after eating

Tired all the time, seems she can't get enough sleep

Circles under her eyes

Seasonal allergies

Sinus drainage

Muscle aches (I have fibro and wonder if she may also)

Can be moody and irritable at times

Has had problems with eczema and dry skin since she was a baby

Seems like there are more. But those are the main ones. Just wondering what you all think. I'm looking into the enterolab testing for us both. Any advice on what tests are best. Money is tight.

TIA for your help!

Angela


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



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice
Hi. I've been wondering if my daughter (and myself for that matter) could have celiac. She was a colicy baby and had problems with thrush, as did I. She is 5 now and just doesn't have the energy that a normal 5 yr old, would. Here's a rundown of her symptoms.

Complains often of tummy aches

Gassy

Seems to be bloated at times, especially after eating

Tired all the time, seems she can't get enough sleep

Circles under her eyes

Seasonal allergies

Sinus drainage

Muscle aches (I have fibro and wonder if she may also)

Can be moody and irritable at times

Has had problems with eczema and dry skin since she was a baby

Seems like there are more. But those are the main ones. Just wondering what you all think. I'm looking into the enterolab testing for us both. Any advice on what tests are best. Money is tight.

TIA for your help!

Angela

Very likely. Here's an idea - why don't you both go gluten free for a week? See what happens. The problem with tests is that there are lots of false negatives, especially in children because their immune system may not be fully developed. You both could eat all the meats and fruits and veggies you wanted. You may want to limit dairy as dairy intolerance is very common with untreated celiac. If you don't feel any better w/o gluten, there may be other avenues to explore, but I'd try that one first.

Keep us posted!

Annette

watkinson Apprentice

I had some of the classic symptoms of celiac, like liquid diareah, bone pain, terrible joint pain, feelings like certain bones were broken, horrible muscle pain (yes...fibromyalgia) and cramping of the legs, peripheral neuropothy, sleeplessness, always tired, depression from chronic pain, ect. and some not so classic like, hypothyroidism. However, my daughters symptoms weren't all the same as mine. She was gassy and bloated, constipated, always sleeping, lacking energy, small in stature, but also very achy. Celiac disease can manifest in tons of different ways, some not even with digestion but more with brain problems like,

too much sleep or can't sleep at all , can't concentrate, ADD, or ADHD, depression, bipolar disorder, autism, even schitzophrenia (sp).

I definitley agree with Annette, try going gluten-free and see if you feel better. It took me over 20 years and many, many different doctors <_< to finally find out I was a Celiac. I was so sick and in so much pain at that point that there were times I would pray to just die. As soon as I went gluten-free I felt better in 1 day. By the end of the week I was tons better. My daughter is the same way. :D After about 2 years now we feel as though we are pretty much "healed" and normal unless we accidentally get glutened. If you feel better you have your answer.

You should get your daughter used to be gluten-free as young as you can so that she can learn how to be gluten-free, and cope with eating differently. Plus it will greatly affect her health if she is a celiac and remains untreated.

Good luck, I hope you will feel better, Wendy :)

Just to add one more thing....I also started getting excema and a burning, stingy rash on my neck, chest, and upper arms, around the age of 19. I went to many dermatologists over the years and none had an answer. Since going gluten-free, I no longer have any skin problems, gone within about 1 week of being gluten-free. I suffered for over 20 years with my skin like that and now my skin is perfect, looks like baby skin! :)

Wendy :D

angxmas Newbie

Thanks for your help. A couple more questions. My dd still has bathroom accidents. No bm accidents anymore, thank goodness. But at times she doesn't make it to the bathroom before she starts to go potty. It seems that she just doesn't realize that she needs to go at times. We only have state aid ins on her and so I haven't taken her to the dr about it. So, I'm not sure what's causing it. Just wondering if there's any chance it could be gluten related?

And my second question. What are good gluten-free snacks? My pantry is full of gluten snacks and I need to replace them.

Angela

nettiebeads Apprentice

Could be a lot of reasons for your dd not making it to the bathroom. Could she have a mild UTI? The malabsorption from celiac can cause lots of different problems. Sometimes I have problems too. The urge is just so strong that I can't quite make it to the b'room in time. Frustrating. Anyhow, the flours are a little pricey to make your own treats so I would buy a little at a time until you get a good variety and then you can make cookies and such. But my kids (non celiac) loved apples after school with fruit dip:

1 8-oz package cream cheese

1/2 cup brown sugar

1/4 cup sugar

1 1/2 tsp vanilla

Blend together, chill and serve.

Somewhere on previous posts there are links to the Delphi lists of regular foods that are gluten-free.

oh, quesidilla made with corn tortillas are good too.

In time you will learn to read recipies and just think substitutions like rice for pasta and such. BTW, I never had an "official" test like bloodwork and biopsy. My good ole gp had me cut out gluten when I went to him about having diarrhea for 6 weeks. The D stopped, viola ! Celiac. It's called the diet challenge and is a valid diagnostic tool. None of my other doctors since then have questioned the original dx. Especially when I tell them that if I accidentally eat gluten, I KNOW IT!

Annette

marfa62 Newbie
Thanks for your help. A couple more questions. My dd still has bathroom accidents. No bm accidents anymore, thank goodness. But at times she doesn't make it to the bathroom before she starts to go potty. It seems that she just doesn't realize that she needs to go at times. We only have state aid ins on her and so I haven't taken her to the dr about it. So, I'm not sure what's causing it. Just wondering if there's any chance it could be gluten related?

And my second question. What are good gluten-free snacks? My pantry is full of gluten snacks and I need to replace them.

Angela

the stool could be so runny that it doesn't trigger the muscles that control the movement. A diet change will tell you.According to my GI MD, you must have mass to get muscke movement.

Snacks, we go to Costoco and get dried cranberries,(craisins), trail mix with dried fruits. mango strips. my kids will fight over them. rice cakes with peanut butter and jelly. Rice krispie bars. ( we make them with raisins and other dried fruits) Others are fresh fruit cut up with a dab of chocolate sauce which we make with BAKERS chocolate. Or fruit with yogurt.

My favorite is on the side of the tapioca box. It is fruit tapioca. They suggest apple, I use orange juice and thrown in the rotten fruit of the day. the stuff they wouldn't eat, I hide in the fruit tapioca. We can have real cool whip but not the calorie free.

chrissy Collaborator

sometimes kids that age will get so involved in their play that they don't want to leave---even to go potty, and will just wait until they can't hold it to decide to go.

christine


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



Celiac.com Sponsor (A8-M):



Guest nini

I agree with the suggestion that you guys try the gluten-free diet for a while and see if it makes a difference... if money is tight and insurance is an issue, a positive dietary response is the most valid diagnostic tool anyway and it's cheaper and you can monitor it yourself!

My daughter is five and has been gluten-free since she was three. She loves to eat Fruit Roll Ups, Fresh Fruit and Veggies, Yogurt (Stoneyfield Farms French Vanilla), EnviroKids Cereal bars (like rice crispies but in Peanut Butter, Berry, and Chocolate) Cheetos, Fritos, Funyons, Bologna (Oscar Meyers is gluten-free) and Cheese roll ups, Hot dogs wrapped in Mission Corn Tortilla's with cheese, Nachos, Popcorn, Real Foods Corn Thins, Apple sauce, fruit cups... I could go on and on! LOL...

feel free to pm me or e-mail me if you want more menu ideas. I do have a newbie survival kit that is chock full of files with menu's for restaurants, shopping lists, naturally gluten-free menu ideas, school supplies... if you would like it e-mail me at nisla@comcast.net

angxmas Newbie

Thanks so much for all the help and suggestions! I informed dd, today, that we would be probably eating mostly meat, vegies, and fruit for a while. She actually got pretty excited! lol I've got strange kids. They've always loved stuff that's good for them. ;)

I think I will try the diet for a week or two. I do want some kind of confirmation in writing, though. I really think it comes from my dad's side. He's also got fibro and I know the diet would do wonders for him. But he won't even try it unless I've got celiac in writing and he has to get tested himself.

I don't think that dd's just getting so involved in things that she doesn't feel the need to go is the problem. I can see at times that she seems to need to go. Or will just ask her just to see. She, at times, has said no and I'll have her go anyway and she'll tell me she didn't know. My other two didn't have the same problem so I'm kind of at a loss. And just hoping that it's resolved before she starts K in the fall.

Anyway, thanks again. All the help is much appreciated!

Oh, and Nini, I already got the newbie kit from you. ;) Thanks

Guest Robbin

Angela, Please have her checked ASAP for juvenile diabetes. I know I harp on this on here alot, but my oldest child suffered so much and still suffers with diabetes as a result, I am sure of undiagnosed celiac. The bathroom accidents really worry me, since this is a sign. If she is excessively thirsty, not hungry at meals-but wants sweets, is tired or conversely hyper at times, getting up alot to urinate during the night, stomach aches, leg pain, weight loss ---these are all the symptoms my son had. Take care and keep us posted.

angxmas Newbie

So, you suspect both diabetes and celiac? There is diabetes on both sides. For some reason it hadn't crossed my mind, though. Both g-pas have it, an uncle, a great g-pa. She does crave sweets, chocolate, specifically. I wouldn't say she is excessively thirsty. She eats very well at meals. She does have mood swings at times and stays tired to some extent. Tummy aches, leg pain, no weight loss. She's not over weight by any means, but is the stoutest of the 3 of my kids. Thanks so much for the suggestion. For some reason it's not something I had suspected. I will definitely keep you all informed!

nettiebeads Apprentice
Snacks, we go to Costoco and get dried cranberries,(craisins), trail mix with dried fruits. mango strips. my kids will fight over them. rice cakes with peanut butter and jelly. Rice krispie bars. ( we make them with raisins and other dried fruits) Others are fresh fruit cut up with a dab of chocolate sauce which we make with BAKERS chocolate. Or fruit with yogurt.

My favorite is on the side of the tapioca box. It is fruit tapioca. They suggest apple, I use orange juice and thrown in the rotten fruit of the day. the stuff they wouldn't eat, I hide in the fruit tapioca. We can have real cool whip but not the calorie free.

FYI-I think Quaker rice cake are heavily cross contaminated, and last time I looked Rice crispies were flavored with malt so they aren't gluten-free.

Guest nini
Oh, and Nini, I already got the newbie kit from you. ;) Thanks

oh good... I've sent it out to sooooo many people I can't keep track! I hope you are finding it useful.

angxmas Newbie

Nini, I haven't gotten much time to sit and look at all the kit has in it. But I can't get into the "50 things to eat now" folder. DH looke at it and said he didn't think we could open it for some reason.

I have an appt with dd's dr on Friday. So, I'll let you all know how it goes.

Angela

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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,211
    • Most Online (within 30 mins)
      7,748

    MogwaiStripe
    Newest Member
    MogwaiStripe
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.