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

Wanted To Introduce Myself

mommy2twoboys

Recommended Posts

mommy2twoboys Rookie
mommy2twoboys
Posted

Hi everyone,

I am kind of new here. Actually I have been reading the wealth of information on this site for a few months now, and I am so grateful for you all. I don't think I would have made it through the past few months without you all. It's nice to have a place to come where most of the questions I have are already being asked.

I just wanted to introduce myself and share my story.

My 2 year old baby boy was a very sick baby for a very long time. He had this awful diarrhea for over a year, bad diaper rash, a big belly, he was losing weight and not growing at all. He was always tired and never played. The Doctors kept saying his diarrhea was from all the antibiotics he was on. From very early on he had trouble with Croup, Asthma, Bronchitis, Pneumonia, he is hearing impaired (born without ear canals) so after many trips to the doctor, we begged them to run tests. They tested his stool...everything was fine. They suggested toddler diarrhea, and said feed him lots of fatty foods and so on. They said if he doesn't gain any weight in 3 weeks we will test him for Celiac. I had never heard of this. I decided we couldn't wait 3 weeks and they tested him the very next day. A few weeks later we got the call and he was positive (blood work) we meet with a Ped GI and they said his numbers where so high that they didn't need to do a biopsy. We started a gluten free diet that day. My goodness what a different child!!!! He plays, he laughs, he is talking, no more diarrhea, and no more big belly. He has gained 6 pounds since going on the diet and grown 1 inch. It is truly amazing to me. He is finally healthy and I have my precious little boy back!!! :) He has been gluten free since the end of September 2006.

I still find it very challenging. We are almost a gluten free household. Working on hubby and my 5 year old. I was tested and my blood work came back negative. I am going to have our 5 year old tested. He doesn't seem to have any problems but is very very thin!! Again it has made such a difference in the baby...and you can tell when he has gotten some gluten. He becomes very sick and very irritable almost immediately.

Well I did have a question...he is always hungry...he eats eats eats...doesn't seem to get full...does anyone else have this issue?

Sorry if this is so long!! Again thank you all for all your wonderful advice!! This is truly a great place to be!!!

Suzanne

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

Celiac.com Sponsor (A8-M):


JayT Rookie
JayT
Posted

Good to hear he is doing better. I am new to this site too but have been Gluten Free for over 10 years, so feel free to visit me for questions...but then again, there are about 7000 other people on this site always willing to help too. :-)

Canadian Karen Community Regular
Canadian Karen
Posted

Wow! What a wonderful story! That just made my day! I love to hear success stories like this one!

Don't have much to add, since it is me who has celiac, not my children, but wanted to welcome you to the board and I'm glad you jumped in and decided to post! There's a great bunch of really caring, knowledgeable people on here.....

Hugs.

Karen

Guhlia Rising Star
Guhlia
Posted

Welcome welcome welcome! It's really nice to hear others' stories. If you go to get your other son tested, keep in mind that if he's already mostly gluten free that it will likely show negative results. You have to be eating quite a bit of gluten, I believe, for the test to come up positive.

As for your little Celiac's hunger, perhaps his intestines aren't completely healed yet and that's why he's still very hungry. Also, toddlers that age are generally little eating monsters if you can get them to slow down long enough to eat. I would mention it to the doctor at your next check up, but it seems to me that this is probably relatively normal. Especially since he was underweight and not growing before diagnosis. His body is probably struggling to make up lost ground.

Welcome also to JayT!

FeedIndy Contributor
FeedIndy
Posted

Congrats on finding the solution to your little one's problems. Constant hunger is my middle child's prominent symptom. I didn't think much of it until she went gluten free and suddenly ate a normal amount of meals. Now when she get accidentally glutened she can't seem to stop eating the entire next day.

TCA Contributor
TCA
Posted

I'm so glad to hear your success story. Most of us have similar ones and know that feeling of complete relief to finally have an answer in hand! My son ate tons for a while, but now it kinda comes and goes. He's been gluten-free for a year now. I wouldn't worry. Kids eat when they need to, usually. Unlike we adults who eat out of boredome sometimes! We finally just went gluten-free here at home b/c the cc issues were a nightmare with 2 kids. You may find doing that might help with his hunger. There's a list in my sig line about getting started. You've probably already gotten all that info, but wanted to pass it on just in case.

Welcome!

happygirl Collaborator
happygirl
Posted

Hey Suzanne,

Welcome to the board....we are happy that you have been reading and decided this was a good place to "be!"

I think you'll find a lot of knowledgable people on here, and will get great support. You are right, the diet is challenging, but luckily, it *does* get easier with time. I refer to it as a steep learning curve, but then once you get it, you get it. There is maintenance, and ingredients/labeling laws change every so often and you must keep up on it, but the beginning is by far he hardest. (Not fun though, when you are overwhelmed).

Your kids are lucky to have a mom like you, esp to demand to be tested right away so you can "move on" to getting your son better!

All Celiac experts recommend that ALL first degree relatives are tested (full blood panel) for Celiac. You, husband, and 5 year old--As it has a genetic disorder, it could be any of you that have it. It could be none. Also, you don't have to have symptoms to be a Celiac; there are asymptomatic individuals (referred to as "silent Celiacs") that have increased bloodwork and total villous atrophy in the biopsy. It is amazing that two people can have this disease, and yet have such different symptoms. So, even if you all test negative, it is recommended to be periodically tested, as you could still "get" it (many people are diagnosed with celiac disease as adults, that didn't have it as a kid)...and definitely be tested if there are any symptoms.

Best of luck, and let us know what we can do to help!

Laura

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

Celiac.com Sponsor (A8-M):


dlp252 Apprentice
dlp252
Posted

Hello and welcome!!!

blueeyedmanda Community Regular
blueeyedmanda
Posted

Hi and Welcome,

I am glad to hear your baby is doing so much better. It sounds like he has come a long way in just a few short months. Congratulations!!!!!

Juliet Newbie
Juliet
Posted

My son was also diagnosed at two, and once we started giving him gluten free food he went from barely eating to eat a ton. He didn't start tapering off (but only barely - he continued to eat more than he did before he was diagnosed) until almost 6 months later. And during that time he went from 25th percentile in weight and 40th percentile in height to 75th percentile in weight and 90th percentile in height (his dad is 6'2" and I'm 5'9", so being that small didn't seem to fit the profile). I think his body was just making sure he had enough fuel to grow that much. He also started building up his muscle mass which he lost when he was getting really sick, and muscles burn more calories. Within 6 months, his numbers were all within the normal range, too, so I don't think it had as much to do with damaged intestines as just a boy trying to get back to where he should be :) I'm glad he's doing so well!

mommy2twoboys Rookie
mommy2twoboys
Posted
  • Author

Thank you all for your warm welcome!!!

I am learning so much from you all. Being new to this has been a bit overwhelming but because of all of you and this great site it has made things alot easier. I hope that through this process my family will grow and hopefully I will be able to help someone else out there. I am very blessed that we have an answer to all his problems and I am greatful that we as a family will be healthier for it.

I hope you all have a wonderful day...and pray for those of you that are caught in this crazy weather...I hope you are staying warm!!

squirt2476 Rookie
squirt2476
Posted

Hi-

My 2 year old son was also recently diagnosed, but I am having the opposite problem with him in regards to eating. He still does not really want to eat anything. It has been two weeks today since the biopsy and going gluten free, and so far we have seen very little change in him. He still has no appetite, no energy, and is just not himself. We'll see little glimpses of our old Matty, not not too often. Did anybody else have this situation? It's very frustrating because he is still so skinny and we want him to start eating, but I think he still has a negative association with food. If anyone with a similar situation can share how long it took for their little one to start feeling better it would be great. Thanks!

Keri

mommy2twoboys Rookie
mommy2twoboys
Posted
  • Author
Hi-

My 2 year old son was also recently diagnosed, but I am having the opposite problem with him in regards to eating. He still does not really want to eat anything. It has been two weeks today since the biopsy and going gluten free, and so far we have seen very little change in him. He still has no appetite, no energy, and is just not himself. We'll see little glimpses of our old Matty, not not too often. Did anybody else have this situation? It's very frustrating because he is still so skinny and we want him to start eating, but I think he still has a negative association with food. If anyone with a similar situation can share how long it took for their little one to start feeling better it would be great. Thanks!

Keri

Keri,

I hope things get better soon!! In the begining I remember going through my kitchen and throwing everything out and running to the grocery store in search of gluten free foods that a toddler would eat (most are picky) :) the first time I was in the store for almost 3 hours...in tears the whole time. I pretty much at first gave him things like gluten free pancakes and he eats lots of yogurt and pudding, string chesse and of course his favorite french fries. He also enjoys the gluten free cerals dry just like Cheerios. Since we don't eat fast food anymore our Sat. lunch is fast food at home with chesseburgers, chicken nuggets and french fries...(all gluten free) I even give the kids a treat like they would get in a Happy Meal. I know it is really hard. I also had to take him off regular milk and now he drinks lactose free and seems to be better with that.I hope your little Matty starts feeling better real soon. I am sure there are lots of people on here that will have lots of good advice for you.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,635
    • Most Online (within 30 mins)
      7,748
    TomA
    Newest Member
    TomA
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Buckwheat

      By trents · Posted

      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Buckwheat

      By Inkie · Posted

      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Frequent nausea after gluten-free diet

      By Wheatwacked · Posted

      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • 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.