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
      131,606
    • Most Online (within 30 mins)
      7,748
    TGreen
    Newest Member
    TGreen
    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
      Potential celiac need advice

      By Scott Adams · Posted

      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.