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

4 Year Old Possible Celiac

AngelGarza

Recommended Posts

AngelGarza Newbie
AngelGarza
Posted

My four year old has been suffering from chronic constipation, abdominal pain, enormous bowel movements, and extreme irritability for over 2 years. Her doctor could care less. Last week her grandmother and Aunt were both diagnosed with celiac disease and they suggested I try going gluten free. After 3 days my caught has had two NORMAL bm's and is like a completely different child. I just called her dr to see about getting a blood test and she refuses to do it, so I'm switching to a new dr and it takes about a month for my insurance to make the change. Should I continue the gluten-free diet while I wait to have her seen? And should my other kids be tested? My 2 year old is extremely tiny for her age so I'm worried about her as well. I have soooo many questions so I thank u all in advance for your help!

Angel

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

Celiac.com Sponsor (A8-M):


alex11602 Collaborator
alex11602
Posted

For accurate testing you need to be consuming gluten and even then it is possible for a negative result. Also since you have family members who were diagnosed I would say for you and all your children to get tested.

Another thing is that since your daughter had positive results on the diet already after all testing is exhausted you may want to put her on a gluten free diet regardless of the test results.

Good luck with testing since it is my understanding that having positive test results can be beneficial when it comes to school and such. We don't have that problem since when I found out about celiac we decided to homeschool our children, but if you look through the parent of kids or babies section of the forum you may get a better idea of what testing involves and everything.

Good luck again.

AngelGarza Newbie
AngelGarza
Posted
  • Author

For accurate testing you need to be consuming gluten and even then it is possible for a negative result. Also since you have family members who were diagnosed I would say for you and all your children to get tested.

Another thing is that since your daughter had positive results on the diet already after all testing is exhausted you may want to put her on a gluten free diet regardless of the test results.

Good luck with testing since it is my understanding that having positive test results can be beneficial when it comes to school and such. We don't have that problem since when I found out about celiac we decided to homeschool our children, but if you look through the parent of kids or babies section of the forum you may get a better idea of what testing involves and everything.

Good luck again.

I was afraid she would have to go back on gluten. :( Atleast we will know for sure what's going on.

M0Mto3 Rookie
M0Mto3
Posted

Although it is tough to keep her on gluten, it is better to do it now. My little one is at the point that she may never get diagnosed. After a 2 month gluten challenge (which she did not tolerate) she still had negative bloodwork. Now, she is gluten free and healthy. I know that I would never put her back on it. She got a speck of gluten in her almond milk on Friday (carnation instant breakfast) and she isn't fully recovered, yet. Now I have to seek out a GI doc that might diagnose her without the bloodwork and endoscopy. She is still very young (17 months) so we have several years before we have to worry about needing the diagnosis for school.

AngelGarza Newbie
AngelGarza
Posted
  • Author

Although it is tough to keep her on gluten, it is better to do it now. My little one is at the point that she may never get diagnosed. After a 2 month gluten challenge (which she did not tolerate) she still had negative bloodwork. Now, she is gluten free and healthy. I know that I would never put her back on it. She got a speck of gluten in her almond milk on Friday (carnation instant breakfast) and she isn't fully recovered, yet. Now I have to seek out a GI doc that might diagnose her without the bloodwork and endoscopy. She is still very young (17 months) so we have several years before we have to worry about needing the diagnosis for school.

She is already having problems after one day of being back on gluten. I found a nurse practitioner who specializes in gastroenterology. She wants her back on gluten for a month and we'll go from there. We only have until august to get this diagnosed before she starts school. But I plan to use this month to eat up all of her favorite gluten filled crap. The poor girl is obsessed with Taco Bell :(

AngelGarza Newbie
AngelGarza
Posted
  • Author

Oh, another question....The family members who were recently diagnosed are my husbands fam. But the more I read the more this disease sounds like my childhood. I was constantly at the dr for stomach aches, I vomited all the time, was extremely skinny with a distended belly (my cousins all used to call me the ethiopian kid), and always ended up in the er on thanksgiving. My drs all attributed my issues to being anemic, then as I got older they saud I was bulemic. My father has always had stomach issues as well. He has had bleeding ulcers a bunch of times. Abd his mother had 7 siblings who all died in their 40's and 50's from stomach cancer. Should I get tested as well?

alex11602 Collaborator
alex11602
Posted

I definitely would if I was you. I certainly couldn't hurt anything.

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

Celiac.com Sponsor (A8-M):


eluvsphish Newbie
eluvsphish
Posted

My doctor is also not understanding. I'm skipping a new pediatrician and going right to a gastro for my son. In the meantime, I just sent away for genetic testing through Enterolab. It was almost $200, but worth the peace of mind. The way I feel is that if he is carrying a gene, then he is going to have the disorder. (And since I just found out that I carry 2 genes too, then he will have at least one. But doctors respect you more when you have genetic proof too!)

But yes, I agree with others on this forum, keep the gluten for now so that you can have the blood test. But, don't give up if it's negative. My son's was negative and I don't believe it at all. He has been waaaaaay too much better since going gluten-free.

maramelia Newbie
maramelia
Posted

My doctor is also not understanding. I'm skipping a new pediatrician and going right to a gastro for my son. In the meantime, I just sent away for genetic testing through Enterolab. It was almost $200, but worth the peace of mind. The way I feel is that if he is carrying a gene, then he is going to have the disorder. (And since I just found out that I carry 2 genes too, then he will have at least one. But doctors respect you more when you have genetic proof too!)

But yes, I agree with others on this forum, keep the gluten for now so that you can have the blood test. But, don't give up if it's negative. My son's was negative and I don't believe it at all. He has been waaaaaay too much better since going gluten-free.

people, the genetic test is not everything like many and literature always says... sometimes it is negative, and the person do not have celiac disease, but some type of intolerance, sensibility, or whatever you want to call this thing...

my son example: short stature, few GI symptoms, always very small for his age, now 6yrs, wears 4T-5T clothes, and he has a negative EMA / a mild positive TTG and Marsh I = positive biopsy, and his HLA tests were surprisely negative !!! and he is improving (at least with GI symptoms...). my husband is 36yrs, always with an IBS diagnosis, and after we started the GDF because of our oldest boy (the 6yrs one), he dramaticaly improved of his diarhea symptoms... and before entering in GFD my husband did the blood exams, --- all negative!!!!! he didnt do the biopsy, and now, after eating no gluten, he told me: "i dont want to go back to that life!!!"

last saturday, we went to a japanese restaurant, and he ate (by mistake, he forgot this) a shimeji with probable gluten-shoyo... wow!!!! green diarrhea back! incredible, he was free of it after 3 weeks of gluten free diet... just because some small amounts of shoyo in a shimeji plate --- it was inclredible...

I say to you, its better mantain gluten diet for all that are possible to be celiacs, at least until the biopsy... because after staying with gluten free diet, then to come back to gluten is too bad, and you all will, never have an official diagnosis... unless you promise you will go back do gluten... (after get out of it, if you improve, its hard, very hard..., specially to our children...).

finally, i resume: keep on gluten diet, hurry to docs, do the blood exams and biopsies quickly, and then go definitively to GFD...

"when you taste caviar, its hard to go back to the daily common "butter"...:)))

good luck for all.

TBelle Newbie
TBelle
Posted

Just a note about the family question. My 3 children have been diagnosed with celiac disease so my husband and I both got gene tested to find out what side of the family it comes from (I have been told it's very unusual for 3 of my children to have celiac disease and the only one who doesnt yet is an ID twin so she has the gene) I just got the results back and my husband and I both have the same celiac disease gene so it could come from both sides of the family. It would be wise to get everyone in the family tested. Good Luck with it all

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. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,471
    • Most Online (within 30 mins)
      7,748
    Lynda Gibbons
    Newest Member
    Lynda Gibbons
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.