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

Diagnosing A Sibling

Amie

Recommended Posts

Amie Newbie
Amie
Posted

Sorry.. this will look like a repeat post. I tried to edit my last one to include another question and I deleted it.. :) Newbie!!!

My now 10yo son was diagnosed with Celiac at 4.5y. He has been Gluten free since. Before diagnosis, He was extremely symptomatic... he had fallen off the growth chart, had weight loss, diahrea, projectile vomitting, migraines, leg cramps, etc.etc.etc... He has been doing great since the changes.

I had my 4yo tested last summer because he was getting alot of stomach aches, and he seemed to have diahrhea alot. Also, issues with anxiety. I was surprised when it came back negative. The blood work was sent to Mayo clinic, and I know they are considered reliable for Celiac testing. Since then he has been to his 5yo check -up and he has not grown.. weight is the same, but he still has diarhea alternating with pasty stools and occasional headaches. His also seems to struggle with his behavior. At times he is ahead of his age in behavior and other times he will have a couple days where he seems to have a very hard time controlling his emotions. He can get sad easily and seems very anxious. I have since learned that Anxiety is a symptom of celiac, and I am curious if anyone else has had any experience with this related to Celiac and if so, did the issues get better on a gluten-free diet? Also, is there anything else connected to Celic given that we have it in the family that I should be looking into ? Any other food sensitivites, etc that maybe causing these issues?

His doctor agreed to have him tested again for Celiac, and we are awaiting the results. Given that we will be using just the local lab at our childrens hospital, I am wondering how reliable the results will be. (They do not send out to Mayo clinic) Is it imparitive that I retest him if it is negatvie and send them out to promethius(which I have since learned they can do? Can I trust the results if they are negative? Also- I have also recently learned that if you have a child with Celiac ond others show symptoms, you should retest them every couple of months? Has anyone else done this and found that they tested negative one month and then positive two months later? just curious.

Any advice on these issues from those who have btdt would be much appreciated!!

Thanks for listening!

:)

Amie

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

Celiac.com Sponsor (A8-M):


Amie Newbie
Amie
Posted
  • Author

Sorry.. this will look like a repeat post. I tried to edit my last one to include another question and I deleted it.. Newbie!!!

My now 10yo son was diagnosed with Celiac at 4.5y. He has been Gluten free since. Before diagnosis, He was extremely symptomatic... he had fallen off the growth chart, had weight loss, diahrea, projectile vomitting, migraines, leg cramps, etc.etc.etc... He has been doing great since the changes.

I had my 4yo tested last summer because he was getting alot of stomach aches, and he seemed to have diahrhea alot. Also, issues with anxiety. I was surprised when it came back negative. The blood work was sent to Mayo clinic, and I know they are considered reliable for Celiac testing. Since then he has been to his 5yo check -up and he has not grown.. weight is the same, but he still has diarhea alternating with pasty stools and occasional headaches. His also seems to struggle with his behavior. At times he is ahead of his age in behavior and other times he will have a couple days where he seems to have a very hard time controlling his emotions. He can get sad easily and seems very anxious. I have since learned that Anxiety is a symptom of celiac, and I am curious if anyone else has had any experience with this related to Celiac and if so, did the issues get better on a gluten-free diet? Also, is there anything else connected to Celic given that we have it in the family that I should be looking into ? Any other food sensitivites, etc that maybe causing these issues?

His doctor agreed to have him tested again for Celiac, and we are awaiting the results. Given that we will be using just the local lab at our childrens hospital, I am wondering how reliable the results will be. (They do not send out to Mayo clinic) Is it imparitive that I retest him if it is negatvie and send them out to promethius(which I have since learned they can do? Can I trust the results if they are negative? Also- I have also recently learned that if you have a child with Celiac ond others show symptoms, you should retest them every couple of months? Has anyone else done this and found that they tested negative one month and then positive two months later? just curious.

Any advice on these issues from those who have btdt would be much appreciated!!

Thanks for listening!

Amie

Nancym Enthusiast
Nancym
Posted

Given the high probability that there exists a non-celiac gluten sensitivity, something many of us have figured out even if our doctor's haven't, why not just try the 2nd child on a gluten free diet and see if it relieves their symptoms?

I think there's a lot to be said for the entire family going gluten-free to support the family member with a gluten sensitivity. Less risk of cross-contamination, fewer meals to cook, plus you're not making the celiac feel like they're weird and out-of-place. And finally, you and your husband passed on the genes, it is possible that you could benefit from the diet as well.

Ursa Major Collaborator
Ursa Major
Posted

Oops, sorry about that.............Amie, you submitted this post twice, and to get rid of the duplicate, I merged the posts, not knowing it would then also duplicate your original in this post (the last time I tried this, it didn't do that, just put any responses in.......but there were no responses yet). I am still new as a moderator.

The problem with little children is often, that their bloodwork comes back negative initially, and turns positive several years later, after more damage has been done by the gluten. A biopsy of the small intestine could find damage, even when the bloodwork is negative.

I agree with Nancy, it is likely that your younger son either has celiac disease or is gluten intolerant. The way to find out is to have him eat gluten-free too, and to see what happens.

Tony'sMom Rookie
Tony'sMom
Posted

Hi Amie.

My son was diagnosed 3 years ago. At that time the whole family was tested and came back negative. We were all tested again this past December, again with negative results.

I just had my dd tested for the 3rd time Monday. She's starting to have some issues that I felt resembled Celiac- stomach pains, constipation, lack of growth, no appetite,etc. There are other symptoms that she has but they also could be related to her Cerebral Palsy.

I had asked about sibling testing not too long ago and the answers I got seemed to indicate testing every 3-5 years.

If you think he would benefit from the gluten-free diet than give it a try. It certainly won't hurt him :)

I hope you get your test results soon.

francelajoie Explorer
francelajoie
Posted

I don't know if anxiety is a symptom but I certainly have it :(

I bought some "nerve tonic" cause my heart was just beating so fast I couldn't sit for 2 seconds. I'm better now but I think that's where my celiac started. I'm a pack of nerves I tell ya. Thank goodness for red wine :D

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. Jay Heying
      - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    2. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    3. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    4. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    5. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,883
    • Most Online (within 30 mins)
      7,748
    ammocat
    Newest Member
    ammocat
    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

    • Jay Heying
      Celiac friendly probiotics

      By Jay Heying · Posted

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
×
×
  • 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.