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

More Tests....

Kujda

Recommended Posts

Kujda Rookie
Kujda
Posted

We are in the final stages of adoption with our son Abraham. Of course because he was in states custody all his health issues have to be worked out and there are definitely some! Received call today that our GI appointment is Aug 3rd. They will neither confirm nor deny that he has celiac or gluten allergy until more tests. He also suffers from seizures and we are going for an EEG in july. SOmetimes I feel as if our lives revolve around doctors appointments. Now they want ot test him for cystic fibrosis and I can't say no because we are mandated by the state that we follow all recomendations or it could put the finalization of our adoption in jeopardy. I know in my heart it is a gluten allergy but of course they need to poke and prod my son for an official diagnosis. He has been gluten free for 3 months and virtually all symptoms stopped except for when he accidentally gets glutened---i am still learning.

Has anyone had any experience with this and can they give a diagnosis based on diet change and results from that? They are talking about putting him back on gluten and doing another set of blood testsand abiopsy. This is going to break my heart. I feel like people don't believe me or think I am making it up. Besides everyone here I have never met anyone who understands what my family is going through.

Thanks for all the info and support! This has been and continues to be a WILD RIDE!!!!

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

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

Celiac Disease can cause seizures. It can also cause CF type symptoms: persistent diarrhea, bulky, foul smelling and greasy stools, pale stools, poor growth, abdominal swelling, gassiness, vomiting, dehydration, frequent respiratory infections, abdominal pain and discomfort, poor appetite, and malnutrition. I'm sure there are other symptoms that I'm missing. It's actually probably a good thing they're taking CF into account. Better that it be ruled out now, rather than a big surprise later. I hope that doesn't sound like I'm not being supportive. I just think I'd rather know up front about those things. Plus, the sweat test is a relatively easy test. No where near as invasive as the biopsy for Celiac. :) We all know how fun that is.

Have his seizures stopped since going on the gluten free diet? If so, perhaps you can point that out to the doctors. You may also want to take in some literature on Celiac and seizures. Some doctors just never get it. Are you allowed to choose what doctor you take him to? If so, I would research doctors in your area and surrounding areas to try to find one that specializes in Celiac.

I hope things go quickly for you and Abraham. Good luck!

rinne Apprentice
rinne
Posted

Sorry I can't be of any help, I just wanted to wish you and your family well. :)

Kujda Rookie
Kujda
Posted
  • Author
Celiac Disease can cause seizures. It can also cause CF type symptoms: persistent diarrhea, bulky, foul smelling and greasy stools, pale stools, poor growth, abdominal swelling, gassiness, vomiting, dehydration, frequent respiratory infections, abdominal pain and discomfort, poor appetite, and malnutrition. I'm sure there are other symptoms that I'm missing. It's actually probably a good thing they're taking CF into account. Better that it be ruled out now, rather than a big surprise later. I hope that doesn't sound like I'm not being supportive. I just think I'd rather know up front about those things. Plus, the sweat test is a relatively easy test. No where near as invasive as the biopsy for Celiac. :) We all know how fun that is.

Have his seizures stopped since going on the gluten free diet? If so, perhaps you can point that out to the doctors. You may also want to take in some literature on Celiac and seizures. Some doctors just never get it. Are you allowed to choose what doctor you take him to? If so, I would research doctors in your area and surrounding areas to try to find one that specializes in Celiac.

I hope things go quickly for you and Abraham. Good luck!

Thanks! We do not get to pick our doctor. Our peds has to refer us. We are going to see a GI at Vanderbilt- Dr Martinez. Of course if you know of anyone that specializes in this disease I would love a name and see if we could get a referral to them. Thanks so much and I would be lost without everyone here!

Kristin

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. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases...
    2. McKinleyWY
      - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast. All my life I have avoided bread and most products containing enriched flour as they contain yeast (when making the man made vitamins to add back in to the flour). Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat...
    3. trents
      - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you...
    4. Peace lily
      - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
    5. Teaganwhowantsanexpltion
      - Teaganwhowantsanexpltion replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,238
    • Most Online (within 30 mins)
      7,748
    tcpb
    Newest Member
    tcpb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
    • Teaganwhowantsanexpltion
      A little about me and my celiac disease

      By Teaganwhowantsanexpltion · Posted

      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore 
×
×
  • 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.