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

Starting The Gluten Free Journey

Jmedrew

Recommended Posts

Jmedrew Newbie
Jmedrew
Posted

Hi all,

After 7 years of dealing with bad stomach issues with my daughter, we have decided to cut out gluten and see if that is what is causing all her issues. She vomits all the times. She will sit on the toilet with diarrhea and throw up at the same time. Her stomach always hurts, always. She poops all day. The vomiting comes out of nowhere and when its done, it seems to be done for a bit, she is back to normal. Of course I have taken her to the Dr multiple times. I was told she was allergic to milk which we cut out for a year and then was told, no, it was a false reading. She has been tested for Celiac a few years back and it was negative. So I never pursued it. But after doing my research, I believe she just has a gluten intolerance, not the disease. It has gotten bad over the last 3 weeks or so, worse than it has ever been. After talking with a new friend whose niece went through the same thing and it was a gluten intolerance, I have decided this is what we will try for 30 days and see how it goes.

Over the past 3 weeks, I had changed to a whole wheat oatmeal bread and she also started taking flintstone vitamins (she is looking so pale) and after my revelation today I think those 2 things are what has made it worse. When I picked up the bottle of vitamins and it said contains wheat, I was shocked! Today was the first day we have cut it out and so far, no stomach aches. I know this is premature especially since we have had other diagnosis that "work" for a while then she gets sick again but no stomach aches after having them everyday over the past few weeks is a big deal!

We are military and in Germany so I am limited to what I have available to us. Tonight we are going to head to the commissary and see what they sell that is gluten free and I will go from there.

Thanks for listening!

Jamie

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Good luck to all of you. You may want to introduce yourself as "in Getmany" - I think there are a few posters here in Germany also. May be able to give you hints.

Skylark Collaborator
Skylark
Posted

I'm glad she is feeling better! Before you take her gluten-free, you might want to get her retested for celiac just in case. Celiac is progressive and she may test positive now.

Rice and potatoes are gluten-free and easy to find. There is an Italian brand called Sch

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Sometimes kids test negative because they don't produce a normal amount of IGA. It's hard to know if the original testing was accurate? It does sound like she's gluten intolerant at the very least?

I agree it might be a good idea to have her retested before going gluten-free. That's your call of course.

good luck to you all!

Roda Rising Star
Roda
Posted

I would get the celiac blood panel done again before you start the diet. My youngest son(in hindsite probably had an issue with gluten as a baby) had negative tests when he was 3.5 years old after my diagnosis. Because of symptoms he had developed, I had him retested when he was 5 almost 6 and his blood work was positive. He has been gluten free now for 14 months and is doing great.

He does have some dental enamal defects in his permanant molars(6 year molars) as a result of the undiagnosed celiac.

NHyogagirl Rookie
NHyogagirl
Posted

My daughter's Integrative doc (trained under Andrew Weil) said many many people including kids get back a FALSE negative. Glad you are taking this into your hands to start her gluten-free.

Skylark Collaborator
Skylark
Posted

My daughter's Integrative doc (trained under Andrew Weil) said many many people including kids get back a FALSE negative. Glad you are taking this into your hands to start her gluten-free.

I totally agree. Lots of people who can't tolerate gluten come up negative. my mom included. It's still worth testing because a positive test can really help with teachers and school cafeterias.

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

Celiac.com Sponsor (A8-M):


Jmedrew Newbie
Jmedrew
Posted
  • Author

Good luck to all of you. You may want to introduce yourself as "in Getmany" - I think there are a few posters here in Germany also. May be able to give you hints.

Oh, thanks! I didnt realize there was a germany board. :)

Jmedrew Newbie
Jmedrew
Posted
  • Author

I'm glad she is feeling better! Before you take her gluten-free, you might want to get her retested for celiac just in case. Celiac is progressive and she may test positive now.

Rice and potatoes are gluten-free and easy to find. There is an Italian brand called Sch

Jmedrew Newbie
Jmedrew
Posted
  • Author

Sometimes kids test negative because they don't produce a normal amount of IGA. It's hard to know if the original testing was accurate? It does sound like she's gluten intolerant at the very least?

I agree it might be a good idea to have her retested before going gluten-free. That's your call of course.

good luck to you all!

I really dont trust the first test after thinking it over. I mean this test was the same one that told me she was allergic to milk and she never was. :/. The reason I do think its just an intolerance was her vomiting was so sporatic. She would go months with nothing. And then weeks with doing it all the time. If it was celiacs wouldnt she be sicker than she was and have failure to thrive which she does not? Maybe I am wrong in that thinking. But whatever is exactly is it seems the no gluten is working great so far. 3 days of no diaherrea or vomiting!

Jmedrew Newbie
Jmedrew
Posted
  • Author

I would get the celiac blood panel done again before you start the diet. My youngest son(in hindsite probably had an issue with gluten as a baby) had negative tests when he was 3.5 years old after my diagnosis. Because of symptoms he had developed, I had him retested when he was 5 almost 6 and his blood work was positive. He has been gluten free now for 14 months and is doing great.

He does have some dental enamal defects in his permanant molars(6 year molars) as a result of the undiagnosed celiac.

I already started it thought and we are still waiting for the referral to see the specialist. I actually didnt know that one cant be tested accuratly if they are avoiding gluten. Anyhow, she has had no episodes of vomiting or anything since we started!

So glad to hear that your son is doing so well after going gluten free!

Jmedrew Newbie
Jmedrew
Posted
  • Author

My daughter's Integrative doc (trained under Andrew Weil) said many many people including kids get back a FALSE negative. Glad you are taking this into your hands to start her gluten-free.

Thank 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
      132,202
    • Most Online (within 30 mins)
      7,748
    PatBurnham
    Newest Member
    PatBurnham
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      CT with contrast.

      By Scott Adams · Posted

      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      New labs are now very elevated

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.