Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Not Quite G/f, Now What?


pressgirl40

Recommended Posts

pressgirl40 Newbie

My dad was dx with celiac about 6 years ago. After checking w/ my docs back then with no real symptoms, both my gp and my ob said no need to test. Now I know better. After more recent research, I found that I had problems w/ constipation, stomach aches as a child. At the time diagnosed as lactose intolerance. About 15 years ago I had a bout of what dr.s called chronic fatigue. I would go straight for blood test and biopsy now, but here's the rub: i have been nearly gluten free for five years. That's when I decided to drop 20 lbs (post baby). The diet emphasized fruits, vegs, proteins and some whole grains. I eat oatmeal a couple times a week, haven't had bread in months, and when I did eat bread it was only five slices a week maybe. I get incidental gluten in soy sauce etc.

I spoke to Dr. Fasano (not my doc, just had the opportunity to interview him for work) he said he suspected both a blood test and biopsy would come back negative. He suggested eating more gluten and getting blood and biopsy. But reading these posts and knowing how I would rather not eat that much bread - I'm not expecting belly aches, more fear of gaining that 20 back and I really don't miss it. I was considering simply getting the genetic test and if I have the genes, I clean out gluten altogether. But I want to know something to better inform myself about my son....

He's 6 years old and has a lot of gas. Began complaining of belly aches about a month ago. He's still fine on growth charts. Unlike me, he eats loads of gluten. Blood test? What about that company that does a test with just a finger prick? (it was extremely difficult to draw blood last time he was sick). Any advice is welcome.


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

Hi

I can tell you that my four year old grandson was of normal weight & height but everything he put in his mouth seemed to bother him. He would throw up milk minutes after drinking it : it would be curdled in a matter of minutes. Or else it came out the other end, other foods did the same thing to him. Finally we had to do a endo & a colonoscopy on him at four. He's five now & doing much better but still gets glutened every once in awhile by some do good teacher who thinks we are not being realistic in feeding him....We had to go to the church board & to the school board to stop it.He knows what he can & can't have but when adults push stuff onto him he then says he eats it cause they said it was okay. I just want to flip out on them.... Oh well enough of my ranting.....

I would get him check out before damage has a change to make him real sick.....

good luck

pressgirl40 Newbie
Hi

I can tell you that my four year old grandson was of normal weight & height but everything he put in his mouth seemed to bother him. He would throw up milk minutes after drinking it : it would be curdled in a matter of minutes. Or else it came out the other end, other foods did the same thing to him. Finally we had to do a endo & a colonoscopy on him at four. He's five now & doing much better but still gets glutened every once in awhile by some do good teacher who thinks we are not being realistic in feeding him....We had to go to the church board & to the school board to stop it.He knows what he can & can't have but when adults push stuff onto him he then says he eats it cause they said it was okay. I just want to flip out on them.... Oh well enough of my ranting.....

I would get him check out before damage has a change to make him real sick.....

good luck

There is no doubt I will be having him checked out. But I'm wondering how best to do it. I see the traditional blood test to biopsy pattern, but I also read the paper by Dr. Fine and wonder if the stool test for sensitivity would be less invasive and equally informative.

mamaw Community Regular

I think many have done both ways, alot of people on here have used Dr. Fine with good results I think.I believe that is a choice you will have to make on your own. I know we were so scared to put our little one through that but he did wonderful,we also did the routine celiac bloodwork and the did DNA before we stopped.My daughter just wanted to cover all basis maybe overkill because we new this would be a life time diet for him.... We feel when given such a precious gift of him we just didn't want to miss anything or maybe something worse...

good luck with whatever route you take..

mamaw

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,509
    • Most Online (within 30 mins)
      7,748

    Mr-Collateral531
    Newest Member
    Mr-Collateral531
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Your doctor may or may not be well-informed about the issue you raise so I would not agree that he/she would necessarily be the best person to rely on for a good answer. The question actually raises two issues.  The first issue has to do with cross contamination and individual sensitivity as dublin55 alluded to. Oats and wheat are both cereal grains that are typically grown in the same areas, transported in the same trucks, stored in the same silos and processed on the same equipment. So, there is usually significant CC (Cross Contamination). With gluten free oats, there is some effort to separate these processes that would otherwise cause significant CC and "gluten free" oats should meet the FDA requirement of not exceeding 20 ppm of gluten. But this 22 ppm standard is not strict enough for more sensitive celiacs. "Certified gluten free" oats (and other food products are held to a stricter standard, that being not exceeding 10 ppm. But even that is too much gluten for some super sensitive celiacs and will cause a reaction. The second issue with oats has nothing to do with gluten per se but with the protein found in oats called "avenin". Avenin has a structure similar enough to gluten to cause a reaction in some celiacs. This is called "cross reaction" not to be confused with "cross contamination" discussed in the previous paragraph. So, for whatever reason, whether cross contamination or cross reaction, it is estimated that about 10% of celiacs react to oats.
    • dublin555
      Karen, that sounds really tough. You must find both RA management and your new gut problems extremely irritating to handle at once. Together with your pain relief you still experience ongoing bloating complications that drag on without a resolution. Of course visiting a doctor to obtain a proper celiac diagnostic evaluation becomes necessary when no formal diagnosis has been received. Your journey toward recovery has been lengthy yet it brings comfort to notice your progress during this time. This support group offers you valuable help because there are people experiencing the same concerns with you. Working through your issues will be easier.
    • dublin555
      Yeah, it’s tricky. I’ve seen a lot of mixed opinions too. Some folks can tolerate certified gluten-free oats without a problem, but others with celiac still react. Honestly, it really depends on your sensitivity. Your doctor would be the best person to ask about your specific situation.
    • Matt13
      Hi guys! Can we eat them an can they cause villious atrophy? I saw multiple articles about it an they have very different opinions… so what did your doctor told you? Thanks!
    • robingfellow
      I can't edit my posts, but I forgot to note as well: I also had low iron and vitamin d according to my blood tests, despite already taking supplements for each
×
×
  • Create New...