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

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
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    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

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.