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

Waiting For Blood Test Results


Bowler Family

Recommended Posts

Bowler Family Newbie

My daughter (19) was given a blood test a week ago and we haven't heard anything. How long does that test usually take. She went to the Dr. alone and she says the dr. didn't tell her when we'd hear.

In the meantime she decided to go gluten free because she read the list of symptoms and had so many she got excited about feeling better. She is feeling a lot better. Her stomach has been a lot quieter. And she as hasn't had diarrhea for the first time in years. (except when she's been constipated.)

The main thing I have noticed is that she has been a lot easier to wake up in the mornings. For the last several years it has been absolute torture to get her out of bed. But in the last week she has gotten up before me and on the other days she has been very easy to wake up. And she is in a good mood!

I have a lot of questions, but here are two.

1. If something has no gluten ingredients but was made on equipment that was also used to fix wheat, is it safe? Is this one of those things that you just have to try because some can handle it and some can't?

2. If a person has celiac, have they always had it? Can they ever get rid of it?

I look forward to learning for your experience and knowledge.

Sharon


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

The symptom of lethargy and tiredness and difficulty waking is consistent with the opiod effect of gluten. My son is 16 and within a week of gluten free he was easy to wake up, but it had been torture since he was 9 to wake him. I, too, had the sluggish sleepiness in addition to a bunch of other symptoms.

In two weeks of gluten leaving this house, the moods got lighter and we are playful with each other. Before that we were both just dragging through everyday life until we could fall into bed again. It is such a relief to have our personalities back.

To answer your questions: In the beginning I wasn't worried about "processed in a facility that process wheat" statements. I just didn't think I would be THAT sensitive to gluten cross contamination. However, it didn't take long for me to start wondering what was making me feel bad, and those were the first likely culprits. I don't eat them anymore if they say that on the label. You are absolutely right that it is an individual thing, and some people find they can handle it. Others can't. I guess it is trial and error on that one.

The second question: No you can never get rid of it. The avoidance of gluten will have to be a lifetime commitment. There is no cure or medicine. Reactivity actually becomes more sensitive once the gluten is out of your system. At least for a lot of us. Such that cross contamination becomes more of an issue and makes you sicker than you ever thought one grain dust of wheat could make you. You won't believe it at first. But you will have to believe it to keep staying well. I learned the hard way, yes, lipstick can make you sick. Yes, kissing someone who ate gluten can make you sick. Yes, eating in a restaurant that serves pancakes can make you sick no matter what you order.

Have you had it all your life? Research is mixed, with some saying gluten intolerance is on a continuum and ends with Celiac. Others say it is with you all your life, it is only when you get the realization or the diagnosis that you can look back on symptoms that were probably present your whole life, but were never attributed to gluten. Others say it takes the Celiac gene and a "trigger" in the environment such as a viral illness to cause one to start reacting to gluten. Others say you can develop Celiac at any age.

The only consensus is that gluten must be avoided for life to prevent illness and damage to the Celiac or Gluten Intolerant person.

Cara in Boston Enthusiast

Glad your daughter is feeling better.

I don't know much about celiac disease because I am still in the middle of testing. I just wanted to share my story because I wish I HADN'T gone gluten-free so soon.

I had the blood test done and was found to be POSITIVE. The doctor was certain, without a doubt, that I had it. She referred me to a specialist. Being impatient, against the advice of everything I have read, I went gluten free because I was so looking forward to feeling good again. When I finally got seen by the doctor I had been gluten-free only 10 days. Not long enough to feel better, but maybe long enough to mess up future tests. He gave me a blood test that day and scheduled the endoscopy two days later. He felt sure that the 10 days would not change the results.

Well, both the blood and biopsy came back negative, so I am back at square one. It is even more frustrating now, because I know I have it, but to get a diagnosis, I now have to consume gluten for the next three months in order to be re-tested.

I know many don't need an actual diagnosis but I want one so I can ensure that my doctor is on the lookout for any related conditions down the road. It is important to me to know for sure. I would imagine at age 19, you would also want to be very certain before making a life-long change.

Anyway, I just thought I'd share. I really wish I hadn't changed my diet before the testing was complete.

Cara

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    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

    • 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.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.