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

Wondering How Many Out There Didn't Get A Proper Diagnosis?

jabberwife

Recommended Posts

jabberwife Explorer
jabberwife
Posted

OK, just wondering kinda what my odds are. I have a father, brother, and sister who are all celiac. I have been told I have IBS, but in Jan 2005 had a blood test that came back negative. IgA at like 1 unit or something. Went to a gastroenterologist who still said it was IBS and prescribed me Zelnorm. Quit taking that after a few months, certainly doesn't help. I have alternating C with D but C dominant, as well as some serious gas at times. (yuck!)

Well, I have had itching on my shins, mostly, for the past few years, and there's no rash, but it's crazy itchy at times. I asked my doctor about it, and after running through possibilities, he thought I should look at food allergies. :huh: Well, I figured there was no correlation between my consumption of anything, except gluten and lactose, which I ate all the time. So...I decided to go gluten free (because of family history.) After about 3 weeks of gluten-free diet, I decided to also submit stool samples and gene tests to Enterolab. All stool samples came back negative, but 2 genes DQ1, predisposing me to gluten sensitivity. I figured...my tests came back negative, so I went back on gluten. (after about a month gluten free). I did one challenge on purpose, one on accident, during that month, and thought I had a reaction both times, although delayed 2-3 days. Serious D. But when I went back on gluten 2 weeks ago once I received results, I felt really foggy and lethargic the first few days, but other than that, no big difference in symptoms. (While I was gluten-free, I still had some C and gas)

Went to my doc Monday. Talked about what I had done since the last I saw him, and he felt I should go gluten free for longer. Said I had not been on the diet long enough to be sure. He suggested 90 days. I am back on the diet, but I am wondering what the odds are that I really am sensitive. I didn't show a big change (except for what I thought was a gluten reaction explained above) on the diet--I didn't feel a whole lot better, and still had gas. But my body could have just been adjusting the entire month I was gluten-free before.

Anyone else gone through this? I did think it was weird (and maybe I'm reading something into nothing) but my IgA test on Enterolab was 6 units, vs 1 unit from the blood in Jan 05. I was already gluten free when I did the Enterolab test, but it's higher? Or maybe it just picks up more antibodies? Who knows.

Sorry for the long long story! Any insight would be appreciated.

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

Celiac.com Sponsor (A8-M):


rinne Apprentice
rinne
Posted

For me the decision to be gluten free is based on how I feel not on a medical diagnosis. I have only been trying for three months and have accidentally glutened myself several times. I also gave up dairy after the first month. I can't say that I am recovered yet, I am still struggling but relative to how I felt prior to being gluten free there is no comparison. I will never eat gluten voluntarily again.

I am proceeding with the endoscopy and colonoscopy to rule out other problems but I will trust my gut when it comes to the diet I consume.

CarlaB Enthusiast
CarlaB
Posted

I used Enterolab after two months gluten-free -- my IgA was 60, so being gluten-free should not have affected the test. I also have two DQ1 genes. Enterolab is a different test with a different scale, so you're not comparing apples to apples when you compare it to your blood work. It sounds like you are not having a reaction to gluten.

That being said, many people just feel better when they don't eat it. My husband gets gassy and bloated from eating it, so does my daughter. My daughter avoids it, we haven't had her tested, but she never had any symptoms either. My daughter's seasonal allergies have disappeared now that she's gluten-free.

There's nothing stopping you from avoiding it. Since you have the gene, a sensitivity could be triggered from many things, I believe even over-consuming gluten. The good thing for you though is that you can enjoy a glutenous treat once in a while knowing you are not actually having an immune reaction to it. You also will be able to eat out without fear of contamination.

If you feel better not eating it -- don't!!

edit-- sounds like you have a good doc with an open mind!

mle-ii Explorer
mle-ii
Posted

Another thought is to test for IgA deficency which would throw off those tests.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      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
      New (possible) celiac diagnosis

      By Judy M · Posted

      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
      Patiently Waiting to See Results

      By Scott Adams · Posted

      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
      Gluten free beer ?

      By Scott Adams · Posted

      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
      Patiently Waiting to See Results

      By trents · Posted

      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.