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

Advice On Test Results, Please


BRCoats

Recommended Posts

BRCoats Enthusiast

Hi,

I've received my results, and my doctor, on the bottom of the results wrote, "Definitely positive for celiac sprue. Would recommend gluten free diet." My IgA was a 26 (weak positive), and my IgG was a 90 (anything over 30 is a moderate to strong positive). Obviously, my doc sees no need to do a biopsy. Would you say that those test results are enough evidence to go gluten free? I already have, because I've been sick for over a decade (told I had IBS, anxiety, etc.). Three years ago, I was bedridden for nearly a year, and have never fully recovered. I went gluten-free two weeks ago, and although I have quite a bit of GI symptoms still, my mood has improved about a thousand percent (my husband is rejoicing!). :rolleyes:

I would greatly appreciate any thoughts on the results. I haven't talked with my doc yet (he is five hours away). So curiosity is getting the best of me. Hopefully, I will have a phone consultation with him shortly.

Thanks!! I love this board!!

Brenda


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Be glad you have a doc who's will to forgo the biopsy. You're not going to have antibodies to a substance in your blood unless you're body is reacting to them (and they've got a way of getting out of your GI tract, which implies some level of intestinal damage), so yes, the general consensus on the board is that positive blood tests alone are more than enough reason to go gluten-free. While _some_ doctors still was a biopsy for a formal diagnosis, more and more are realizing it's not necessarily necessary.

BRCoats Enthusiast

Oh, trust me....I AM glad that I have this doc. Even if he is five hours away (ok, so that's dreaming....more like six hours at least). ;) He is an M.D., but he works with a naturopath and chiropractor. But since he has the official title of M.D., my insurance pays for it. I have to pay a touch more for the natural advice, but it's well worth it!

Thanks for the reply. I feel a little better about my diagnosis now. On with the gluten-free diet.....

Brenda

CarolynM Newbie

Try the diet for a while - the biopsy is very expensive, not completely without risks and there is the chance of a false negative which gets you back to square one or before square one it seems.

That was our case - did the biopsy, wanted to trust the doc's expertise and - it came back normal. Went back to not watching her diet and her condition deteriorated. Now after no formal diagnosis, we decided to do what we thought was best -- two weeks gluten-free and my daughter is sleeping through the night, no longer complains her belly hurts and has firm stools.

Where is this doctor of yours? I like you would make a considerable drive for quality care. In the meantime, I am doctor, dietitician and mom.

Good luck and glad to hear you are feeling better.

BRCoats Enthusiast

Carolyn,

I have been gluten-free for about two weeks....although those pickles I had on my Wendy's hamburger the other day were not gluten-free. :angry: And my toothpaste was not either....so I don't REALLY know how long I've been technically gluten-free. However, I have noticed a very dramatic change in my moods. But not a whole lot of improvement in my GI symptoms. The bloating is better, but that is all. At the same time I was diagnosed with celiac disease, I was diagnosed with polycystic ovarian disease. So I'm wondering if that has something to do with it. My progesterone is sky high, etc.....yada, yada...all besides the point.

Anyway, my doc is in Grand Junction, Colorado. I live in Longmont, Colorado....about 30 minutes north of Denver. I lived in Grand Junction for about ten years, and had gotten in with this doctor about six months before we left. I went ten months here in Longmont and couldn't get a single doc to help me. I was told I had anxiety and then was diagnosed with gastroparesis, which nobody knows a cure for and was therefore suposedly still suffering from anxiety. UGH!! Anyway, when I was FINALLY well enough to make the trip (carrot and celery juice saved my life!), I went to see this doc in G.J. That was nearly two years ago, and he has really helped me. He spends almost an hour with me every time I go, and he's just willing to dig in and figure it out with me. I was the one that suggested the antibody test, because I had eaten a few meals without bread, and noticed a slight difference in how my system handled it. He agreed, and WHAMO!! Here I am! :D

Like you, I believe that this diet is what is best for me, so I'm doing it. After 12 years of digestive problems, and three years of being TOTALLY unfunctional, I'm tired of it. The inconvenience of going gluten-free is NOTHING compared to being that sick.

Glad your daughter responded so well to the diet. SHe's a cutie. :)

So you are a doctor?? Wow, we are blessed to have you here!! Where are you located?

Sorry for the long post....I think I needed to vent a little. :-)

Brenda

P.S. There is a chance that I'll be moving back to the western slope of CO. I'm hoping it goes through, as that would cut my drive down to an hour and a half!! :rolleyes:

tarnalberry Community Regular

Don't overlook the change in mood. Most of my symptoms are NOT related to my GI tract. Mood and energy were two big changes for me, and I tell ya... I accidentally get gluten... might as well avoid me for a few days, 'cause I'll be nasty. :-)

CarolynM Newbie

LOL- didn't intend to mislead anyone--I am not a doctor - just feel like one after no luck with getting a diagnosis from ped GI here in Indiana.


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



Celiac.com Sponsor (A8-M):



BRCoats Enthusiast

Heehee.....well, too bad you're not a doctor, but we're still fortunate to have you. :-)

Too funny!!

Brenda

BRCoats Enthusiast

Tiffany,

I'm the same way with mood. My husband is rejoicing that he has his "old wife" back. And I'm rejoicing that she's back too. :-)

Still struggling with the energy issue....hope it gets better soon.

Brenda

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748

    tessycork47
    Newest Member
    tessycork47
    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.