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
      131,550
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.