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
BRCoats
Posted

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
tarnalberry
Posted

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
BRCoats
Posted
  • Author

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
CarolynM
Posted

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
BRCoats
Posted
  • Author

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
tarnalberry
Posted

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
CarolynM
Posted

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
BRCoats
Posted
  • Author

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

Too funny!!

Brenda

BRCoats Enthusiast
BRCoats
Posted
  • Author

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,695
    • Most Online (within 30 mins)
      7,748
    Aanhmcbride
    Newest Member
    Aanhmcbride
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.