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Advice On Test Results, Please
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9 posts in this topic

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

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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.

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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

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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.

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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:

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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. :-)

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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.

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

Too funny!!

Brenda

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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

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
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