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11-01-2007, 12:49 PM | #1 | |||
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Junior Member
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Hi, new member here.
I've been trying to tackle my health issues for about 4 years now with no definitive answer. This is my history that i typed up for my new physician that i'm seeing (trying to seek a second opinion). I tried to make it as concise as possible but i have a complicated history. Quote:
Anyway, the first thing my new physician wanted to do was run some general bloodwork as well as a celiac panel. I got the results back today: Quote:
My doctor said I may have a gluten sensitivity but not "full blown Celiac". What do you guys think? The rest of my bloodwork showed some spikes as well.. Quote:
I'm getting a referral back to the same gastroenterologist that i had before, hopefully will get some more answers this time Any advice/suggestions/insight would be appreciated. Thanks |
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11-01-2007, 05:17 PM | #2 | ||
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Senior Member (jccglutenfree)
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Well... You may fall short of a positive anti-tTG by a little bit, but in terms of being in the gray zone... you are dark gray! Little doubt in my mind that you are gluten sensitive based upon your positive antigliadin IgA, IgG, and symptoms.... and an anti-tTG just shy of making the golden mark toward a celiac diagnosis.
I think you are on the right track, and my advice (I'm obviously not a doctor) would be to go gluten free based on the results thus far and never look back. I think there is a really good chance you'd see improvement in your symptoms. DO NOT BEGIN A GLUTEN FREE DIET IF YOU THINK YOU WANT TO HAVE A BIOPSY OR A FORMAL CELIAC DIAGNOSIS, because you need to be eating gluten through the entire diagnostic process. I'm somewhat impressed your doctor said you probably have gluten sensitivity. Did he recommend a gluten free diet with that? If you are one who really wants to shoot for a clear diagnosis (sometimes at the expense of your health)... you could... 1) Ask for a biopsy. I think there is at least a fair to good chance that you might show some degree of damage on biopsy (aka celiac disease). In the "olden" days, a positive antigliadin IgA earned one a biopsy. I think it still does! A positive anti-tTG has a positive predictive rate of about 95% that they will find damage on biospy. A positive anti-gliadin IgA has a positive predictive rate of anywhere between 50-80% depending upon the study you read, sometimes higher. It's been a long time since I've looked at those stats, but I'll leave you some references. A positive antigliadin IgA is more predictive of finding intestinal damage than a positive antigliadin IgG. I do think, if you are interested... you should ask for the biopsy. If you are happy to move to a gluten free diet and let the diet speak to you... go for it. That is how we approached it with my daughter, and based upon the results we've never looked back. Check out this article and look for the algorithm that says a positive antigliadin IgA suggests a high probability for celiac disease. http://www.aafp.org/afp/20021215/2259.html I think most celiac experts would proceed to biopsy in any symptomatic patient with your blood test results. You could request that the anti-endomysial test be run as well because sometimes it is positive when the anti-tTG is not clearly positive. 2) Wait to get worse (which is basically what they usually ask of those who are symptomatic, but fall short of a clear celiac diagnosis), and retest your blood in another year. It would not be uncommon to turn positive at that point. I would not suggest waiting to get worse, but there are many doctors who would. Quote:
Diagnostic Testing Delay of Diagnosis (You wouldn't be the first to get the anxiety diagnosis. I think I got it, too, although not stated clear out. And, yes, all the symptoms I was exhibiting were anxiety promoting, but anxiety wasn't the problem.) The Gray Zone Genetic Testing Limitations of Blood / Biopsy (Be sure to look for the studies that talk about seronegative celiac disease... I forgot to mention that up to 20% of biopsy proven celiacs have a negative anti-tTG. Your positive antigliadin IgA is really suggestive of celiac disease... I think you'll find the studies here to show that. A biopsy really is warranted, unless you are convinced to go gluten free for life without one.) Antigliadin Antibodies Gluten Sensitivity vs. Celiac Disease (I think a gluten free diet makes sense for you even if you have a negative biopsy, but it might be worthwhile to know if you actually have celiac disease... which should prompt testing of all blood relatives) At Risk Population for Gluten Sensitivity/Celiac Disease So... in summary... you could.. 1) Commit to a gluten free diet based upon the results so far 2) Get a biopsy. You've earned it, and it could be positive 3) Request additional blood work... a positive anti-endomysial would be a clear indicator of celiac disease 4) Wait to get worse... and retest your blood again in a year. I really don't recommend #4! Cara
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. Last edited by jccgf; 11-02-2007 at 08:05 AM. |
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11-01-2007, 05:21 PM | #3 | ||
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Senior Member (jccglutenfree)
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How could I forget? What was your "normal" B12 level? Also check The Gluten File, way bottom down on right bar, for a page on B12 deficiency and symptoms. A "normal" level shouldn't always pass.
B12 deficiency can cause some of the symptoms you describe... including bowel urgency, being off balance, foot pain, etc. Hard to say if you are experiencing peripheral neuropathy or ataxia (possibly with foot pain, off balance)... but gluten sensitivity can also cause those things. Also forgot to mention... mucous in the stool is a common finding in gluten sensitivity/celiac disease. Also is h. pylori.... there is a page on that in The Gluten File, too. I'd call that GI doctor by telephone, and tell him your blood test results, and ask if he'd recommend a biopsy. If not... I'd probably look for a different doctor! Cara
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. Last edited by jccgf; 11-01-2007 at 05:52 PM. |
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11-01-2007, 06:27 PM | #4 | ||
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Junior Member
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Thanks for the great reply. My B12 was 344 with the reference range being:
- >150 = not b12 deficient - 110 to 150 = possibly b12 deficient - <110 = probably b12 deficient I should have noted that im taking b12 supplement (in tongue strip form 1000mcg) and a b50 complex (pill form) |
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11-01-2007, 07:11 PM | #5 | ||
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Junior Member
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testtesttest
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11-01-2007, 10:12 PM | #6 | ||
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Senior Member (jccglutenfree)
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That is the most interesting reference range I've seen for B12... so I am just confused!
I was 294 (150-1100) as range. They typically say anything under 400 is suspect for problems, and many of us who have had B12 problems aim for a level of about 1000. But, no matter the confusion of range, I'm happy to hear you are taking 1000mcg daily. I'd stay with that....forever!
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11-02-2007, 06:20 AM | #7 | ||
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Magnate
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--that B12 level certainly adds weight to the argument that you have gastric malabsorption, even if you would not currently rise to the level of "biopsy proven flattened villi gold standard celiac".
Vitamin and mineral malabsorption/deficiency are very common in gluten sensitivity/celiac (I wonder what your Vitamin D and calcium/magnesium/potassium levels are), though, of course, there are many possible causes of such malabsorption/deficiency. They may all be ultimately related to too much intestinal permeability (Google: "zonulin" if you want to read about the cutting edge of research/theory here). I don't think any of us would think a B12 levle of 344 is "normal"--especially if you received that result after starting to take supplements (what kind are you taking, by the way?). Most of us believe the serum B12 can be a misleading/incomplete test--people have symptoms of deficiency even into the 500's/600's at times--but the ranges you quoteed are WAY outdated. In Japan and many parts of Europe, the low end of the range starts at 500-550, and there is no uppler limit. Most of us strive for four-figure serum concentration numbers to make sure our tissues are at least well-bathed in B12. You should definitely take a look at Rose's B12 site: http://roseannster.googlepages.com/home --and anything Mrs. D has written about vitamin/mineral deficiency; in fact, our vitamin/supplement forum is a good place to go: http://neurotalk.psychcentral.com/forumdisplay.php?f=49 |
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11-02-2007, 07:38 AM | #8 | ||
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Junior Member
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Thanks for the reply..
My Magnesium level was actually higher than normal it was 1.08 with reference range of .65 - 1.05 potassium was also high at 5.2 with ref range of 3.3-5.1 sodium was high at 146 with ref range of 135-145. calcium was 2.40 with 2.2-2.65 as ref range So im not sure what those high levels mean, doctor said i might have been a bit dehydrated? Quote:
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11-02-2007, 07:41 AM | #9 | ||
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Junior Member
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I am taking Jamison brand b12 strips
http://www.jamiesonvitamins.com/en/p...amins_182.aspx and Jamieson b50 complex http://www.jamiesonvitamins.com/en/p...amins_167.aspx |
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11-02-2007, 05:05 PM | #10 | ||
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Magnate
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--for high serum electrolytes, but here are many others, perhaps related to gluten and perhaps not.
First thing to check might be whether the test stood around too long--often, there is leakage of potassium/magnesium from ruptured blood cells into serum--the more time, the greater the leakage--and this skews the measured results. (The more accurate test, especially for potassium, is to measure pure plasma originally.) Also, high blood acids such as are found in diabetes and kidney dyfunction can produce elevated levels. And many medications play havoc with these ions. But, your results are not WAY out of range--they're close enough to the reference range so that the tests should in all likelihood be repeated. A 24-hour urine test, to see how your kidneys are handling things, would probably also be a good idea. The supplements seem innocent enough--though I was not able to determine the form of the B12 or the other B's from the links (most of us like the easier to metabolize methylcobalamin B12 rather than the cyanocobalamin in most commercial preparations, and the P-5-P coenzymated form of B6 rather than straight pyridoxine). Where are you currently being treated (e.g., where were the tests ordered from, and through)? Last edited by glenntaj; 11-03-2007 at 06:31 AM. |
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