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Got Results From Last Exam Now Worried&confused!


Tiredsean

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Tiredsean Explorer

This will be a long post but I really need opinions.Below are my celiac results and thyroid results plus vitamin deficiency reports plus doctors comments below.Just so everyone knows I scheduled today with my doc otherwise everything was considered normal to them by phone??? For celiac :anti-gliadine iga. 0-19.9. Result 2.6. Anti-gliadine igg . 0-19.9 result 2. Anti- transglutaminase. Iga. 0-3.9. Result 1.23 For thyroid: tsh:1.12. Free t4: 20.3. Range 12-22 Freet3 coming soon took it today was left out last time. Vitamin stats: vitamin D 148 range 79.9-250 (I supplement 4000iu daily) . B-12 range 179-660 result 874 I supplement 1000mcg was told to back off supplements, Iron: range 11-28 I'm 17 folic acid: range 7-39.7 I'm 32.8 Ferratine : 30-400 I'm 114.9 CBC count:all good Urine test:all good Cortisol: 64-536 range I'm 482.3 My sodium and potassium chlorur and glucose good . The glucose was actually 3.3-6 range I'm 6.2 .He said at that number they don't bother with it. Ohh and calcium range 2.13-2.6 I'm 2.47 and magnesium range .65-1.05 I'm .89 and I supplement both calcium and mag . Here is where I'm worried but doc isn't and wouldn't of bothered with it if I hadn't gone to see him today. Two readings for liver ALT. 5-41 I'm 55 and Ggt range 08-61 I'm 64 and lastly cholesterol total range 3.15-5.18 I'm 5.38 and LDL cholesterol in the breakdown range 1-2.59 I'm 3.77. HDL cholesterol I'm in range. The doc says people like alcoholics or over weight people have readings of double or triple the liver readings I have so that's why he didnt bother. To appease me he ran another slew of just liver tests and even said because I worry so much at 145$ an echo scan of my liver/abdominal area just to settle my mind.He also told me to stay off gluten because 1: when we tested the first time it had been 3 weeks I was off gluten and I was off previously before my spaghetti dinner episode. 2: it can't be ruled out and my second big body shut down of fatgue,muscle pain/tension/weakness/shortness of breath and palpatations was again another spagehtti dinner last Friday .He said it can be complete coincidence or actually gluten causing worse and worse symptoms each time I eat it. He also said it can take way longer that a week to feel better after eating gluten and way longer that that to heal the collateral damage ??? I'm just scared now that I have liver cancer and they will find something on the echo scan and that will be my end.Ive been sick too long (march 2011) with off and on symptoms and its taken a huge toll on my mental stability!! Also high colesterol? On a fruit/meat/veggie and potatoe chip diet? Hell I've lost 25 pounds!! Apart from two major glutening dinners I've been pretty hardcore gluten free


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shadowicewolf Proficient

If you've been gluten free before testing started, then it would throw them off. Very off.

At any rate, unless you were to go back on the gluten, any further tests for it wouldn't be very conclusive. There is a genetic test you can have done to see if there is a chance that you could develop it.

Even if you did go back on it, there is no say whether or not you have celiac. It could just as easily be NCGI (non-celiac gluten intolerence) which mimics many of the same symptoms that celiac has (outside of actual damage).

nvsmom Community Regular

'Wolf is right about the NCGI (in my opinion). It is much much more common that celiac and sufferer's don't have the intestinal damage so unlike those with celiac, they often have normal vitamin and mineral levels (there are exceptions - I'm one in fact) and they don't have the low cholesterol levels that many celiacs have.

Most of your tests look really good, so chances are you don't have celiac or thyroiditis. celiac disease does have a 25% false negative blood test rate (approximately) so there is a chance you are one of the minority.

Either way, it's probably a good thing to go gluten-free for at least a few months, a half year is better.

BTW, many around here have astonishing stories of "unexplained" liver function recovery after going gluten-free. Try not to jump to the worst conclusion. Chances are it's not cancer, and your diet (gluten) has affected your liver.

... And make sure those potato chips are gluten-free. ;) Best wishes. Let us know how it goes.

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    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
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      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
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      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
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