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Is This Celiac's?


lizzy21

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lizzy21 Newbie

Hi, I'm new to the boards. Could my symptoms be Celiac's disease? I almost constantly feel gassy and bloated, and I have diarrhea almost on a daily basis, combined with bouts of constipation. I have also been feeling nauseated after everything I eat lately. For years I believed I had lactose intolerance, but I have been dairy free for several days and I still feel ill. I am constantly fatigued, I can sleep for 12 hours a day and still feel tired. A friend of mine was recently diagnosed with Celiac's, and my symptoms seem similar. Could this be my problem? It would be wonderful to finally figure out why I have been feeling terrible for years. Thanks!


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Rikki Tikki Explorer

It sounds like it could be. You can either go gluten free and see if you feel better or go to the doctor and have the blood test. Just don't go gluten free and then see the doctor, it could cause a false negative.

Hope you feel better soon and welcome

Guest nini

it sure sounds like it could be, like Rikki Tikki says, you can either go get tests done or just try the diet and see if it helps. Ultimately how you do on the diet is your best diagnostic tool as the blood tests and biopsies have a high rate of false negatives. NO false positives though so if the testing came back positive you could be assured you have it. However, as I said, the diet is your best indicator and if you are comfortable with self diagnosis you can simply try the diet and see if it helps you, but if you do want to pursue official testing do not start the diet until testing is complete and then regardless of the results you could try the diet then. (so see why you could just avoid the delay and try the diet now?) Ultimately it's your decision if you need official proof or if you just want to see if the diet helps you.

If you do not improve on the diet that will not affect further testing, you can still be tested for other things (not celiac) once on the gluten-free diet. Keep in mind most of us take an average of 2 years to heal (not the 6 months most Dr.s will tell you) and some people even if they do have celiac, still don't get better. Either from refractory sprue or other intolerances or other health conditions.

Mayflowers Contributor

It could be celiac but I wouldn't base all your symptoms on that. I went gluten free and I'm still tired. I have a lot of allergies and other intolerances too.

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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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