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Just Tested....still Don't Know What's Wrong
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I went to my doctor about 2 months ago. I was advised to be gluten and dairy free for a month and a half and then start eating gluten again. During that time, my symptoms were nonexistent and I felt better. But when I started eating gluten again, my symptoms returned and I felt that my previous symptoms were worse. I just had blood tests to test for allergies to wheat, milk, etc, including Tissue transglutaminase IgA. I just received the results and it seems that they are negative. Could they have come back negative because after being gluten free, I only started eating gluten for 2 1/2 weeks? It is frustrating that the results came back negative and my symptoms are back. I just want to know what my diagnosis is or if its something else. My doctor didn't seem very knowledgable about gluten sensitivity and celiac disease, which from reading from many posts is very common. What should my next steps be? (I 'm waiting to hear from my doctor as I just got my results a few hours ago). In a way, having the test come back positive meant that at least I knew what was wrong but having them come back negative, it just feels that I am back to square one.

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Hello, and welcome.

I always feel so sorry for those whose doctors do things in reverse -- cause the medical reactions to go aay and then test for the medical reactions. It is absolute insanity. Test first, quit gluten second is the mantra we preach over and over. The blood tests are looking for antibodies to gluten, which start fading away once they are no longer exposed to gluten. And the sad part is, he could do an endoscopy with biopsy to test for intestinal damage, but after six weeks that may also be negative because sufficient healing may have taken place to take you out of range of the testing. There is great dispute about how long it takes on gluten to make the testing results valid, but the majority of doctors tend to underestimate the time required. Six to eight weeks for those not severely compromised seems to be a reasonable estimate -- YMMV.

You can continue eating gluten for a sufficient time for your results to be positive (if it is not too painful for you); you can ask for an endoscopy with biopsy to see if you can get a positive result from that (and make sure he takes at least six samples), or you can just try the gluten free diet and see how it works for you -- how did it work for you??

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I agree with mushroom. I would only add get written or electrinic copies of all test results.

Was the tTG-IgA the only celiac antiboody test run? If so, remain on gluten - if you can - and have the full celiac panel along with nutrient testing. Nutritional deficicies is another indicator of the malabsorption found in Celiac Disease.

Let us know if you have more questions. Iit is unfortunate that this diagnosis process is often extremely frustrating.

Hang in there :)

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And if all else fails and not eating gluten solves your problems, well, I think you know the rest.

richard

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Thank you for that information. It just comes to show that doctors do not have sufficient knowledge on this condition. I didn't have symptoms when I was gluten free and I felt better. Now with eating gluten, the biggest difference is that I am even more tired. It was difficult in the beginning eating gluten free. My doctor didn't really give any helpful advice to what to eat (I lost 10 pounds about less than 2 weeks because I didn't really know what to eat). I have actually had to educate myself on celiac disease because I wasn't reallly obtaining information from my primary doctor and the allergy doctor that reqested the testing.

I have also read about people being non celiac gluten sensitive but that there isn't a blood test, etc to test for this. I don't know if that is something to consider that I could have. I did hear back from my allergy doctor....he said to try gluten free and that there are no other tests to do. I was really disappointed to receive that response. I am considering contacting a local celiac clinic and getting a second opinion. I'm just concerned about the cost for additional testing.

Hello, and welcome.

I always feel so sorry for those whose doctors do things in reverse -- cause the medical reactions to go aay and then test for the medical reactions. It is absolute insanity. Test first, quit gluten second is the mantra we preach over and over. The blood tests are looking for antibodies to gluten, which start fading away once they are no longer exposed to gluten. And the sad part is, he could do an endoscopy with biopsy to test for intestinal damage, but after six weeks that may also be negative because sufficient healing may have taken place to take you out of range of the testing. There is great dispute about how long it takes on gluten to make the testing results valid, but the majority of doctors tend to underestimate the time required. Six to eight weeks for those not severely compromised seems to be a reasonable estimate -- YMMV.

You can continue eating gluten for a sufficient time for your results to be positive (if it is not too painful for you); you can ask for an endoscopy with biopsy to see if you can get a positive result from that (and make sure he takes at least six samples), or you can just try the gluten free diet and see how it works for you -- how did it work for you??

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I was tested for wheat, milk, eggs, etc. and the tTG-IgA only. The response from my doctor was that I should limited gluten but not totally eliminate it right away and to test what my body can tolerate. Maybe I need to accept that I won't likely get a diagnosis and limited gluten based on the fact the effects of my symptoms decreased. But I don't know what internal damage if any I might have. That is what also concerns me.

I agree with mushroom. I would only add get written or electrinic copies of all test results.

Was the tTG-IgA the only celiac antiboody test run? If so, remain on gluten - if you can - and have the full celiac panel along with nutrient testing. Nutritional deficicies is another indicator of the malabsorption found in Celiac Disease.

Let us know if you have more questions. Iit is unfortunate that this diagnosis process is often extremely frustrating.

Hang in there :)

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...

The response from my doctor was that I should limited gluten but not totally eliminate it right away and to test what my body can tolerate.

...

For anyone who IS an actual celiac (regardless of what limited/insufficient testing says) this is horrible terrible horrendous malpractice-level bad advice.

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I had limited gluten for years as I was wheat free 9 years. Gluten free is so different. My life is transformed.

Dreadful advice you got there.

Hope you find a way through, keep asking questions

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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