taynichaf

I am still waiting for my test results while eating gluten And I actually am doing the gluten challenge for 6 weeks! Even though I I havent been strictly gluten free for long, I want accurate tests. You will probably just have to wait an extra week to atleast see your blood tests... But even then, the blood tests might not even be accurate! I say you beg for the endoscopy despite what the blood tests results are... Then after all that is over GO GLUTEN FREE, and you'll never have to worry about the gluten challenge again!  It sucks now but look at it this way... You've already been eating gluten for 40 something years... so what like one more month?? Atleast you know you have a problem with gluten, and in a couple weeks you'll know how to treat your symptoms!

Maybe use this waiting time to prepare for the gluten free lifestyle??

Ohh but like i said this was along time ago so is it like still even a problem?i was just curious with what it meant.

Well it hadn't happened again..but that's scary:( I learned my lesson from that night though.

And I don't drink very much! So it's not like I grew a tolerance to it..when I drink it's like my body is impaired but my mind stays sober..and I quit drinking all together because of this.

Thanks <3

A few years ago I drank to much and blacked out...the people taking care of me said I kept puking up black tar like stuff...I just remembered it and looked it up thinking it would mean alcohol poisoning..but all I found was GI related things that talked about puking up blood!.. Could this be an early symptom of gluten intolerance?? Or does this just happen when you drink way too much?

Just a random question, but I was just curious what you all think..

I also found that after awhile I would still feel sober when drinking..maybe that has to do with gluten intolerance too??

Thanks all <3

Ohhh! And I checked out my old tests and looked up the lab they came from...and all the tests were available!!! But he only did one!

Lol,I should've!..but I guess I wasn't thinking:/ I did look at it, but it didn't say any specific tests..just something about celiac lab..

I'm still doing the challenge! It's just, when I went to the doc she asked if I wanted to be tested now or if I wanted to wait..and I couldn't resist ha,I want to know ASAP! Ha.

Ah! I feel so bad that you've been eating gluten for so long I reaally hope that you can get an endoscopy to see what's going on!

I'll pray that all goes well for you! And I hope I have celiac..it sounds bad but I just want a diagnosis...

<3

Well she gave me this paper and told me to go next door..and when I asked if it was the full panel, she didn't make sure it was..I had no choice in it then:/ when she cals with the results I'm ordinary asking for a copy!

I'm just waiting for my test results and I really hope they cone out positive..mainly because it would be proof to the people that called me a hypochondriac! So how did you all feel while waiting for a diagnoses???

And please...PLEASE pray that my test will be positive!..it would change EVERYTHING..

Thank you so much

Nope, she already ordered the tests and sent my blood out:/ just praying that I'm celiac while I wait for the results now...

Ohh! That makes sense.... For the tests i've done, I just tell the doctor that I think I have celiac disease and ask for the full panel... Then they would just find a test and i'd go get blood drawn. I shouldve tried to look up certain tests before... but I never thought I could even chose, ha. But thanks!!

Where I am the doctors choose the tests... I could probably try and get my own somehow, but insurance wouldn't cover that and I'm unemployed..

Thank you for the info! And I will def pray for you <3

I'm not sure if that wording was right..Lol. But anyways, does anyone know about how long it takes to get a negative test result?? I know no one probably knows for sure... But i'm just wondering from anyones expiriences or maybe someone who just knows a lot about this?...

Since the beggining of the year I was following a really clean diet with just a few slips here and there. Then I tried low fat and high carb on and off, and then strictly for about 2 weeks. Then I had a carb binge and a week of eating bread with constant stomach pains(which led me to celiac) I tried a few days gluten free but I went back on it for about a week to get tested. After my negative tests I quit eating it for a week and then started eating it again for a new test within a week. How accurate would you think the results would be? My doc will probably get me an endoscopy and im hoping to be on a gluten full diet for at least 6 weeks before the biopsy.. I hope thats enough, since I've never been strictly gluten free for that long of a time period?.

Lol, sorry, I'm just very frustrated witht his and have so many questions

Thank you!

I saw one specifically for a full celiac panel... He tested like two things out of the whole panel I requested. They were negative, but I'm not convinced. I just went to a different doctor to get the test and I'm not sure what she tested.. But I asked if it would be the FULL celiac panel, including the the one that starts with D(I had it written down) and she never gave me a yes or no answer... She went on and said that the blood tests don't diagnose it, the biopsy would. She made it seem like I would get an endoscopy if the tests were negative, so I am happy about that.. But really... How hard is it to do a FULL celiac panel!?!? Testing only a few things leads me to not believing those tests..

Full celiac blood panel? Stool testing? DNA? What do you guys think??

New here and I wanted to just ask if any of you have had issues with exercise, especially those of you who used to be athletic and then "came down" with celiac/gluten intolerance. When I was 21 I was very active, fit, had a great amount of energy and could exercise quite a bit, running for about an hour everyday and lifting weights. Then I came down with feeling fatigued, and feeling worse after exercise, feeling like my body was inflamed. I have been tested for lupus, RA, and several other autoimmune disorders and come out that they are negative. The only test to be positive/elevated ever was the deamidated gliadin peptide IgG. I miss exercising so much, but it seems like when I do, my body reacts negatively. Has anyone ever experienced this? Fatigue after exercise, pain in joints, lack of endurance and feeling like your body gets inflamed afterwards? I am new to the gluten-free diet, only been seriously on it for a day and a half so I haven't seen any major improvements in symptoms yet. Thanks in advance.

I used to be very active when I was younger... As i got older I got more and more tired. I had unexplained weight gain, so I forced myself to exersize and eat healthy(whole wheat bread.....)  tortured myself and finally got to my goal weight.. then i ended up gaining it all back(about 15 pounds) within two weeks! Getting off topic...lol. But anyways, I would force myself to workout despite fatigue, but now I am at the point where even thinking about exercise makes me exhausted! I gave up running awhile ago because I lost my good endurance I guess.. I got into weight lifting, and now I gave that up too because I just cant push myself like i used to I can't even get myself to try ONE push-up, because the thought just exhausts me!... And I think I'm afraid to see how week i've become...

Good luck on the gluten free diet! I'm sure you'll get all your energy back so you'r able to exercise!

I agree with ravenwoodglass, get the up to date DGP tests like in this panel that I did:

 

 

Total IgA       (a control test to make sure you have enough immunoglobulin IgA)   

Transglutaminase    IgA               (tTG-IgA)

Deaminated Gliadin  IgA              (DGP-IgA)

Deaminated Gliadin  IgG              (DGP- IgG)

 

This test should cover all the bases to detect Celiac's intestinal damage.

 

Do you have to tell the new doctor that you already did the Celiac blood test and were negative?

He might not understand about your short gluten challenge affecting the first test.

 

 

AGA - IgG and AGA - IgA are the older tests no longer used for Celiac but some people do it to detect gluten sensitivity.

You might want to include the AGA  but be sure the 4 tests in the Celiac panel listed above are on your requisition including that

total IgA test.

My doctor did an IgA test thing... and no, i don't suppose I have to tell my new doc!

Thanks guys!

I know, it sucks..but keep eating gluten! You can get a test within like a week, so just wait..and even after that you'd probably want to keep eating it incase you want an endoscopy. And then of everything comes back negative just consider yourself gluten intolerant and don't eat it!

That's such a long time!! And the test was negative?! Ugh, sorryyy:(

I know this will be hard, but if I don't give myself the best possible glutening, I'll be wondering for the rest of my life. And I was scared to do the challenge before, but I understand that it's the best thing I can do right now..

thank you so much:)

BTW, I'm seeing a doctor on monday, but I plan on just talking about my symptoms. I want to do the challenge for at least 6 weeks before any testing.. Im an 18 year old female.. If that mmakes a difference.

I did one, but only for a week before my blood tests. I was in such pain the day I went to the doctors, but my tests were negative. Since he only tested like two things im going to a different doctor, but this time I want to make sure to gluten myself right, for accurate test results.

So who has done the challenge?? How long were you gluten free before the challenge? How long did you do the challenge? And what were your test results? (blood,endoscopy, anything else)

**I know I am gluten intolerant, but I want to make sure I can totally rule out celiac before I go gluten free for the rest of my life. And I like to know exactly what would be going on inside my body if I got glutened... if that makes sense...

Thank you everyone!!

I saw the title of your thread and jumped on it. My "lump" is different though. Yours does sound like a lymph node. I have some of those too, swollen and rock hard. They SAY that if they can be wiggled around it's infection. If they are hard and don't move when you try to wiggle them, it's cancer. I don't know if that's true in every case, but that's what I have read.

 

My other "lump" is on the jawbone itself and it too is rock hard, doesn't wiggle, is the size of a chicken egg, and hurts so bad it takes my breath away. I can't get my mouth open enough to even eat. I'm on a liquid diet right now. Someday, if I'm still alive by then, I'll get insurance...

Oh my gosh!... I'm so sorry!.. I hope you get help for that soon!

And I can wiggle it a bit, so no cancer I'll just bring it up to my new doctor and see what he has to say.

But hopefully all goes well for you XOXO

I havent seen anything like this related to celiac, but i just thought i should ask. under my ear lobe in the back of my jaw i can feel this pea-sized bump. It doesnt stick out or cause much trouble, but sometimes when I start chewing something I get a shooting pain where the lump is. It doesnt happen all the time, but it seems to be happening more and more. Ive noticed it for a few years, and when I brought it up to my doctor he just said swollen lymph nodes and didnt do anything about it. Also, it dosent hurt to touch it or anything....

Anyone no if this could be a symptom of celiac? (im not a diagnosed celiac)

The first test, the Immunoglobulin A (IgA), S, is the control test to make sure that you manufacture what is considered a normal amount of antibodies, and you do.

 

The second test is the doctors' preferred test, because it measures the antibodies that are damaging tissue in the small intestine (tissue Transglutaminase).  There usually needs to be quite a bit of damage for this test to be positive.

 

There is a newer, more sensitive test with great specificity for celiac, called the DGP (deamidated gliadin peptide) which can pick up celiac disease earlier then the tTG.  Not too many doctors have a lot of experience with this test.  If I were you I would ask to have this test run.  I hope you are still eating gluten? 

Okay, I made a new doctors appointment at a different place(last doctor couldnt test for full panel or anything). I'll talk to my new doctor and go from there, and I might just request a DNA test to start out with. If that test is positive I'll restart a gluten challange and go from there... I will make sure that I get the DGP test this time!

I havent been eating gluten.... But it hasnt even been 2 weeks since going gluten free, so I will start glutening myself for about 6 weeks before a new blood test.... Does this sound good??