Negative Blood Work Question

[TRex8]

Hi All- new here and new to all of this.

Quick info: 

I have hashimoto's disease and was hoping that trying gluten free might help with some ongoing symptoms that have not been relieved by levothyroxine and liothyronine (synthroid and cytomel). Well- one my main symptoms has been weight gain and an inability to lose weight and in the past couple of months since reducing gluten I've lost 30 pounds without really any other change to my diet/exercise. In the past month I've done my best to remove it completely (using apps etc. to scan my food) but since I am new at it there have of course been some misses on things that it is in and times that I've fudged it thinking it wouldn't matter. 

Additionally, I've always struggled with GI issues on and off. There have been times where I've seen the GI doctor for frequent diarrhea and mid-stomach pain without anything being resolved in terms of diagnosis, and then periods where I haven't had as much issue with these things. 

Since going gluten free I was feeling things were more regular, but having some out of town visitors and eating out more led to less meticulousness on my part. I was still getting gluten free items but not checking all the time if say fries were not coated in something, etc. and noticing more stomach upset and sometimes a cough/sneezing/nose congestion- which has also been an issue for me (I don't know if this is typically something that goes with Celiac or something else entirely, but something I've noticed when I eat often nonetheless).

Anyway, I saw my regular doctor and mentioned this all to her and she did the bloodwork for Celiac, which came back negative. I've read that if one has been on a gluten free diet for 2+ weeks it can lead to inaccurate test results. I am wondering if anyone has had this experience and is something I should continue to pursue? Or if considering the information I've laid it is probably the case that Celiac is not to blame for whatever is going on and maybe I just have some kind of intolerance related to my hashimoto's as I'd originally suspected. Either way I surely have seen a benefit from eliminating gluten and my body has an issue with it, I would just prefer to know if it may still be Celiac that is causing GI and other gluten related problems for me!

I've kind of gotten to that point with things that I'm worn down from pressing doctors about my thyroid and getting nowhere, don't want to do it with this one too if it's not going to be worth it.

 

Thanks in advance! 

[Jmg]

On 8/9/2016 at 11:26 PM, TRex8 said:

I am wondering if anyone has had this experience and is something I should continue to pursue? Or if considering the information I've laid it is probably the case that Celiac is not to blame for whatever is going on and maybe I just have some kind of intolerance related to my hashimoto's as I'd originally suspected.  

Hi and welcome

Many, myself included, have had similar experiences. It's very common for people to eliminate gluten as a trial, to then discover their health improves and then when they try to get a concrete diagnosis they test negative.

Is it celiac? Only a doctor can diagnose that, but your hashimotos automatically increases the chances you have other auto immune issues and you do react to the diet, so.... maybe!

Having tested negative you can either go for a gluten challenge and further testing, or decide that your body's reaction is sufficient for you and exclude gluten yourself. There are pros and cons to each of those positions, one you have to decide for yourself.

There's some hopefully useful info here on diagnosis and symptoms:

The cough sneeze is more allergic reaction than intolerance I think , but personally they seem to go along. I will sneeze in a bakery section of a supermarket for instance despite negative test for wheat allergy. 

The point about intolerance however is, as you have discovered, even a tiny amount of cross contamination can be enough to spark a reaction. As you progress on a gluten-free diet many people get more sensitive to small amounts.  So there's a bit of work involved if you want to eradicate all the hidden sources. There's lots of help and advice available here so don't be afraid to ask.

Best of luck!

[Fundog]

Hi.  There are several people on here who are self diagnosed, for different reasons (I'm one of them).  There is also such a thing as non-celiac gluten sensitivity.  As for me, I still waffle between saying I have celiac and NCGS.  All I know is, bad things happen when I eat stuff with wheat or gluten in it, so I avoid.  Mostly I tell people I have a wheat allergy, which is true, and something they understand.

 

[ironictruth]

On 8/9/2016 at 6:26 PM, TRex8 said:

Hi All- new here and new to all of this.

Quick info: 

I have hashimoto's disease and was hoping that trying gluten free might help with some ongoing symptoms that have not been relieved by levothyroxine and liothyronine (synthroid and cytomel). Well- one my main symptoms has been weight gain and an inability to lose weight and in the past couple of months since reducing gluten I've lost 30 pounds without really any other change to my diet/exercise. In the past month I've done my best to remove it completely (using apps etc. to scan my food) but since I am new at it there have of course been some misses on things that it is in and times that I've fudged it thinking it wouldn't matter. 

Additionally, I've always struggled with GI issues on and off. There have been times where I've seen the GI doctor for frequent diarrhea and mid-stomach pain without anything being resolved in terms of diagnosis, and then periods where I haven't had as much issue with these things. 

Since going gluten free I was feeling things were more regular, but having some out of town visitors and eating out more led to less meticulousness on my part. I was still getting gluten free items but not checking all the time if say fries were not coated in something, etc. and noticing more stomach upset and sometimes a cough/sneezing/nose congestion- which has also been an issue for me (I don't know if this is typically something that goes with Celiac or something else entirely, but something I've noticed when I eat often nonetheless).

Anyway, I saw my regular doctor and mentioned this all to her and she did the bloodwork for Celiac, which came back negative. I've read that if one has been on a gluten free diet for 2+ weeks it can lead to inaccurate test results. I am wondering if anyone has had this experience and is something I should continue to pursue? Or if considering the information I've laid it is probably the case that Celiac is not to blame for whatever is going on and maybe I just have some kind of intolerance related to my hashimoto's as I'd originally suspected. Either way I surely have seen a benefit from eliminating gluten and my body has an issue with it, I would just prefer to know if it may still be Celiac that is causing GI and other gluten related problems for me!

I've kind of gotten to that point with things that I'm worn down from pressing doctors about my thyroid and getting nowhere, don't want to do it with this one too if it's not going to be worth it.

 

Thanks in advance! 

My sibling always had negative bloodwork with positive biopsy for celiac. I had only weak positive DGP IGA twice which went negative quickly on the gluten-free diet and I was not even adhering that well to the diet. My thyroid ultrasound indicated Hasi's but my thyroid levels and antibodies were normal. My endo said the gluten caused the inflammation and we need to repeat the ultrasound after a strict diet for a period.

I think the body goes nuts and starts attacking other areas. I can only imagine how much we do not know about how any of this works. 

I can tell you my biopsy was negative 7 months ago after a short gluten challenge. I was not good on the diet this last 7 months by avoiding cc and now have stomach pain, nausea, and dropped a quick 5 lbs. Plus other issues. Pretty sure if they repeated it now it would show. 

Where do you live? Can you see a specialist at a celiac center? 

Did you get the genetic test?