Gluten-Free And Having Blood Tests In A Month How Do I Avoid A False Negative!?

[cszymanski12]

I have been fighting this journey for a couple years now and after all the numerous doctors the one I have finally has a brain (at least one that comprehends this disease).... However, it took my allergist to push him to get to me getting currently diagnosed with Gluten Intolerance. Well my doctor is not the smartest, because why wouldnt he have just done the celiac blood tests etc. before I started my gluten free diet when he diagnosed me with GLuten Intolerance after that test. Im having a biopsy done of my skin from the dermatologist that im going to see who is thankfully been recommended to me and has experience with being able to properly diagnose the skin conditions that celiacs have. At that time I am having the blood tests done, because he cant read a medical record to see that they never did the blood test at the first GI only the biopsy which was only one and screwed me over.

I am having this done in almost a month on May 9th. I much more educated on everything since I have vigorously researched, bought books, and of course all the great help on here. I know that being gluten-free can cause false neg on your blood tests and the only way is to not take the test or go back on gluten before testing. My question is how long before I have this done do I have to go back to gluten??? Also I was told and read to eat like 6 pieces of bread a day until the day of testing is that correct or what should I eat??? I dont want to go back on the gluten becasue first of all i have the diagnosis i have already and i dont want to put myself through that its awful I never want to feel like that again. I felt like I was going to heal over and die on so many days. However, I could be full blown celiac and I know its important to make sure to officially know that you are full blown or just intolerant because it can be dangerous. So I am torn between choices here.

I dont think that my skin condition is DH but i could be wrong but my rashes are just unbearable. However, I know that would be an auto confirmation if it was. I also know that of course the treatment is the same for both. But they are still different and its not like I have all the tests done and they just keep coming back neg no matter what. THen i could prob just leave my diagnosis where it is. I understand its my choice but i just dont know what to do.

I know there are other options I was told I could do the genetic testing and when I was reading it also said that its non invasive. However, how do I go about getting my doc to do it??? I know theres other options too but I just am so lost in what is best. I love how the gluten-free has helped my life start to come back together. I know that the skin stuff still needs to be figured out and I need to get the hang of being gluten-free and realizing all the little things I need to be careful of and watch the cosmetics issue and shampoo and all that. Im getting better each week even though I have made several mistakes but just learn from them and write down not to eat that. I still dont feel too well but I have a feeling its because it takes time as I have learned from reading and the little mess ups make an impact. Also the more gluten-free i go the better ill be most likely. But if i am a full blown celiac is it possible thats why Im getting so sick when I have a mess up??? Because I get just really sick afterwards and usually its for a whole day after. Now, if its all dependent upon how much adn wat is in the food. But I would of course worry if I am full blown celiac beyond being gluten intolerant then im actually hurting myself when im making mistakes.

I at least am having the skin biopsy, but as far as the blood tests any thoughts on what to do should i do it or pick a diff route??? If so what and how soon should I go back on gluten??? I can live with being gluten intolerant because it is very similar with the exception of its few diff from full blown celiac. We all know there are so many diff variations to how bad u may be. Partial atophy or its DH which could be less GI more skin, patchy flattened villi etc. So I just want to have that for sure as to cross of my list full blown or then my diagnosis would change. Ive been having a rough too weeks so Im really sorry for just ranting but I have to get it out and no one else understands for the most part. I am open for any helpful tips, or ideas!!! I know this takes years to become an expert so the more I learn the better.

Thanks!

[zimmer]

I have been fighting this journey for a couple years now and after all the numerous doctors the one I have finally has a brain (at least one that comprehends this disease).... However, it took my allergist to push him to get to me getting currently diagnosed with Gluten Intolerance. Well my doctor is not the smartest, because why wouldnt he have just done the celiac blood tests etc. before I started my gluten free diet when he diagnosed me with GLuten Intolerance after that test. Im having a biopsy done of my skin from the dermatologist that im going to see who is thankfully been recommended to me and has experience with being able to properly diagnose the skin conditions that celiacs have. At that time I am having the blood tests done, because he cant read a medical record to see that they never did the blood test at the first GI only the biopsy which was only one and screwed me over.

I am having this done in almost a month on May 9th. I much more educated on everything since I have vigorously researched, bought books, and of course all the great help on here. I know that being gluten-free can cause false neg on your blood tests and the only way is to not take the test or go back on gluten before testing. My question is how long before I have this done do I have to go back to gluten??? Also I was told and read to eat like 6 pieces of bread a day until the day of testing is that correct or what should I eat??? I dont want to go back on the gluten becasue first of all i have the diagnosis i have already and i dont want to put myself through that its awful I never want to feel like that again. I felt like I was going to heal over and die on so many days. However, I could be full blown celiac and I know its important to make sure to officially know that you are full blown or just intolerant because it can be dangerous. So I am torn between choices here.

I dont think that my skin condition is DH but i could be wrong but my rashes are just unbearable. However, I know that would be an auto confirmation if it was. I also know that of course the treatment is the same for both. But they are still different and its not like I have all the tests done and they just keep coming back neg no matter what. THen i could prob just leave my diagnosis where it is. I understand its my choice but i just dont know what to do.

I know there are other options I was told I could do the genetic testing and when I was reading it also said that its non invasive. However, how do I go about getting my doc to do it??? I know theres other options too but I just am so lost in what is best. I love how the gluten-free has helped my life start to come back together. I know that the skin stuff still needs to be figured out and I need to get the hang of being gluten-free and realizing all the little things I need to be careful of and watch the cosmetics issue and shampoo and all that. Im getting better each week even though I have made several mistakes but just learn from them and write down not to eat that. I still dont feel too well but I have a feeling its because it takes time as I have learned from reading and the little mess ups make an impact. Also the more gluten-free i go the better ill be most likely. But if i am a full blown celiac is it possible thats why Im getting so sick when I have a mess up??? Because I get just really sick afterwards and usually its for a whole day after. Now, if its all dependent upon how much adn wat is in the food. But I would of course worry if I am full blown celiac beyond being gluten intolerant then im actually hurting myself when im making mistakes.

I at least am having the skin biopsy, but as far as the blood tests any thoughts on what to do should i do it or pick a diff route??? If so what and how soon should I go back on gluten??? I can live with being gluten intolerant because it is very similar with the exception of its few diff from full blown celiac. We all know there are so many diff variations to how bad u may be. Partial atophy or its DH which could be less GI more skin, patchy flattened villi etc. So I just want to have that for sure as to cross of my list full blown or then my diagnosis would change. Ive been having a rough too weeks so Im really sorry for just ranting but I have to get it out and no one else understands for the most part. I am open for any helpful tips, or ideas!!! I know this takes years to become an expert so the more I learn the better.

Thanks!

I'm no expert - new to this and still reading and absorbing all the information. What I have learned for sure is that you may never get a black-and-white, yes-or-no answer. If you feel better not eating gluten, the stop eating it. 100%. There is no middle ground.

Personally, I could not go back to eating gluten for a challenge to try to get a test result. I know that it is a poison to my body and intellectually I would never be able to put it in my mouth again. I don't have many symptoms at all, and just got lucky to have a doc that suspected celiac who tested me. My symptoms have cleared up, and also some that I had no clue were related to gluten have gone away.

The skin test is a good idea. If it is DH then that will give you a positive result. But if is is not DH, then it still could be celiac-related like eczema or something.

I decided to go gluten-free and get on with life and never look back. I don't want that piece of paper anyway - just good grounds for an insurance company to deny coverage or benefits.

[cszymanski12]

I'm no expert - new to this and still reading and absorbing all the information. What I have learned for sure is that you may never get a black-and-white, yes-or-no answer. If you feel better not eating gluten, the stop eating it. 100%. There is no middle ground.

Personally, I could not go back to eating gluten for a challenge to try to get a test result. I know that it is a poison to my body and intellectually I would never be able to put it in my mouth again. I don't have many symptoms at all, and just got lucky to have a doc that suspected celiac who tested me. My symptoms have cleared up, and also some that I had no clue were related to gluten have gone away.

The skin test is a good idea. If it is DH then that will give you a positive result. But if is is not DH, then it still could be celiac-related like eczema or something.

I decided to go gluten-free and get on with life and never look back. I don't want that piece of paper anyway - just good grounds for an insurance company to deny coverage or benefits.

Thank you, and I agree completely with you on the idea that I dont want to put myself through it all again. I had a grocery list of symptoms and systems that were affected and I was so sick. I have the diagnosis of gluten intolerance by my GI right now which is still better than not having the doc diagnose me at all and having to self-diagnose. However, I wish he would have been a little smarter and tested me for celiac blood test wise before he did this so I wouldnt have been placed with this burden of choice. I Feel maybe i should suggest having the non invasive genetic testing done which is a good option but im not sure exactly if that will give me confirmation directly for celiac or not??? If anyone has experience and can help me understand that, that would be great. I have enjoyed eating and living my life little by little thanks to gluten-free, even though im still adjusting and im still not too well but I know it takes time to heal. But I understand that my doctor has pretty high suspicion of celiac but he decides this all at the wrong time. I agree it is better under some aspects to have that on paper diagnosis for celiac so you can have the insurance help. But i have the gluten intolerance diagnosis hence far so that at least will stand for something to my insurance. My mother is getting tested for celiac, but if she tests positive yes i have a pretty good chance of being full blown celiac but thats not always the case. I could just be not full blown celiac, however as we know that can turn into full blown still.

I think as mentioned its ultimately the idea of is it worth it to put myself through that just for that paper confirmation? I myself refer to gluten as a "poison" to my body which im sure many of us do. THe only thing that sits in my mind is that if its not 100% sure to rule out full blown celiac and I stay with the diagnosis of gluten intolerant and dont test and I really am full blown celiac I could still potentially be causing pain to myself. The skin biopsy should help and the genetic testing, even if it is the eczema skin condition celiacs have which is of course diff because it is a severe form and I have heard it misdiagnosed before. I guess Im just really torn between the choices here because I dont want to hurt my body for a test that per say does come back neg I did it for nothing. So I would rather do the tests that are the other options that i can count on and that will not have to allow me to harm my body. This whole thing has been bothering me and if theres any advice or help I can get or that anyone else has please share, the opinions on here I trust the most....

I am glad that at least your diagnosis came through relatively quickly and you didnt have to go through the common journey many have to go through. Its also good because then you can start healing your body now and getting used to the new life style. Thanks for the advice and good luck with everything!