How Long?

[Lovey25]

How long can gluten be out of your system for you to still get a positive test result? I am convinced beyond a doubt that I have a gluten problem due to my family history and personal disease history and my "unexplainable" symptoms, and also my results once being off (two and a half months now). Also, I accidentally ingested gluten the other night and got severe intestinal distress and bad bad problems that have to be legit.

But I was never formally diagnosed because once I learned that my family history plus Hashimoto's was linked to Celiac, I went off it IMMEDIATELY -- like, the next day. So I never made it to the Doctor.

So I'm wondering if I would still test positive for the intolerance after being off it for 2 1/2 months, and also after my episode the other day with ingestion.

What do you all think??

[sbj]

I would say that you would not be able to trust a false result. What's the point in testing anyway?

Some people test negative rather quickly and for others it takes longer. I believe intestinal damage would take longer to resolve than blood. I am scheduled for a followup blood test 6 months after going initiallly gluten free.

[Lovey25]

I would say that you would not be able to trust a false result. What's the point in testing anyway?

Some people test negative rather quickly and for others it takes longer. I believe intestinal damage would take longer to resolve than blood. I am scheduled for a followup blood test 6 months after going initiallly gluten free.

Well, although I know my body (and health history, and family health history) well enough at this point, I would like to have something in paper for doctors and also for friends and family who are non-believers. Also, I'm active in other online discussions about Hashimoto's and I've told them about the link to Celiac, but having actual proof that they are related (firsthand) would be able to help other people too.

[sbj]

I only ask because many (if not most) on this forum don't trust doctors and don't care about their opinion or even want their diagnosis.

I, OTOH, have have always urged those who suffer to get the blood panel and to get the endoscopy before going gluten free for precisely some of the reasons you mention. I'm really not qualified to answer your question about what your results might look like now that you have been gluten free. Many doctors don't like having to put their patients through the misery of a gluten challenge and this is why they urge a celiac diagnosis in the first place. I suggest you speak with a gastroenterologist about these questions. I wish you the best of luck and would also remind you to test for vitamin/mineral/nutritional deficiencies, get a complete bood count, and get a bone density scan. Salud!

[Gemini]

Well, although I know my body (and health history, and family health history) well enough at this point, I would like to have something in paper for doctors and also for friends and family who are non-believers. Also, I'm active in other online discussions about Hashimoto's and I've told them about the link to Celiac, but having actual proof that they are related (firsthand) would be able to help other people too.

May I ask you if you yourself are comfortable with the knowledge that you have a problem with gluten? I ask because the ONLY person that matters in your decision making is you. Why would you care what doctors think about the way you were diagnosed or what others, whom you refer to as non-believers, think?

I was diagnosed through blood work and dietary response but declined the biopsy. I changed primary care doctors after diagnosis and, at first, she wanted to see a biopsy report before she would totally believe the Celiac diagnosis. Don't get me wrong, I like this doctor and she has been very kind about it but she still doubted me because there was no pretty picture of my trashed villi. I looked at her and very nicely said it didn't matter to me what the medical profession thought about it. I then showed her my blood work from the other doctor and told her my story. After seeing the test results and hearing what I had to say, she changed her mind and honors the diagnosis that I had. It just took me a few minutes of time to show her that a biopsy was not always necessary for diagnosis. She then wanted another one to "see" how I was healing and after some rapid blinking on my part, I again declined. My reasoning? I am now 113 pounds, which is the fattest I have ever been in my entire life. At time of Dx, I was down to 97 pounds and losing weight DAILY. In the 4 years since going gluten-free, every single one of my symptoms has resolved, my color is good, my blood work is all normal for the first time in my adult life and I feel great. If that isn't proof that I have healed nicely, I don't know what the heck is! I will add that if there were any lingering issues that wouldn't heal, I would submit to an endo but there is no need for me personally to have one.

Does it bother me that some may doubt my diagnosis? Absolutely not! If I went to ANY doctor that challenged the fact that I have celiac disease, I would not go back to them and would fear for anyone who did. For friends and family members, I have never had a problem with them believing that I have it but have had tons of trouble getting family to be tested. They are resistant and have been rude to me about it so I don't bother any more. They have every right to kill themselves slowly eating gluten and they won't get much sympathy from me about feeling badly either. Sometimes you have to cut the emotional cord for survival and not look back. Sad, but what can you do?

To answer your original question, I was gluten-free about 5 days before testing and I failed all blood tests by huge numbers. By the time I got the results from the doctor, I KNEW it was celiac disease because it took only 3 days being gluten-free for the Big D to stop and not come back. Never doubt yourself and do not bother with those who are doubters because what they think on this matter truly does NOT matter one bit. You can try for an official diagnosis but what if your testing comes back negative?

It could but it doesn't mean you do not have celiac disease/GS. Something to think about, along with being miserable on a long gluten challenge.

I also have Hashi's, which has improved dramatically since going gluten-free. For some reference material to show others, look at some of the links on the home page of this website. There are links which refer to all the autoimmune diseases out there that are linked to Celiac. I would also suggest reading Dr. Peter Green's book:

Celiac Disease: A Hidden Epidemic. It also goes into Hashi's and other autoimmune diseases that are much more prevalent with Celiac.

Good luck with your decision making and your health!

[Lovey25]

May I ask you if you yourself are comfortable with the knowledge that you have a problem with gluten? I ask because the ONLY person that matters in your decision making is you. Why would you care what doctors think about the way you were diagnosed or what others, whom you refer to as non-believers, think?

I was diagnosed through blood work and dietary response but declined the biopsy. I changed primary care doctors after diagnosis and, at first, she wanted to see a biopsy report before she would totally believe the Celiac diagnosis. Don't get me wrong, I like this doctor and she has been very kind about it but she still doubted me because there was no pretty picture of my trashed villi. I looked at her and very nicely said it didn't matter to me what the medical profession thought about it. I then showed her my blood work from the other doctor and told her my story. After seeing the test results and hearing what I had to say, she changed her mind and honors the diagnosis that I had. It just took me a few minutes of time to show her that a biopsy was not always necessary for diagnosis. She then wanted another one to "see" how I was healing and after some rapid blinking on my part, I again declined. My reasoning? I am now 113 pounds, which is the fattest I have ever been in my entire life. At time of Dx, I was down to 97 pounds and losing weight DAILY. In the 4 years since going gluten-free, every single one of my symptoms has resolved, my color is good, my blood work is all normal for the first time in my adult life and I feel great. If that isn't proof that I have healed nicely, I don't know what the heck is! I will add that if there were any lingering issues that wouldn't heal, I would submit to an endo but there is no need for me personally to have one.

Does it bother me that some may doubt my diagnosis? Absolutely not! If I went to ANY doctor that challenged the fact that I have celiac disease, I would not go back to them and would fear for anyone who did. For friends and family members, I have never had a problem with them believing that I have it but have had tons of trouble getting family to be tested. They are resistant and have been rude to me about it so I don't bother any more. They have every right to kill themselves slowly eating gluten and they won't get much sympathy from me about feeling badly either. Sometimes you have to cut the emotional cord for survival and not look back. Sad, but what can you do?

To answer your original question, I was gluten-free about 5 days before testing and I failed all blood tests by huge numbers. By the time I got the results from the doctor, I KNEW it was celiac disease because it took only 3 days being gluten-free for the Big D to stop and not come back. Never doubt yourself and do not bother with those who are doubters because what they think on this matter truly does NOT matter one bit. You can try for an official diagnosis but what if your testing comes back negative?

It could but it doesn't mean you do not have celiac disease/GS. Something to think about, along with being miserable on a long gluten challenge.

I also have Hashi's, which has improved dramatically since going gluten-free. For some reference material to show others, look at some of the links on the home page of this website. There are links which refer to all the autoimmune diseases out there that are linked to Celiac. I would also suggest reading Dr. Peter Green's book:

Celiac Disease: A Hidden Epidemic. It also goes into Hashi's and other autoimmune diseases that are much more prevalent with Celiac.

Good luck with your decision making and your health!

Hi Gemini,

Thanks so much for the response!

The reason I would like an official diagnosis of sort is twofold. First, I'm an Aquarius and therefore I have a messiah complex and if I see my friends and family struggling with their health, I'm going to do everything I can to show them "the truth". I know this is a character flaw on my part because people have to work out their own problems. I can give them the knowledge for a time, but they have to decide if their health is important enough to go through with a lifestyle change. And right now, it's pretty clear most people aren't willing to do that; they'd rather be miserable forever.

I have NO DOUBT that Celiac or some sort of gluten intolerance runs in my family, due to the autoimmune disease(s) that have been visible in recent generations. My great Uncle had a goiter, my Grandmother has Graves, I have Hashimoto's, my brother has Dyslexia (which has been linked to autoimmune complications), I have terrible problems with Candida, my Uncle and Grandmother both have Candida, and so many of my family exhibit gluten intolerance (and, if it means anything -- I've got the light/red/blonde hair and blue/green eyes on both sides of my family tree!). Having a legitimate piece of paper to show them would be evidence that food does influence health and theirs would certainly be better if only they stopped eating such and such.

Secondly, I believe strongly in the power of the body to heal itself through natural means, which includes eating things that help the body, instead of cause it to react negatively. I think when things like Celiac and Candida are taken seriously by the medical community, the overall incidence of disease in this country could be much much less. Again, I'm trying to save the world, but... it just seems too important to not try. (This is what makes me go crazy). Although, I completely understand and AGREE with you that most people with these "alternative" illnesses/issues are ignored by the mainstream medical establishment, and therefore, patients/people like us do not care for an official diagnosis from them. I believe in the power of my body to tell me things -- even if they are not acknowledged by an M.D., or even if they contradict popular medical information.

So, yeah, like I said... these are all just character flaws on my part and my need to save the world, one person at a time. Celiac/gluten-intolerance is just too real to have people and doctors ignore it. A piece of paper makes it more legitimate for other people, even though I know my body well enough to say it's 100% true.

Does all that make sense?

[Jenny (AZ via TX)]

For me personally, I'm glad I have an official diagnosis. I had no idea I had celiac or even what it was. I don't think I would have been able to stay gluten free without the diagnosis. I'm pretty sure I would have cheated. For me, I needed the paper that told me I have it. Sad, but true. If I didn't have the dx, I would always be doubting it which in my mind would let me cheat. I didn't realize how bad I felt until I started to feel good. I think I just got used to feeling subpar.

Since being dx'd, I have never cheated, not one teeny tiny bit. It's not worth it to me to go back to where I was.

It's a personal decision whether or not to get an official dx.

[Gemini]

Hi Gemini,

Thanks so much for the response!

The reason I would like an official diagnosis of sort is twofold. First, I'm an Aquarius and therefore I have a messiah complex and if I see my friends and family struggling with their health, I'm going to do everything I can to show them "the truth". I know this is a character flaw on my part because people have to work out their own problems. I can give them the knowledge for a time, but they have to decide if their health is important enough to go through with a lifestyle change. And right now, it's pretty clear most people aren't willing to do that; they'd rather be miserable forever.

I have NO DOUBT that Celiac or some sort of gluten intolerance runs in my family, due to the autoimmune disease(s) that have been visible in recent generations. My great Uncle had a goiter, my Grandmother has Graves, I have Hashimoto's, my brother has Dyslexia (which has been linked to autoimmune complications), I have terrible problems with Candida, my Uncle and Grandmother both have Candida, and so many of my family exhibit gluten intolerance (and, if it means anything -- I've got the light/red/blonde hair and blue/green eyes on both sides of my family tree!). Having a legitimate piece of paper to show them would be evidence that food does influence health and theirs would certainly be better if only they stopped eating such and such.

Secondly, I believe strongly in the power of the body to heal itself through natural means, which includes eating things that help the body, instead of cause it to react negatively. I think when things like Celiac and Candida are taken seriously by the medical community, the overall incidence of disease in this country could be much much less. Again, I'm trying to save the world, but... it just seems too important to not try. (This is what makes me go crazy). Although, I completely understand and AGREE with you that most people with these "alternative" illnesses/issues are ignored by the mainstream medical establishment, and therefore, patients/people like us do not care for an official diagnosis from them. I believe in the power of my body to tell me things -- even if they are not acknowledged by an M.D., or even if they contradict popular medical information.

So, yeah, like I said... these are all just character flaws on my part and my need to save the world, one person at a time. Celiac/gluten-intolerance is just too real to have people and doctors ignore it. A piece of paper makes it more legitimate for other people, even though I know my body well enough to say it's 100% true.

Does all that make sense?

If it makes you feel better, I have the same complex that you do! Nothing irritates me more than family members who live in complete and absolute denial about having a gluten problem! My whole family has serious issues and we have more autoimmune problems than most populations of small towns put together but I am now the official pain in the butt of my family because of my endeavor to help them all see the light! My father, at this moment, looks like he is dying of malnutrition and has serious neurological problems, along with spending half his day in the bathroom. His wife is taking him to a neurologist soon to have testing and to see why his memory is so bad. So, once again, I e-mailed the spiel about his symptoms and how I believe he has full blown Celiac and to be sure to tell the neurologist that his daughter (me) is a Celiac with an official diagnosis. And, once again, they never returned my e-mail....not a word. It's very hard to sit by and watch family slowly die of Celiac Disease and then have them NOT validate your attempts to help them. They have actually been extremely rude to me

or just pretend I don't exist anymore. My mother, who has active symptoms and been told she has IBS , actually hung up the phone on me when I excitedly told her my diagnosis and how happy I was to finally have answers and now I knew what was wrong with her too! It is very damaging to the relationship

and is deeply hurtful to me that they reject my help but I have had to accept this, which is very hard. They will die from it eventually but their quality of life right now is pretty poor. BTW.....I had gene testing done also to see which side of the family it came from and I am the lucky recipient of a double DQ2....it's on both sides! Not surprising, as we are English, Irish and Scottish.

On the up side, Christmas of 2007 had me visiting relatives I had not seen for a couple of years and they looked at me and said I have never looked better in my life...that I was actually glowing. They could not believe the difference in me from just going gluten-free! It's too bad they aren't my parents! My mother was in earshot and I said it was the "no wheat glow" and she left the room when she heard that. It's just bizarre, if you ask me so I wish you luck with your family members but don't go crazy if they reject your help. It's been a long road for me to accept this and I haven't completely got there yet. I just cannot understand it and never will. It's just wheat and I truly do not miss it one bit but try to tell them that. So, remember, even with the official diagnosis, they still may not believe you. Denial is a very strange thing!

[gfb1]

Denial is a very strange thing!

i had to laugh when i read your note! my wife's family as nearly 35 people among her first degree relatives and all but ONE have been tested for celiac (gliadin-ab, ttg-ab, endomyial-ab's, etc, etc AND upper gi series/biopsy). its a great pedigree; BUT her brother continues to refuse to be tested or try a gluten free diet -- even in the face of his wife and 2 children testing postive and now being gluten-free. he continues to have bloating, diarrhea, abdominal pain, psoriasis, and lord knows what else -- but, he's not a celiac!! not HIM...

its a good thing my sister-in-law is a bit more rational...

[Lovey25]

If it makes you feel better, I have the same complex that you do! Nothing irritates me more than family members who live in complete and absolute denial about having a gluten problem! My whole family has serious issues and we have more autoimmune problems than most populations of small towns put together but I am now the official pain in the butt of my family because of my endeavor to help them all see the light! My father, at this moment, looks like he is dying of malnutrition and has serious neurological problems, along with spending half his day in the bathroom. His wife is taking him to a neurologist soon to have testing and to see why his memory is so bad. So, once again, I e-mailed the spiel about his symptoms and how I believe he has full blown Celiac and to be sure to tell the neurologist that his daughter (me) is a Celiac with an official diagnosis. And, once again, they never returned my e-mail....not a word. It's very hard to sit by and watch family slowly die of Celiac Disease and then have them NOT validate your attempts to help them. They have actually been extremely rude to me

or just pretend I don't exist anymore. My mother, who has active symptoms and been told she has IBS , actually hung up the phone on me when I excitedly told her my diagnosis and how happy I was to finally have answers and now I knew what was wrong with her too! It is very damaging to the relationship

and is deeply hurtful to me that they reject my help but I have had to accept this, which is very hard. They will die from it eventually but their quality of life right now is pretty poor. BTW.....I had gene testing done also to see which side of the family it came from and I am the lucky recipient of a double DQ2....it's on both sides! Not surprising, as we are English, Irish and Scottish.

On the up side, Christmas of 2007 had me visiting relatives I had not seen for a couple of years and they looked at me and said I have never looked better in my life...that I was actually glowing. They could not believe the difference in me from just going gluten-free! It's too bad they aren't my parents! My mother was in earshot and I said it was the "no wheat glow" and she left the room when she heard that. It's just bizarre, if you ask me so I wish you luck with your family members but don't go crazy if they reject your help. It's been a long road for me to accept this and I haven't completely got there yet. I just cannot understand it and never will. It's just wheat and I truly do not miss it one bit but try to tell them that. So, remember, even with the official diagnosis, they still may not believe you. Denial is a very strange thing!

Okay, your story makes me feel better. Thank you very much for the support and for sharing your story! I appreciate it!!