Exposure To Wheat For Accurate Tests

[toponder]

Hello.

I have suspected celiac or at least a wheat intolerance for many years. Past celiac blood tests are always negative but that may be due to me avoiding wheat/gluten fairly diligently.

I am scheduled to get both celiac blood tests and a colonoscopy in late October.

Question: what is the minimum amount of time I have to eat wheat products before these tests so that both would show evidence of celiac if I have it, both in the blood test and intestines.

I'm hoping it's less than a week (hate the symptoms I get), but wanted to check - figured the people here would know.

Thank you.

[tarnalberry]

three slices of bread a day for about three months.

I've heard some folks say 6-8 weeks, but you're hoping damage occurs quickly in that case, and it's impossible to know for sure, regardless of symptoms, what is happening to the intestinal villi.

[ravenwoodglass]

Yea you need to go back on a full gluten diet for about 3 months to get the best chance of a postive on testing. And even after that you still run the risk of a false negative.

IMHO if you react strongly to gluten and are dreading this challenge because of how sick you will be you alreay have your answer. If you do decide to challenge for testing make sure you keep your doctor informed of your reactions. If they are severe some doctors will stop the challenge and diagnose based on your symptoms and the relief you had from the diet.

[toponder]

Thank you tarna and raven. Wow, Raven you've sure gone through a lot of suffering, sounds like much of it from celiac. Sorry to hear that. Was your mother's the celiac cancer in the colon?

My symptoms are not that dramatic, but I still don't want to go through 3 months and then still get a false negative. I talked to the celiac organization today and they suggested the genetic test for DQ2 and DQ8, which would preclude the need for the diet, from Prometheus labs. About $500 though - I have to check if my insurance will cover some of that. They also told me the lower intestines viewed during the colonoscopy would not be helpful and that I would need an upper endoscopy anyway. So cancelling the colonoscopy (just turned 50 and no other risk factors, so it can wait a while)...

Yea you need to go back on a full gluten diet for about 3 months to get the best chance of a postive on testing. And even after that you still run the risk of a false negative.

IMHO if you react strongly to gluten and are dreading this challenge because of how sick you will be you alreay have your answer. If you do decide to challenge for testing make sure you keep your doctor informed of your reactions. If they are severe some doctors will stop the challenge and diagnose based on your symptoms and the relief you had from the diet.

[ravenwoodglass]

Thank you tarna and raven. Wow, Raven you've sure gone through a lot of suffering, sounds like much of it from celiac. Sorry to hear that. Was your mother's the celiac cancer in the colon?

My symptoms are not that dramatic, but I still don't want to go through 3 months and then still get a false negative. I talked to the celiac organization today and they suggested the genetic test for DQ2 and DQ8, which would preclude the need for the diet, from Prometheus labs. About $500 though - I have to check if my insurance will cover some of that. They also told me the lower intestines viewed during the colonoscopy would not be helpful and that I would need an upper endoscopy anyway. So cancelling the colonoscopy (just turned 50 and no other risk factors, so it can wait a while)...

The problem with the genetic tests are that usually they only test for the 2 genes you mentioned. However there have recently been 7 more genes that have been recognized as being associated with gluten issues. I, thankfully, didn't have gene testing done until 5 years after I was diagnosed. I did it because my blood and biopsy diagnosed DD had been retested when she went to college. She was told the original diagnosis, which is the 'gold standard' diagnosis was false because she didn't have the genes. That prompted me to test and I found I didn't have either of the 2 US recognized genes either. My genes are celiac related genes in the Far and Middle East but not considered to be celiac related here. At least not until recently. Do not rely on just gene testing for diagnosis. They are a valuable aid in the diagnosis but are not diagnostic in themselves. If you do want to do gene testing I would reccommend using Enterolab. They can also check for antibodies in your stool and if you haven't been gluten free for very long you don't have to do a challenge. Enterolab tests for more of the celiac related genes than the other lab. In the long run though your body knows the answer in most cases. If eating gluten makes you ill and avoiding it takes care of the issues then you have your answer from the best 'expert' there is. Your own body.

As far as the impact on my body goes it appears that all of the issues were directly related to gluten. The ones that did not fully resolve were organs that had been impacted for too long to achieve a total remission. I am now healthier in many ways than at any point in my life. I haven't even had a cold or virus now in almost 7 years and the only 'illness' I have suffered from has been when glutened. I am extremely senstive to gluten but now after being gluten free for so long that only happens once or maybe twice a year if I get a bit careless about checking something new.

[bahrbdoll]

The problem with the genetic tests are that usually they only test for the 2 genes you mentioned. However there have recently been 7 more genes that have been recognized as being associated with gluten issues. I, thankfully, didn't have gene testing done until 5 years after I was diagnosed. I did it because my blood and biopsy diagnosed DD had been retested when she went to college. She was told the original diagnosis, which is the 'gold standard' diagnosis was false because she didn't have the genes. That prompted me to test and I found I didn't have either of the 2 US recognized genes either. My genes are celiac related genes in the Far and Middle East but not considered to be celiac related here. At least not until recently. Do not rely on just gene testing for diagnosis. They are a valuable aid in the diagnosis but are not diagnostic in themselves. If you do want to do gene testing I would reccommend using Enterolab. They can also check for antibodies in your stool and if you haven't been gluten free for very long you don't have to do a challenge. Enterolab tests for more of the celiac related genes than the other lab. In the long run though your body knows the answer in most cases. If eating gluten makes you ill and avoiding it takes care of the issues then you have your answer from the best 'expert' there is. Your own body.

As far as the impact on my body goes it appears that all of the issues were directly related to gluten. The ones that did not fully resolve were organs that had been impacted for too long to achieve a total remission. I am now healthier in many ways than at any point in my life. I haven't even had a cold or virus now in almost 7 years and the only 'illness' I have suffered from has been when glutened. I am extremely senstive to gluten but now after being gluten free for so long that only happens once or maybe twice a year if I get a bit careless about checking something new.

so, which do you think would be best - genetic from entero lab or Dr. if they can do it?

[toponder]

Hi again : )

I cancelled the colonoscopy for now, but thinking of rescheduling even though I am not going to go through 3 months of wheat exposure.

I just got my last blood test results back and two things stood out: A quite low ferritin of 17 (this keeps showing up - even though iron levels are ok) and gliadin antibodies (IGA) of 11, out of range to the upside - even though I've had virtually zero gluten for about a year now. My Dr. said most "normal" people he tests show zero for this.

So I'm thinking the low ferritin may be indicative of some sort of chronic intestinal bleeding which is rarely good. I already asked my GI Dr about leaky gut syndrome (which I thought would also explain some of the other strange auto-immune symptoms I've had for years) and he scoffed, saying there is no such thing - it's not real. There isn't any good explanation for the ferritin - it's common with those with intestinal bleeding or women with heavy periods. And I guess I have enough evidence with the gliadin and symptoms to just say away from gluten forever.

I will try to get the GI Dr. to do an upper as well while I'm under since I know if there is any gluten evidence it will likely be in the upper.

Any thoughts?

Thanks

The problem with the genetic tests are that usually they only test for the 2 genes you mentioned. However there have recently been 7 more genes that have been recognized as being associated with gluten issues. I, thankfully, didn't have gene testing done until 5 years after I was diagnosed. I did it because my blood and biopsy diagnosed DD had been retested when she went to college. She was told the original diagnosis, which is the 'gold standard' diagnosis was false because she didn't have the genes. That prompted me to test and I found I didn't have either of the 2 US recognized genes either. My genes are celiac related genes in the Far and Middle East but not considered to be celiac related here. At least not until recently. Do not rely on just gene testing for diagnosis. They are a valuable aid in the diagnosis but are not diagnostic in themselves. If you do want to do gene testing I would reccommend using Enterolab. They can also check for antibodies in your stool and if you haven't been gluten free for very long you don't have to do a challenge. Enterolab tests for more of the celiac related genes than the other lab. In the long run though your body knows the answer in most cases. If eating gluten makes you ill and avoiding it takes care of the issues then you have your answer from the best 'expert' there is. Your own body.

As far as the impact on my body goes it appears that all of the issues were directly related to gluten. The ones that did not fully resolve were organs that had been impacted for too long to achieve a total remission. I am now healthier in many ways than at any point in my life. I haven't even had a cold or virus now in almost 7 years and the only 'illness' I have suffered from has been when glutened. I am extremely senstive to gluten but now after being gluten free for so long that only happens once or maybe twice a year if I get a bit careless about checking something new.