Gluten Challenge

[lizzy]

HI all

after some long thoughts of doing this i have decided to go back on gluten after 3 years of being free of it so i can go to my doctor and do the tests to get the right diagnose. how long wil i have to eat it to show up again in my blood work?

so far i have only had a small amount of it, thought i would take it a little at a time than alot all at once. and so far i feel ok . liz

[RiceGuy]

Some say it can take 6 weeks. Others say it can take far longer. Thing is, it will have to cause enough damage to show up in the biopsy, and of course they have to check the right area to see the damage. However, if you can be sure that your doctor will give a diagnosis based only on blood work, it might take less time since it would be a matter of detecting the antibodies. Plus it could mean not having to eat so much gluten either. But, I've seen many posts suggesting that doctors still rely on the biopsy as the "gold standard".

If you go through with it, I hope you get the right diagnosis without getting too sick!

HTH

[lizzy]

Some say it can take 6 weeks. Others say it can take far longer. Thing is, it will have to cause enough damage to show up in the biopsy, and of course they have to check the right area to see the damage. However, if you can be sure that your doctor will give a diagnosis based only on blood work, it might take less time since it would be a matter of detecting the antibodies. Plus it could mean not having to eat so much gluten either. But, I've seen many posts suggesting that doctors still rely on the biopsy as the "gold standard".

If you go through with it, I hope you get the right diagnosis without getting too sick!

HTH

THANKS for your reply. i now live in england and they do it more by blood test than the other cos of the cost. a friend of mine just had to do the same thing to get a result , if i think that i am getting too sick back on the diet i will just simply stop it and get back on the gluten free diet.but so far for i dont feel any different but i guess time will tell liz

[cruelshoes]

From the University of Chicago Celiac Disease program.

Open Original Shared Link

How long do I need to be eating gluten before I am tested for celiac disease?

This is not an easy question to answer. Most people believe, or are told that they need to eat gluten for a few days (or up to a week) before a blood test or a biopsy, and this is incorrect. The true answer depends on how long the individual has been avoiding gluten. How much gluten to eat depends on the age of the individual who is being tested. The information provided here is a general rule, there are many specifics that come into play, so its best to talk with a knowledgable physician about your particular situation.

First: If a patient has avoided gluten for six to 12 months (or more) it is advisable to consider an HLA gene test before a gluten challenge. The HLA gene test will help determine if the patient is even in the risk group for celiac disease. (Only 1/3 of the US population have the genes for celiac disease.) After 6-12 months, it can be difficult to obtain a diagnosis of celiac disease after a gluten challenge, which is why this step is advisable.

Patients who have been on a gluten free diet for less than six months can consider a gluten challenge under a physician's supervision. A challenge would typically require an adult or a child to eat some gluten for four to eight weeks. For some, a twelve week challenge could be required but no challenge should last more than 12 weeks in children. The patient would eat a specified amount of gluten every day.

Many patients are concerned about participating in a challenge. Medical research shows that a limited challenge of this sort provides a greater medical benefit when it leads to a correct diagnosis of celiac disease. The challenge would need to be maintained if a positive antibody test result is received, because the biopsy procedure also depends on the presence of an autoimmune response.

For children, eating a saltine cracker each day would be enough gluten to conduct a challenge and for adults, a slice of bread a day would be adequate. The challenge would need to occur for six to eight weeks before the test in order for it to be accurate.

Probably a few months at least, and then you may or may not get positive results. Good luck on your challenge. I'm not sure I would be able to do it, but I hope it gets you the answers you need.

[Ursa Major]

You are obviously gluten intolerant. You don't know if you had villi damage before you went gluten-free. But if you did, it is healed by now. If you have 'classic' celiac disease, you will destroy your villi again by doing the gluten challenge, inevitably resulting in illness and malabsorption of essential nutrients. But even if your villi won't be affected, you will do damage.

Non-celiac gluten intolerance is more likely to cause damage to the nervous system and brain.

Either way, you might do irreversable damage by doing a gluten challenge. You might also trigger other autoimmune diseases, depression, mood swings, other allergies and intolerances and a host of other issues.

Actually, the blood test will only be positive AFTER your villi are quite damaged, because the antibodies won't be in the blood until you have leaky gut due to the damage.

Quite a few adults here have done the challenge, some for as long as three months, and then ended up with negative blood work and a negative biopsy anyway, after making themselves ill for all that time. It was all for nothing.

Anyway, I just wanted to throw out all those things for you to consider. It is still your choice to go ahead if you wish, nobody can really stop you. I hope you make the decision that is right for you.

[lizzy]

Hi all

well i have done 3 days on a small amount of gluten and so far my lymph nodes in the base of my head near my skull are swollen and sore and i think i have one under my arm pit too as its really tender. i am going to leave the gluten alone today to see if they go down, i cant believe after such a small amount my body would react so quickly and if so i may chuck in the towel early. like you say whats the point of making oneself sick ,just to get a point over. thanks for all your help liz

[nora-n]

the article says a slice of bread is enough, but that is not enough according to another article.

There it says at least 0,3 grams of gluten per kg weight. If one weighs 70 kg, then one needs 21 grams of gluten. That is several slices of bread a day.

They think that 90% of the protein in wheat is gluten.

I weighed some bread at home and read the labels, and it says (for this brand I happened to check out) that 100 gram had 10,3 grams of protein and Icounted the slices in a loaf of 600 grams--20 slices. that would be 7 such slices for 21 grams of protein. But only 90% is gluten so one would have to eat another 0,7 slice to get the 21 grams gluten.

Just to illustrate how much one ould need for a positive test.

(mine was negative after 5 weeks. They did not do a blood test after the five weeks. I sed having symptoms after six weeks)

https://www.celiac.com/articles/12/1/How-lo...gful/Page1.html

[bailey4]

Non-celiac gluten intolerance is more likely to cause damage to the nervous system and brain.

Hi Can you tell me what you mean by this. This is all new to me and trying to get my arms around everything is tough. Thanks

[CCM]

Non-celiac gluten intolerance is more likely to cause damage to the nervous system and brain.

(Quote from earlier post)

Hi Can you tell me what you mean by this. This is all new to me and trying to get my arms around everything is tough. Thanks

Yes, I also would like to know who or where I can read specifically about non-celiac gluten intolerance. My celiac blood test and biopsy were negative, but the diet is exactly what I need and my symptoms are more nervous system and neurologically based. However, I do still have basic GI symptoms (bloating, gas, constipation) and my understanding of this problem is that it is all ultimately due to a "leaky gut" which indicates some basic kind of intestinal damage to me.

I realize that this is a celiac-specific forum, but if there some place where we can learn more about non-celiac gluten intolerance, please share!!

I have been considering seeing a genetic counselor about gene testing, but I just read online that researchers have announced in the past month seven more genes associated with celiac disease (I would think this could go a long way toward accounting for all these "non celiac" gluten intolerance cases).

[gfpaperdoll]

I am sure Ursa will get back to you soon.

Many of us on here are ONLY gluten intolerant, because we do not have DQ2 or DQ8 genes. I am double DQ1, for instance. This is only the medical definition of celiac as they think they know all about celiac. when in fact they know almost nothing...

A good place to start is by reading the book "Dangerous Grains".

Most of us know that if you include people with gluten intolerance that more than 30% of the American population has a problem with gluten. But you are not going to hear this on the news anytime soon...

We also know that if you have the "gluten intolerant" genes that you most likely will get a host of problems, with a lot of those being neurological, before the IBS or intestinal damage starts showing up. We are also prone to have additional food intolerances.

You can do an informal survey on here of people's symptoms & the genes that they have & it pretty much falls in line... You got DQ2 or DQ8 you get intestinal problems right away - of course if you only have one of those & a gluten intolerant gene - then you most likely will have a smattering of neurological or other allergies.

I had a friend that had Crohn's & I talked her into getting tested thru Enterolab, well she had a DQ2 gene AND a DQ8 gene - she was livid with her doctors, she was better in 5 days after going gluten-free & several years later still no more Crohn's. She can also eat all the other grains & is healthy & fit - no neurological problems or any other allergies...

I have another friend biobsy positive with severe osteoporosis & she is double DQ1...

My sister is double DQ1 & was diagnosted via blood test before she tested thru Enterolab for genes etc.

So this is just to say that you can test positive & not have the genes. But if you are unlucky enough to only have the gluten intolerant genes, you might be half dead & no one can figure it out!!

The really sad part is that doctors are telling people that their blood test is negative & that they do not have the genes so no need to eat gluten-free, that celiac is not their problem. A LOT of people are suffering because of this...

[CCM]

Wow!! My jaw dropped as I was reading your post, gfpaperdoll!

I have not done the research needed on the genetic issues of celiac yet. I had no idea that particular genes predisposes a person to specific GI symptoms or to neurological symptoms. I guess I would really like to learn more about the differences between the research being done in the US and in Europe. I guess the additional 7 genes I read about recently came out from European studies.

I have the Dangerous Grains book on my shelf right now, just got it from the library, trying to figure out whether to read it before or after The Omnivore's Dilemma and all the gluten-free cookbooks that will be due back to the library soon!

Does anyone know how Enterolab does the gene tests? Only for the two celiac genes or do you find out "everything"? keep hearing about folks' hesitancy to get these kinds of tests done for fear of discrimination by

health insurance companies for one.

At least my GI said I could have a sensitivity to wheat, that I could try omitting it from my diet; but he didn't feel I need to see a dietician and he threw out a comment on the way out the door that I should look into a possible sensitivity to chemicals (as in pesticides on the wheat) but he didn't say how! I have been gluten-free since January, but I have not decided whether I should see him for a follow up. I am trying another GI recommended by folks in the local celiac support group here.