Eating Gluten For Blood Test?

[Sharon C.]

After breaking out with a rash that I think could be dermatitis herpetiformis, I went to a dermatologist that couldn't diagnose it even with a skin biopsy. The rash has calmed down alot, but I still break out mildly. I found another doctor willing to screen me for gluten intolerance with a blood test, but I have now been strictly gluten free for 4 months- since October. If it wasn't for the rash, I would just stay gluten free and not worry about tests. But I am still breaking out with this rash and I REALLY want to know if I have it or not. My son has it definitely- he had the endoscopy- but I was never thoroughly tested.

So, now that I found someone willing to screen me with the blood test, I don't want to blow it by having low antibody levels. I plan to eat gluten before the blood test. Do I need to eat a lot of gluten? Should I eat something every day for a week? What is the best way to make sure my antibodies will be high enough to be accurate? Thanks!

[Ursa Major]

Sharon, I am sorry to say that you would have to eat a lot of gluten for a lot more than a week, more like four months, to have a chance of getting a positive blood test. You could get very ill, and possibly do yourself permanent damage doing that. Is it really worth it?

If your son is confirmed celiac disease by endoscopy, and you feel better off gluten (and of course, he inherited it from somebody, very likely you), then your rash is likely caused by gluten. If it can be considered officially DH or not, what difference does it make? It can take up to two years on a strictly gluten-free diet for your rash to go away. You need to be patient.

[rez]

Have them biopsy the rash. A gluten challenge is done for the purpose of a biopsy of the small intestine, not blood work. The small intestine shows damage quicker than the blood. You could also have blood work done and if it's postive, then you would have a better idea. If it's negative, it could be false negative. Good luck.

[Ursa Major]

It is true that in order to have positive blood work, you also have to have a damaged intestine first. Meaning, that if your villi have healed in the four months gluten-free, there is no way you'd test positive on the blood work. So, doing that now is useless.

If you really want to know if you have celiac disease, you could still do the test with Open Original Shared Link, it is accurate up to a year after going gluten-free.

Just beware that if you don't order the gene test as well, you won't be able to know if it is celiac disease or gluten intolerance (which is really the same thing, and the treatment is the same, a gluten-free diet).

[FeedIndy]

Hijacking here for just a second, I had blood tests run recently that all came back negative (the panel was 4 or 5 tests). My question after reading this is how reliable are they since I've been gluten-lite since my youngest's diagnosis in October. I was gluten free for 2 months while nursing and then I was only eating gluten during some lunches-dinners I cook for the whole family.

I suppose the answer doesn't really matter-I am gluten free now with my girls, but I am struggling with wanting an official diagnosis. Although my doctor recommended gluten free rather than proceeding to biopsy. I guess I am just holding onto the slim chance that our problem isn't celiac disease and maybe someday I'll be able to have pizza again.

[Sharon C.]

Hi-

Thanks for all replies.

I am a little confused now. I keep my son STRICTLY gluten free because I was told and also believe that even one molecule of gluten would release an entire army of antibodies that would then harm his intestines. I was told and believe that even one tiny crumb of contamination would release an entire army of antibodies. How could I eat gluten and release armies and armies worth of antibodies into my system and yet have them be undetectable for up to 4 months? I'm not sure I understand.

I had the rash biopsied. It was inconclusive. There are other things that can also cause autoimmune responses besides the gluten, like cancer and diseases. My rash doesn't follow the exact protocol of DH. My dermatologist was reluctant to say that's what it is because I am missing the obvious blisters that many get. I asked others with confirmed cases of DH if they always get blisters and not all of them do. So, I would hate to give up my search, accept this as DH, when in fact I have something else wrong with me that ends up overlooked.

Maybe I will give the Enterolab a try, but I read that Enterolab diagnoses EVERYONE as gluten intolerant. has anyone ever had a negative Enterolab test?

Thanks Again!

[CarlaB]

One of my daughters had a negative Enterolab test.

It's true that the antibodies have to build up for months before they show up in your blood. The antibodies start in the intestine and you have to have a pretty leaky gut for them to show up in your blood.

Did they biopsy the rash, or the area next to the rash. I've heard it's supposed to be the area next to the rash.

I think you are smart in wanting to know what this rash is from. I had a rash for months and it only went away when I went on antibiotics for my Lyme Disease (yes, in addition to gluten intolerance). I got a postive Enterolab result and a positive dietary response, so I really thought the rash must be DH, but it wasn't. So, keep researching!

[Sharon C.]

Hi!

They biopsied a little red speck and an area near the red speck. I wish they would have taken it from a location that was more affected by the rash, though. They took it from a place that was not as affected. I have it mostly on my calves and ankles, outer elbows and forearms, wrists all symmetric, and also some scattered on my back and a couple on my rear end. It was really bad on my elbows/forearms but that seesm to be clearing up even though I have scars. It is still the worst on my calves and ankles. When I eat something extremely high in salt- these Salt & Vinegar chips sold by Whole Foods market- I know that I can guarantee to set the rash off again because I have done it a few times already eating those chips (iodine).

Well, thanks.

[nora-n]

After breaking out with a rash that I think could be dermatitis herpetiformis, I went to a dermatologist that couldn't diagnose it even with a skin biopsy. The rash has calmed down alot, ............. Do I need to eat a lot of gluten? Should I eat something every day for a week? What is the best way to make sure my antibodies will be high enough to be accurate? Thanks!

Hi Sharon, I have similar issues, daughter diagnosed celiac and I do not tolerate gluten either.

I started baking gluten-free for her and also at the same time went low-carb. (oneandanhalf year ago). I then noticed I got severe reactions at cristmas and other times when there is gluten and cakes with cream. I had avoded all milk for years, bu I did tolerate crem and ice cream. I then asked the doctor if it could be celiac, I had had tests twice before many years ago which were negative. Did some tests an they were negative and got an endoscopy scheduled and went back on gluten. Biopsies negative. I started back on gluten for a week and then some of the stranger symptoms returned and I decided I was gluten intolerant after all.

Off gluten this strange rash/burning sensation in my skin which I had had since 03 constantly, disappeared. And I had started to get nevrological symptoms the fall I had started to bake for my daughter, but they had not progressed and came back after some weeeks on gluten and went away afterwards. My feel "disappeared" and hands started to do that too. And my bowels had been soft for three years.

Now back to the question of how much gluten how long.

I was onn gluten for 5 weeks, and maybe I did not eat enough gluten. I only added gluten powder to home-baked bread which I ate.

Now I read on celiac.com that an expert was intervieved and he said one needed at least 300 mg of gluten per kg per day. If you weigh 70 kg that would be 21 grams. There are about 10 grams gluten in 100 gram bread but the bread we have here has less I think (I am in europe).

So you have to read labels and figure it out for yourself and they say that 90 % of the protein in bread and wheat is gluten.

They used to say one needs to be back on gluten for at least six weeks, but now they say it is more like 3 or 4 months or even longer. With some it might take years.

The antibodies in the blood tests go away off gluten too, and the same story with them. Some do not get positive at all. And some labs only test half the celiacs positive if they ssend sample blood around to labs to test how they perform.

The DH: the samples must be taken on healthy skin, as the IgA is USED UP on the rash.

(The antibodies might not show in the blood either because of the same reason....)

Daughter has a diagnosis in spite of negative blood tests and biopsies.

nora