Blood Work Only?

[Jackchick]

HI!

Very new to the forum and gluten issues. Started with a rash, very DH in nature but not quite like the pics I've seen. Went off gluten (a step-parent is celiac and the rash looked very similar to his) to experiment, rash still there because I only took out wheat/flour since I didn't know all the other "suspects" for gluten. My PCP admittedly is unfamiliar with gluten issues, but ordered blood work and I have them. Dont know what it means but the DR said it's negative for this and recommends I seen a Derm for the rash. (rash improved when all gluten eliminated and took presidone).But it's still lingering and it takes awhile to get in to Derm so, I'm staying off the gluten but want to know the experience of others how helpful is the blood work? Is this the "lab" info I keep reading or is this primarily to do with the gene for celiac disease or the colon stuff (maybe one and the same).

I'm sorry for my ignorance. I need to do more reading obviously.

Thanks. This has been a great site. And has really opened my awareness of this problem. I enjoy the "fight back" mentality! It is very hopeful and encouraging!!

[Lisa]

Hi Jack and Welcome!

This is the specific Serologic Blood Panel to test for Celiac:

Antigliadin antibodies (AGA) both IrA and IgG

Antiendomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

There is no testing for Celiac that is considered 100% reliable, so there may be some false negatives. DH is not specific to gluten issues, but can closely associated Celiac Disease. (but that can be another discussion here )

I assume that "lab" you are referring to is Enterolabs. Many people have used their services and it remains a hotly discussed topic here, as you may have already found.

Enterolabs has a stool test, which is not recognized by any National Celiac Associations as a diagnostic tool. Enterolabs can test for sensitivities to certain foods, but they do not diagnose for Celiac Disease. Many people have sought their services after years of frustration with the main stream medical community.

If you have seen progress in healing on the gluten free diet, I would encourage you to continue. The gluten free diet can be very complex in the beginning. This site can help guide you though the difficulties.

[nasalady]

Very new to the forum and gluten issues. Started with a rash, very DH in nature but not quite like the pics I've seen. Went off gluten (a step-parent is celiac and the rash looked very similar to his) to experiment, rash still there because I only took out wheat/flour since I didn't know all the other "suspects" for gluten. My PCP admittedly is unfamiliar with gluten issues, but ordered blood work and I have them. Dont know what it means but the DR said it's negative for this and recommends I seen a Derm for the rash. (rash improved when all gluten eliminated and took presidone).But it's still lingering and it takes awhile to get in to Derm so, I'm staying off the gluten but want to know the experience of others how helpful is the blood work? Is this the "lab" info I keep reading or is this primarily to do with the gene for celiac disease or the colon stuff (maybe one and the same).

Hi and welcome!

From your post I guess I'm not quite sure about a couple of things, such as (i) did you go off gluten before or after your doctor ordered the blood work?, (ii) what are the results of your blood work? Did the doctor test you specifically for celiac disease? Did he/she run all of the tests listed by Lisa?, (iii) has the doctor suggested a biopsy of the intestine?

If you will be doing further testing, you must eat gluten (probably the equivalent of 2 - 4 slices of bread per day minimum) until all testing is finished. Otherwise you will test negative whether you have celiac disease or not. I also note that you mentioned prednisone. I tested negative and my GI doctor was convinced it was because of the high dose of prednisone I'm on....so be aware of that issue too. The prednisone suppresses the antibodies in your bloodstream and also causes the intestinal villi to regenerate so that a biopsy will likely be negative.

Good luck!

JoAnn

[Fiddle-Faddle]

from the celiac sprue association website:

Dermatitis Herpetiformis (DH) is an important associated disorder or complication of celiac disease which is manifested in the form of a skin rash. There is strong evidence that the changes in the intestinal mucosa and the immunologic findings in the majority of patients diagnosed with DH are identical with those found in celiac disease. Gluten has been found to have a close relationship with this skin rash. DH is often referred to as "celiac disease of the skin" while celiac disease is referred to as "celiac disease of the gut."

There are a few of us here who have had DH-type rashes, and we have had negative bloodwork because of having been prescribed prednisone for the rash! It's an AWFUL rash, and most of us aren't willing to risk a recurrence by going back on gluten for repeat blood work.

If you are already gluten-free, and the rash is improving, you might as well see what a month or two of 100% gluten-free does for you, and take it from there.

My own experience with the derm was terribly frustrating. By the time I got in to see him, the rash was nearly gone, and he didn't believe that it had ever been anything like DH, even when I showed him pictures (he wouldn't even look at them). He also said (incorrectly) that it didn't matter how long I'd been off gluten, that blood tests would be accurate, and that prednisone would have no effect . He was totally ticked off that I dared to research on the internet, and that I dared to go off gluten on my own without consulting him, and said that he thought I wanted celiac disease.

I sure hope your experience is better!

[Lisa]

Open Original Shared Link

Dermatitis herpetiformis is frequently associated with gluten (a protein found in cereals) sensitivity in the small bowel. This means that instead of being highly convoluted, the lining of the intestines is smooth and flattened. Gluten is a protein present in grasses of the species Triticeae, which includes barley, rye, and wheat. Rice and oats belong to different species and are generally well tolerated. Hormonal factors may also play a role in the pathogenesis of DH. Androgens have a suppressive effect on immune activity, including decreased autoimmunity, and androgen deficient states may be a potential trigger for DH exacerbation. IgA circulating immune complexes are present in 25-35% of patients with DH, although no association with disease severity has been noted. These immune complexes also have been noted in patients with isolated GSE and are believed to be related to the presence of the gut disease. Associated autoimmune diseases include dermatomyositis, type 1 diabetes mellitus, myasthenia gravis, rheumatoid arthritis, Sj

[Jackchick]

WOW! thank you for the great info. and the nice welcome.

I had gone off gluten for about 10 days when I went in with the rash. I had been progressivly getting worse with the rash for about 2 weeks, then thought about the gluten-connection and stopped the obvious foods. I saw some improvement and went to the dr at that time. I had labs that day and then the next day started the presedone. So no drugs of any kind were in my system at the time of the blood work, but I was drasticly decreasing the wheat/flour. Had some soy sauce and a few things like couscous that I didn't know was bad during those 10 days of fairly gluten-free.

So, I get Antigliadin IgA done and they say negative. The values are low .11 on one and the other antigliadin IgG .51, then the Transglutaminase IgG 4.7 and Transglutaminase IgA 10.8 and the total looks like 138. These look low to me.

From what I read there are alot of false positives and yes, the rash sucks! Who would want to pack on the gluten just to see if they break out. I'm sticking with getting free of gluten. It's better for me anyway! Should I consider the stool test since this was blood work at my PCP office? I'm overweight and I can't see how I could have celiac disease and be malnourished...But I was improving prior to the presidone and it did clear up the rash nearly completely. Problem is all the foods I was still eating because I didn't know and then the obvious cheating with pizza and cookies brought on the increased rash. Sometimes I just forget since I've had to be aware of it for 30 days out of 44 years!LOL

I will keep reading this site and would like to know if anyone has a book to recommend for gluten education.

[nora-n]

Hi, only about 5% are under-weight, and about 30% are obese.....

The thing is, villi damage is often patchy and the remaining parts of the intestine over-compensate for the villi damage in the first part of the small intestine, so one gets over-weight.

I only lost weight after going gluten-free.

My test results were a number too, normal is 0 but your results were a number (instead of 0) and I think that means something.

Maybe you are like us with gluten sensitivity, biopsy results are often not positive enough in us.

The doctors are barking up the wrong tree, they look for gut damage in typical celiacs, while gluten intolerance is a much wider issue. Gluten affects the skin, the brain and everything autoimmune. It is not malnutrition.....

They have found different antibodies for different issues:

ttg3 antibodies in DH

ttg6 antibodies in gluten ataxia

antigliadin antibodies in the brain

nora

[Fiddle-Faddle]

So, I get Antigliadin IgA done and they say negative. The values are low .11 on one and the other antigliadin IgG .51, then the Transglutaminase IgG 4.7 and Transglutaminase IgA 10.8 and the total looks like 138. These look low to me.

Every lab has a different range of what is considered high or low, so I can't say for sure, but--if you are producing ANY of these antibodies, then you are producing antibodies to gluten! People who don't have any problem with gluten don't produce antibodies to it. The fact that you were producing any at all while on a gluten-lite diet, plus your response to the diet means something!

For some of us lucky ones, we become malnourished because of the gluten-caused leaky gut, but our bodies hang onto EVERY calorie we consume, so we become overweight--but still malnourished!!!

I lost 20 pounds the first month or two of being gluten-free--about half of what I needed to lose--and I wasn't even trying to lose weight.

[Tallforagirl]

This is a good source for information both about celiac disease and DH: Open Original Shared Link

The Celiac Centre at Columbia is one of the world's most respected, and it's the one that Dr Peter Green is attached to. I just finished reading Dr Green's excellent book "Celiac Disease - a Hidden Epidemic," and he really stresses the importance of a full and proper diagnosis, including a biopsy.

He says none of the blood tests are 100 per cent definitive for diagnosis, although the EMA (endomysial antibodies) one is the most specific for celiac disease.

If your blood tests are inconclusive, and you are symptomatic, you should ask for a biopsy anyway.

In Dr Green's book, he says that if you think you have DH, you can have the rash biopsied (a skin biopsy) for quite some time after going gluten-free (6-12 months). If you are diagnosed with DH you definitely have celiac disease and don't need a gut biopsy.