Question On Testing And Being Gluten Free

[JaneWhoLovesRain]

I know if one is going to have a small bowel biopsy they need to eat a lot of gluten in the weeks beforehand but does the same go for blood testing? Or will the results of blood testing be the same whether or not someone has had recent gluten?

Specifically what blood tests should one be given?

Thanks, Jane

[mushroom]

Yes, it's even more important to be on a full gluten diet for the blood testing, because the antibodies start to fade quickly when they are no longer needed. These tests are considered to be the full celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

[JaneWhoLovesRain]

oh shoot!! I was hoping testing could be done while being gluten-free. I've been gluten-free for two years because it was suggested my problems with vertigo may be gluten related. Over the last two months I've developed an unbearable itchy rash (seems to be bilaterally symmetric) which has been diagnosed as scabies. I have no idea where scabies would have come from since I have had virtually no skin to skin contact with anyone.

I could handle taking large amounts of gluten if it were to affect only my skin or intestines (I've never really had a problem with intestines) but there is no way I can do it if it will give me unexpected vertigo attacks. Not only are they extremely distressing and disabling but there is also the safety factor to take into consideration.

IF my problem is gluten and IF my skin rash is DH, then I must be getting gluten from somewhere, right? perhaps cross contanination? Does this mean there is enough gluten in me to make the tests effective?

[Takala]

No, sadly. You can trigger a DH attack with not enough gluten to raise your antibodies enough to show up on a test. It only takes one exposure, then the rash takes on a life of its own before it heals. And there are foods which aggravate active DH, such as kelp and iodized salt.

There have been people who had negative blood tests, and yet had rashes. There is more than one of us around here, who have been gluten free for awhile (years) yet sometimes we still get rashes, which may or may not be gluten related, depending on what caused the rash. It can be just allergies. I had a ferocious outbreak of topical dermatitis last summer which was probably an allergic reaction. Then it took awhile to heal because it was trying to get infected- I really had to get after it with antiseptics and exposing it for short periods of time to sunlight, and keeping it very clean. At other times in my past, I might have had a small patch of chronic DH, I tried getting a rheumatologist interested in this and did not succeed, years ago, because they are always thinking "lupus." Didn't have that, either. That rash went away on going gluten free. I can make my face break out by eating gluten, it's one of my symptoms.

Try getting the skin right next to the rash, not the rash itself, biopsied for D.H. And if it is scabies, then the scabies treatment should work.... if the scabies treatment does not work, then something else is causing the rash.

Try making and keeping a food diary. If this is the result of something you are eating, then you or a food manufacturer changed something recently. Also, consider topicals - anything can cause a rash. I am super sensitive to some ingredients in soaps which I suspect are just the fragrances. I recently changed brands of baby soap in the hand dispenser in the bathroom from a cheap store generic which was fine, to a famous name brand baby soap, "hypoallergenic, mild, safe" blah blah, and gaaaaaaah, my hands immediately turned dry, red, and cracked on it. I also tried using the baby lotion of same brand on myself, and got the same reaction. The area I put it on turned bright red. At least I didn't make the mistake of shampooing with this junk. The labels read clear for gluten and oats, btw, and I had used it years ago without a problem. Phooey on them.

Sorry about the ongoing problem. I know it is frustrating.

[Skylark]

Even more annoying, to be sure you get antibodies you need to eat a full gluten diet for three months. You can't just eat a little gluten for a week or two and get a reliable blood test when you start feeling ill. It makes it very hard for those of us who had to self-diagnose because of ignorant doctors.

An unbearably itchy, bilaterally symmetric rash sure sounds like DH. Is there any way to get to a dermatologist who has experience with DH?

[JaneWhoLovesRain]

Yes, I'm trying to find a dermo who is dh knowledgable. The one I saw said dh doesn't itch. I don't have much confidence in him. I'm afraid I'll never get a definite yes or no as to if I have dh/celiac or not because there is no way I can gluten myself. I am seeing someone else next week. Hopefully she'll be better than the guy I saw.

[pricklypear1971]

If you can't get anyone to biopsy it, you may try a low iodone diet for a while to see if it helps to snuff it out. Google "thyca".

You didn't happen to add any high iodine foods or supplaments to your diet, did you? That's what got me - a multi with iodine. Ouch.

Iga antibodies can stay in your skin for years - that's what causes a DH flare (activation or whatever they call it of those antibodies).

[squirmingitch]

Jane, I bet if you see the GI Dr. IrishHeart & someone else recommended, the doc will be able to tell you who is the best derm to see about getting a biopsy of the dh. Maybe even if you call the office & explain to them they will be able to ask him & get back to you with the name of the best derm for the situation.