How Can I Get Testing For My Son If He Has Been Gluten Free For Years

[AndyS]

Hello.

My son has been essentially gluten free for years. At first his reactions were more mild and brought on by larger portions of wheat. Generally, he would break out in rashes on legs, arms and face when eating wheat. Through process of elimination, we elimiated wheat. But he seems to have become more sensitive with time. Smaller, accidental, doses bring on diahrea, etc.

QUESTION: We are told that in order to get him tested we will need to give him gluten for several weeks. I don't think we can do that. But we would like to better understanding of what is going on -- if only to know whether we need to be more vigilant in avoiding accidental wheat, or cross-contamination issues, etc.

Thank you all in advance.

[MsCurious]

Hello.

My son has been essentially gluten free for years. At first his reactions were more mild and brought on by larger portions of wheat. Generally, he would break out in rashes on legs, arms and face when eating wheat. Through process of elimination, we elimiated wheat. But he seems to have become more sensitive with time. Smaller, accidental, doses bring on diahrea, etc.

QUESTION: We are told that in order to get him tested we will need to give him gluten for several weeks. I don't think we can do that. But we would like to better understanding of what is going on -- if only to know whether we need to be more vigilant in avoiding accidental wheat, or cross-contamination issues, etc.

Thank you all in advance.

Does he break out in the rash pretty easily from ingesting gluten? If it is dermatitis herpetiformis the skin next to the rash can be tested for antibodies and give you a celiac diagnosis. In his case this might be a lot shorter time period on gluten to get a diagnosis, than the 3 months it takes of ingesting gluten to do an intestinal biopsy. I don't have DH, so I have no clue how fast it can show up... it was just a thought.

[AndyS]

Does he break out in the rash pretty easily from ingesting gluten? If it is dermatitis herpetiformis the skin next to the rash can be tested for antibodies and give you a celiac diagnosis. In his case this might be a lot shorter time period on gluten to get a diagnosis, than the 3 months it takes of ingesting gluten to do an intestinal biopsy. I don't have DH, so I have no clue how fast it can show up... it was just a thought.

thanks. Yes. that may be very helpful. he usually gets the rash pretty quickly. I will follow-up on that.

(p.s. I have read some of your other posts on other forums and found them helpful as well)

[MsCurious]

thanks. Yes. that may be very helpful. he usually gets the rash pretty quickly. I will follow-up on that.

(p.s. I have read some of your other posts on other forums and found them helpful as well)

Thank you its nice to know I can give back a little bit. Good luck with your son!

[andrwoman1]

thanks. Yes. that may be very helpful. he usually gets the rash pretty quickly. I will follow-up on that.

(p.s. I have read some of your other posts on other forums and found them helpful as well)

I would love to hear if it work, my husband has been gluten free for 3 years and we would like to have him tested but he would not want to be on gluten

[eatmeat4good]

The skin biopsy can be negative even if he does a gluten challenge. Many DH patients do not test positive in blood, skin biopsy, or intestinal biopsy even though they may be VERY sensitive to cross-contamination.

The fact that he is sensitive to even cross contamination means that a 3 month gluten challenge would likely be very miserable for him. (and for you having to watch him go through it)

You might do a 3 month gluten challenge, have negative tests in blood and biopsy, and spend months trying to heal the lesions that resulted from the challenge. The IgA antibodies can remain in the skin for up to 10 years. It takes very little to activate them, as you have found. Some people heal in weeks to months, but others take up to 2 years strictly gluten free to be able to heal.

I hope you will be able to get a skin biopsy, but if it is negative, you need to remember what you already know- that gluten is a problem for your child.

If the skin rash is DH, you might need to eliminate iodine temporarily since it is known to be able to activate the antibodies and the lesions even in the absence of gluten. Temporary elimination is recommended because everyone needs iodine. However, it might help heal the rash faster. There is a lot of information on this in the DH forum.

I don't mean to sound negative about testing. I understand wanting a diagnosis. But as someone who has to live with this rash, I couldn't imagine putting myself through a 3 month gluten challenge and I cringe when I think of child going through that.

[ravenwoodglass]

The skin biopsy can be negative even if he does a gluten challenge. Many DH patients do not test positive in blood, skin biopsy, or intestinal biopsy even though they may be VERY sensitive to cross-contamination.

The fact that he is sensitive to even cross contamination means that a 3 month gluten challenge would likely be very miserable for him. (and for you having to watch him go through it)

You might do a 3 month gluten challenge, have negative tests in blood and biopsy, and spend months trying to heal the lesions that resulted from the challenge. The IgA antibodies can remain in the skin for up to 10 years. It takes very little to activate them, as you have found. Some people heal in weeks to months, but others take up to 2 years strictly gluten free to be able to heal.

I hope you will be able to get a skin biopsy, but if it is negative, you need to remember what you already know- that gluten is a problem for your child.

If the skin rash is DH, you might need to eliminate iodine temporarily since it is known to be able to activate the antibodies and the lesions even in the absence of gluten. Temporary elimination is recommended because everyone needs iodine. However, it might help heal the rash faster. There is a lot of information on this in the DH forum.

I don't mean to sound negative about testing. I understand wanting a diagnosis. But as someone who has to live with this rash, I couldn't imagine putting myself through a 3 month gluten challenge and I cringe when I think of child going through that.

I unfortunately have to agree with this. I do hope the skin biopsy is successful if you decide to do it. A DH diagnosis is a diagnosis of celiac. Make sure that the derm you use is knowledgeable about DH and does the biopsy correctly. They have to biopsy the skin next to the active lesions not the lesions themselves.