Just Like So Many Of You Others, I Am So Frustrated.

[Greentealady]

Hello, I am sorry to bog down this site with yet another story of negative blood tests. I am a 46 yr old who has always had stomach issues. Bloaty, gassy, alternating constipation/DH. I went gluten free for about 3 months and felt better. In the meantime my husband had eczema that cleared up after going on the diet with me. He did not have any stomach issues. My daughter who is 17 has had chronic acne her whole life. The only time it cleared up was when she was on Accutaine which is a gnarly strong drug recently went of the gluten and we saw an improvement.

My poor teenage daughter is missing her gluten something fierce. It is hard for adults to change eating but so much harder on teens. She has been gluten free for about 2 months. She has begged me to get a blood test, she really wanted proof that it is the gluten causing her acne, I explained the inaccurate tests but she stood strong. We put her back on gluten for a few weeks so it would be in her system.

We both took our first blood test last week. Mine came back normal and her's came back with a 1 sensitivity. The Dr of course was useless and did not tell me exactly what a 1 meant.

I forgot to mention that when she went back on it I did as well. We wanted to see if that would belp the accuracy of the tests.

My stomach is back in full swing pain. I am trying to blame it on stress and other things because I don't want it to be gluten and after all the test came back negative.

UGHHHHHHHHHHHHH

Any advice????????????? :-)

[lynnelise]

The blood tests seem to show false negatives fairly often...especially if you haven't been on a full gluten diet for several months. I say if you feel better on the gluten-free diet then you need to keep it up. Regardless of what the blood tests says, if you get unpleasant symptoms when you eat gluten then your body is sending you a message!

[rosetapper23]

Since both your husband and you saw improvements in your health, it appears that both of you may be sensitive to gluten (either celiac or gluten sensitivity). As such, you have passed your genes to your daughter, and she also has the condition. Regardless of the tests (which are very unreliable), it's reasonable to assume that all three of you should remain gluten free for life. I know that this is hard advice to swallow for a teenager. My own son learned of his condition when he was about to turn 16. He, however, had been so ill for the five years prior to the diagnosis, he was relieved to know that what he had was treatable--he actually assumed that he was about to die. When he learned of the diagnosis, he buried his face in his hands and sobbed...and said, "Oh, Mom, I thought I was dying!" Over the years (he's now 24), he has had times when he's cheated, but he's always sorry afterward--he breaks out in Dermatitis Herpetiformis all over his face, neck, sole of one foot, and one hand, and he suffers physically. He keeps hoping for a medical treatment, which may happen someday, but in the interim he really does understand that he needs to be gluten free to stay healthy. Your daughter's "acne" may actually be Dermatitis Herpetiformis. There was another thread recently where someone had noted that many people who had been on Accutane had turned out to have celiac, and he thought it was that Accutane CAUSED celiac. I suggested, instead, that many cases of Dermatitis Herpetiformis on the face is mistaken for severe acne by dermatologists and are placed on Accutane erroneously. Your daughter may be one of those people. I was diagnosed with severe acne since the age of 20 and was treated by many horrible medications that left me scarred before I found out that it was actually Dermatitis Herpetiformis the whole time. You can test this theory by having your daughter eliminate iodine, as well, from her diet (she should drink only organic milk, since iodine tends to be in dairy in some locations in the U.S.) to see if her "acne" improves even more. For many people, both gluten and iodine must be present for the lesions to appear....and my son, who knows this, actually cheats on his gluten-free diet sometimes because he knows he's avoided iodine long enough not to have a skin reaction to gluten. Of course, in the end, he will suffer the physical consequences...but Mom won't know about the cheating.

Iodine is also in iodized salt, processed foods, seafood, and certain vegetables like asparagus.

Good luck to all three of you!

[ravenwoodglass]

Over the years (he's now 24), he has had times when he's cheated, but he's always sorry afterward--he breaks out in Dermatitis Herpetiformis all over his face, neck, sole of one foot, and one hand, and he suffers physically. He keeps hoping for a medical treatment, which may happen someday, but in the interim he really does understand that he needs to be gluten free to stay healthy. Your daughter's "acne" may actually be Dermatitis Herpetiformis. There was another thread recently where someone had noted that many people who had been on Accutane had turned out to have celiac, and he thought it was that Accutane CAUSED celiac. I suggested, instead, that many cases of Dermatitis Herpetiformis on the face is mistaken for severe acne by dermatologists and are placed on Accutane erroneously. Your daughter may be one of those people. I was diagnosed with severe acne since the age of 20 and was treated by many horrible medications that left me scarred before I found out that it was actually Dermatitis Herpetiformis the whole time. You can test this theory by having your daughter eliminate iodine, as well, from her diet (she should drink only organic milk, since iodine tends to be in dairy in some locations in the U.S.) to see if her "acne" improves even more. For many people, both gluten and iodine must be present for the lesions to appear....and my son, who knows this, actually cheats on his gluten-free diet sometimes because he knows he's avoided iodine long enough not to have a skin reaction to gluten. Of course, in the end, he will suffer the physical consequences...but Mom won't know about the cheating.

Iodine is also in iodized salt, processed foods, seafood, and certain vegetables like asparagus.

Good luck to all three of you!

You are right about the need to avoid iodine at first for the antibodies to leave the skin. The iodine keeps the antibodies active when we are first healing however it can be added back in once being glutened no longer produces a severe rash. You don't need both iodine and gluten to flare, gluten alone will cause a flare. After the antibodies have left the skin some of us find that we will only get one or two tiny blisters instead of a full blown outbreak and for some a one time glutening might not even cause any rash at all since it can take time for the antibodies to build back up in the skin once they are gone.

Iodine is an important nutrient and should be added back in once the DH calms down.

[rosetapper23]

Unfortunately, I'm one of those persons who breaks out ONLY when gluten and iodine are present. I say "unfortunately,' because now that I take thyroid meds that contain iodine, even the smallest amount of gluten contamination causes me to break out in DH....even though I've been on an extremely strict gluten-free diet for more than seven years. For me, the iodine is a huge culprit in causing the outbreaks. However, in my case, I also seem to have a genuine allergy to it--after consuming too much at a sitting, I have an asthma attack, and I also always have a chronic rash across my upper back ever since starting to take thyroid meds. If iodine touches my skin, I end up with severe pain in the muscles underneath. I would be interested to know if other celiacs have these reactions, too.