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Awaiting Testing

TPT

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TPT Explorer
TPT
Posted

Hi. I am currently waiting to be tested for celiac/gluten intolerance. I have several possible symptoms, but the thing that brought me to the doctor was my skin. I've been dealing with itchiness and rashes for 8 years. The severity comes and goes, but I always have a little something going on. I now have a rash on my face that won't go away. I went to the derm. Unfortunately, they didn't want to test me right away. (Tried some meds One for my body rash helped, but not meds for my face rash.) In the mean time, I found out my brother has been trying gluten free for 4 months. His tests came back inconclusive, but his DNA showed 1 marker for celiacs. I go back on the 24th, and hopefully will have a biopsy done.

Does anyone know the likelyhood of having celiacs first, for my brother if he has a marker for it, and 2nd for myself given my brother has a marker?

I also have another autoimmune issue called lichen sclerosis.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Isn't it just like our doctors to give meds for symptoms first rather than try to figure out what the issue is. (okay rant over)

Do ask the derm to biopsy for DH. Make sure that the doctor knows how to do it. The biopsy needs to be taken from beside the lesion not the lesion itself and they need to be looking for DH at the lab.

If your only symptom is DH you may have a greater chance of a false negative on blood testing than if you have severe GI symptoms. Do be aware that false negatives are common in both blood and endo biopsies. Do not go gluten free until all the testing is done.

If your brother has celiac your chance of also having it is pretty high. How is your brother doing on the diet? Is it helping his symptoms? If being gluten free helps issues that is more important than what the blood, endo, biopsies and gene testing show.

TPT Explorer
TPT
Posted
  • Author

Isn't it just like our doctors to give meds for symptoms first rather than try to figure out what the issue is. (okay rant over)

Do ask the derm to biopsy for DH. Make sure that the doctor knows how to do it. The biopsy needs to be taken from beside the lesion not the lesion itself and they need to be looking for DH at the lab.

If your only symptom is DH you may have a greater chance of a false negative on blood testing than if you have severe GI symptoms. Do be aware that false negatives are common in both blood and endo biopsies. Do not go gluten free until all the testing is done.

If your brother has celiac your chance of also having it is pretty high. How is your brother doing on the diet? Is it helping his symptoms? If being gluten free helps issues that is more important than what the blood, endo, biopsies and gene testing show.

When the doctor asked me if I have stomach issues, I initially said no. However, I think I got used to my "normal." I get bloated easily. Although it's only in the morning, my BM's aren't normal. (Too many, not solid.) I also feel tired. I have tingling in my hands and feet on occasion. There's other minor stuff that could be just about anything. My rash fits the dh description.

As for my brother, I don't know all his details. I know he suffers from sever fatigue and joint pain. He said he felt better his first week gluten free, but then started feeling ill again.

And yes, though I was mostly very happy with the doctor, I was VERY unhappy she wouldn't test me given I have had issues for 8 years. She said the success of the meds would also be telling. Still, I understand a biopsy on a rash is pretty accurate. Well, at least I can enjoy possiby my last gluten filled Thanksgiving.

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