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Going To Doctor

Ang615

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Ang615 Newbie
Ang615
Posted

I am going to see my primary doctor (new to me by the way), and I would love any advise on what kind of questions I should ask and tests that I should make sure get ordered. I am hoping the benefit of seeing a new doctor will help with this. My mother has had a lot of gastrointestinal problems for as long as I can remember including a surgery for hiatel hernia, and very recently surgery to remove scar tissue that had wrapped itself around her intestine causing a reverse kind of bowel obstruction. My brother has Chron's since 1985 or so and had a major surgery to remove scar tissue in 1986. I do not seem to have a lot of symptoms of the gastrointestinal kind, but I do have a bad rash that started slowly on my torso, shoulders, back and thighs about a year ago and has been getting progressivly worse and spread to my arm especially around both my elbows. I never wear short sleeves in public because the spots are SO bad on my arms. It seems all I do is scratch them and break them open. Any help would be great! Thanks.

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mushroom Proficient
mushroom
Posted
I am going to see my primary doctor (new to me by the way), and I would love any advise on what kind of questions I should ask and tests that I should make sure get ordered. I am hoping the benefit of seeing a new doctor will help with this. My mother has had a lot of gastrointestinal problems for as long as I can remember including a surgery for hiatel hernia, and very recently surgery to remove scar tissue that had wrapped itself around her intestine causing a reverse kind of bowel obstruction. My brother has Chron's since 1985 or so and had a major surgery to remove scar tissue in 1986. I do not seem to have a lot of symptoms of the gastrointestinal kind, but I do have a bad rash that started slowly on my torso, shoulders, back and thighs about a year ago and has been getting progressivly worse and spread to my arm especially around both my elbows. I never wear short sleeves in public because the spots are SO bad on my arms. It seems all I do is scratch them and break them open. Any help would be great! Thanks.

Do you suspect that you have dermatitis herpetiformis? The test for this is to biopsy the area immediately adjacent to the lesion while is is in its active phase.

If you want her/him to do the celiac blood panel you should ask for

1. EMA (Immunoglobulin A anti-endomysium antibodies)

2. AGA (IgA anti-gliadin antibodies)

3. DGP (Deamidated gliadin peptide antibody)

4. tTGA (IgA anti-tissue transglutaminase)

This is the latest recommended panel. He may not order this is you are not showing any GI, neurological or other symptoms, and if none of your family members have been diagnosed. However, a positive DH biopsy is diagnostic of celiac.

Hope this helps.

Ang615 Newbie
Ang615
Posted
  • Author
Do you suspect that you have dermatitis herpetiformis? The test for this is to biopsy the area immediately adjacent to the lesion while is is in its active phase.

If you want her/him to do the celiac blood panel you should ask for

1. EMA (Immunoglobulin A anti-endomysium antibodies)

2. AGA (IgA anti-gliadin antibodies)

3. DGP (Deamidated gliadin peptide antibody)

4. tTGA (IgA anti-tissue transglutaminase)

This is the latest recommended panel. He may not order this is you are not showing any GI, neurological or other symptoms, and if none of your family members have been diagnosed. However, a positive DH biopsy is diagnostic of celiac.

Hope this helps.

Yes, thank you it helps alot. I do think I have DH. I have not started a gluten free diet yet because I am hoping to get the neccessary testing done. Just in the past two days I have more new spots. I have several in all different stages of healing. They usually heal then leave a purplish mark for a few weeks. Is it posible to test postive for DH and then negative from the celiac panel? I think if I have my homework done and know the right questions to ask, the doctor will hopefully take it serious and order all the correct tests. Sounds like I should start with the DH biopsy. Thanks again!

mushroom Proficient
mushroom
Posted
Yes, thank you it helps alot. I do think I have DH. I have not started a gluten free diet yet because I am hoping to get the neccessary testing done. Just in the past two days I have more new spots. I have several in all different stages of healing. They usually heal then leave a purplish mark for a few weeks. Is it posible to test postive for DH and then negative from the celiac panel? I think if I have my homework done and know the right questions to ask, the doctor will hopefully take it serious and order all the correct tests. Sounds like I should start with the DH biopsy. Thanks again!

Yes, I would start with the DH biopsy, and make sure he does not test the active (not healing) lesion itself but clear skin immediately adjacent to it (just to be repetitive and redundant) :) . If this is positive, it doesn't really matter if the blood work is negative because you will already know your are a celiac. The purplish residual scar is a telltale of DH in my experience.

Good luck with your appointment.

Ang615 Newbie
Ang615
Posted
  • Author
Yes, I would start with the DH biopsy, and make sure he does not test the active (not healing) lesion itself but clear skin immediately adjacent to it (just to be repetitive and redundant) :) . If this is positive, it doesn't really matter if the blood work is negative because you will already know your are a celiac. The purplish residual scar is a telltale of DH in my experience.

Good luck with your appointment.

Well I got the results of blood tests and saw a new pcp. She actually only ordered the tTG/IGA test in addition to the routine blood test for a new patient. I am not really sure what the result of the tTG test means for me because I can't seem to find anywhere what the normal range should be. My result was 11 units??? She did refer me to a dermatologist to diagnose DH and I go there next week. She originally wanted to wait on a referal to GI doc until I saw the dermatologist, but she went ahead and refered me there as well. I have an appointment in 2 weeks.

If anyone has any other suggestios it would greatly be appreiciated!

mushroom Proficient
mushroom
Posted

Do ask the doctor's office for a copy of the blood test results. It is a good idea to maintain your own copies of medical records for reference. Often you (or another doctor) can pick up on things that have been overlooked. Your lab report should show its reference range for the test. Many doctors consider things that are only mildly positive as negative, for example. A lot of doctors don't look at the overall picture, just at the things on the lab report that are starred as being out of range. E.g., my rheumatologist was very concerned with my extremely high CRP scores. When they suddenly dropped to normal on my present medication, she didn't even notice, because they were normal. I was so excited, she didn't even know!

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