Have Dh, Should I Be Tested For Celiac

[gooser]

I'm a 35 year old woman with dh on my knees, elbows, knuckles and scalp. My dermatologist believes it is dh although we are still waiting the results of my biopsy.

My question is, should I be tested for celiac too? Or should I just start the gluten-free diet? I feel my heart fluttering every time I eat gluten and have daily stomach cramping with diarrhea so I'm ready to go gluten-free. However I am about to switch insurance in 2 weeks and will have to go to a new primary care doctor. If I start the gluten-free diet then I won't get accurate results on blood tests. Is the biopsy for dh enough testing?

Thanks, gooser

[lovegrov]

If you have DH you have or will have celiac. The recent NIH consensus conference on celiac, which included all the top U.S. experts in celiac, agreed that there's no need to test people with DH for celiac. They just need to go gluten-free. I had DH for more than 20 years and nobody ever told me this. I nearly died from celiac.

If either you or your doctor needs further info on this, you can dowload the NIH document from this page:

Open Original Shared Link

richard

[faith]

I also have DH and have celiac, I was dx threw a biopsy. I have my own thought to this. I believe, that ANYONE, who has celiac should have a biopsy of thier sm. intestine also. But my thinking on this is alot of us have had Celiac for sometime before we get to the point of where we think of celiac being the cause. For example, I struggled with migraines for 15 years not knowing it was celiac disease, just this past year I got full blowwn celiac symptoms, vomitting, diareha, huge weight loss, increase liver enzyme level, DH, so thats when my gastro doc, said heyyou have Celiac, so for many of us we go years with this disease and don't know we have it until we get really sick. So here we go- with celiac it can do alot of damage to our organs, and cause lymphoma, which my died of from celiac this past Feb. so Even people that get dx threw blood work, I feel should have a endoscopy done so the dr. can see what kind of damage has been done also I think a colonoscopy should be done, and celiac pts. should have these done every year regardless how they feel. Thats my thought. So please get the endoscopy done even if you have the blood work done. Best of luck!

[lovegrov]

There's no reason for a person with celiac to have a colonoscopy unless you've reached the age where everybody should have one done.

Top celiac doctors also agree that as long as you're improving on the diet and your bloodwork is good, there's absolutely no reason to have repeat endoscopies. It's expensive, slightly risky, and just unnecessary. If you are on the diet and feeling better, you have healed or are healing.

richard

[gooser]

Thank you for the information. As of now, I will be gluten-free. I've had enough of being sick. I did have an endoscopy done about 2 years ago but all they told me was I had minor irritation, a small hiatal hernia and acid reflux. I believe I had a biopsy done at that time but my doctor did not say it showed anything. They gave me prevacid for the reflux.

If it hadn't been for the rash, I would never have found out about celiac disease. I told my sister (she also has symptoms and had an endoscopy with results identical to mine)and she had never heard about it but will follow up with her doctor now.

I'm glad we have this forum to find info. I guess I will start searching for recipes

Thanks again,

Gooser

[faith]

I guess we all seem to have our own ideas about the best way to get dx. and the best way to stay healthy, and its a wonderful forum to get alot of information, and learn how everyone deals with this disease. I guess I'm just one of the people that are on the over pertective side. Yes these tests can be expensive but an endoscopy once a year to check everything out is worth it to me to just know everything is ok. Alot of people that have celiac don't even have symptoms when there celiac is very bad, so its not always easy to tell if everything is going good untill its visually checked out. But you did have a endo. a couple of years ago which is great. I just thought if you've never had one it would be good to at least have it done to see how everything looks. As far as bloodwork coming back normal, my aunt who died in Feb. from celiac, had not felt good for a year before she died, she x-rays, mri's, ct's, lots of blood work, and yes even endo's, and colonoscopys done everything kept coming back normal, until she finally went to the University of Indiana Hospital where they specialize in Celiac disease the Doc, that took care of her thier is the head of Gastro. in the U.s. and is known throughout the world and said "have they looked outside of the intestines with a laporoscopy?" she said no, so thats what they did thier they found cancer in the bile dusct liver and pancreas, but was to far spread, she died very shortly after this. So thats probably why I'm more paranoid than most and also I'm very down on most docs, most tests, because of that . Around are city there are only 6 people dx. with celiac! So they aren't knowledgable with the disease, thank god we are only 45 minutes from Indiana where they do know alot about celiac, and they really help out with any questions. They will even e-mail you back with info. So yes we are very lucky to have each other on this forum to chat with.

[lovegrov]

I'm curious, how do they know celiac caused the cancer? I have a friend who died of what sounds like the same type of cancer but he didn't have celiac.

richard

[faith]

The Dr. in Indiana said that she had a rear type of lymphoma that is not something you see alot of, but she also had alot of other things that were going on while she was at the hospital in Indiana , she had gallstones, kindney stones, she starting getting very yellow, (from the problem with the bile), also her endoscopy in Indiana showed no villi and a tremendous amount of inflamation the dr. said she was probably ingesting gluten that she didn't know she was, or was cheating, she got dx when she was 23 back then they didn't have alot of the gluten-free foods that we have now, also they didn't have computers, so she couldn't talk to other celiacs like we can. But we guessed she didn't watch the external things she use-Ever. She didn't know about the cross contamination stuff until later in life. But I guess anyone can get cancer, but I believe we may be a little more prone to it than others , especially the lymphoma. I guess it goes to show us that good dr.s are very important. I feel like we should really take time to know these drs.before we go to them, I went to a few and I to my appt. and had them ask me explain all about the celiac, even went to the Cleveland Clinic and had the gastro dr. ask to tell my story to his colligues ? so they could learn about the celiac and DH. That was I guess my worst experience, now I know to make sure they specialize in the celiac area and I ask how patients they have with celiac and DH. But anyways best of luck to all and God less. I know I am a rambler.

[gooser]

Well, I just went to my gastro doctor and told him about my positive biopsy for DH. He wants to do a blood panel and endoscopy again. I told him I have been gluten free for about 2 months (he didn't even ask me if I was on the diet) and would that affect the blood work, but he didn't seem worried.

Should I eat some gluten before the test? It seems everthing I read says I should be eating gluten for blood tests. I'm confused. I'm still breaking out in tiny amounts on my knees and elbows but its definately gone down. My endoscopy is in 2 weeks and I think he wants the bloodwork done by then.

Please help.

Thanks,

Gooser

[mommida]

I wouldn't eat gluten if you have been diagnosed all ready. The doctors think their test are so sensitive they can see any type of damage. If you do the endo and there is no new damage, take that as a positive sign you are doing a great job on your gluten free diet. Don't take it as a negative diagnoses for dh.

Laura

[lovegrov]

Did you show your doctor what the NIH said about this -- that if you have proven DH, celiac tests are not necessary? This is the NIH saying this!!!! Here's a line from the report.

"Biopsies of the proximal small bowel are indicated in individuals with a positive celiac disease antibody test, except those with biopsy-proven dermatitis herpetiformis."

If your doctor wants to do the endoscopy to check for other things that's fine. But, yes, most experts say you need to be eating gluten for three months before the tests to ensure accuracy. You can go ahead and eat it, but at this point it probably won't make any difference. And your DH will flare again.

Has being gluten-free made a difference in your health other than the DH going down (DH can take many months to completely go away)? If the answer is yes, and most especially because you have DH, do NOT let this doctor try to tell you any negative tests mean you don't have celiac disease. You DO have celiac disease.

richard

[Pegster]

When I saw a GI dr about my diagnosis of DH she wanted to jump right in with the biopsy. I told her I had been gluten-free for six months and the tests wouldn't be accurate. I also told her the NIH considered a positive DH diagnosis to be a positive celiac disease diagnosis as well. I asked her why, since I had already committed to a gluten-free diet for life, she would want to still do a biopsy. I felt like I knew more than she did. (It didn't help that she looked about fourteen years old!) ANYWAY she said a biopsy was the only was to get a REAL diagnosis. I told her I had my diagnosis and No Thanks!

[ItchyMeredith]

This is a really old post but JUST the information I was looking for. I am bumping it up to the front so others can find it as well.

[little d]

Thank you ItchyMeredith,

There is a lot of good information on the old post that I think most people don't look at but with my rash on my wrist that I think is a possible case of DH, I too have been looking at the old post to see if there is any information that I can look at, before 2 weeks ago I did not even look at this thread because I had forgotten about my rash that I usually get once or twice a year.

donna