Made Doctors Appointment

[rdunbar]

I was referred to a new doctor in my area by a fellow celiac who has been gluten free for 25 years; I figured she would know someone familiar and knowlegable about celiac, so I made an appointment for this week. I don't know how to prepare, or what to expect.

I am self diagnosed, and have had no blood tests for celiac. When I went to the dermatologist @5 years ago about the DH on my scalp, they gave me a biopsy for skin cancer! The last time I went to a doctor was about 3 years ago because of a big staph infection I had on my knee ( grapefruit sized) he asked me what was wrong with my scalp. Since then, I developed GI symptoms, and other symptoms that Ive had got much worse, now I realize that infection must have acted like a trigger, also I have gotten smaller infections routinely, but have not gotten more antibiotics, as the smaller infections go away on thier own.

From what I've learned now about celiac and DH, i am concerned about my thyroid, and the possibility of lymphoma? The symptoms for thyroid seems to match mine, irritable a lot , and tired and sleepy all the time. I want to get tested for this, and get tested for my vitimin levels, especially D3 and B12.

What else should I look into? How should I prepare for the visit?

Am I going to need to prove somehow that I have celiac? My GI symtoms have pretty much resolved on the gluten/ casien free diet, but I imagine my somewhat severe DH speaks for itself. There is no way I am ever ingesting gluten for the sake of testing, ever!

Apparantly this doctors wife has celiac, so he is supposed to be up on it! Without knowing this I doubt I would be making this appt. I have been kind of resistant to the idea, and reading about all the bad scenarios that can happen with docs on the board keep me feeling this way.

I just hope it's a good experience, and that I can get some real help.

I understand people w/ DH are at a bigger risk for lymphoma cancer, and thyroiddisease. My Dad passed away from cancer 4 months ago and he had an itchy rash on his scalp too. and there is a family history of colon cancer, I'm really scared, and have spent too much time in denial about my health or avoiding dealing with it.

Any ideas or help would be appreciated, what can I do to be prepared, and what else can a doctor do now to actually help me? What questions should I ask, ect..?

[SGWhiskers]

Mention your concerns to your doctor about lymphoma and thyroid. I beleive a CBC (standard blood test) screens for lymphoma when it looks at your white blood count. Ask to have all your vitamins tested. I had a doctor say to me one time that she couldn't order the test for all the vitamins because it wasn't on her order form. I would need to see the nutritionist for that because she had the forms. Hopefully you get a more flexible doctor. Have the TH3 and TH4 run. Consider requesting a bone density screening. I was 33 when I had mine done and it already showed osteopinea. That gives me extra motivation to keep up on my calcium, D and exercise. OK, maybe it gives me guilt for not always keeping up on those. The doctor will probably want to do a challenge for testing, but he/she can't make you. If you don't need the diagnosis for tax reasons, don't worry about it. If you do, just decide if that deduction is worth it. If you are still having DH, I suspect you have not eliminated all gluten. You are probably getting cross contamination somewhere. In which case, have the DH tested by a good dermatologist. That will get you the celiac diagnosis. Since you are still feeling sluggish, it could be thyroid, or just a need to get the last of the gluten out of your diet.

[rdunbar]

I'm eating only unprocessed and unpackaged food, meat veggies and fruit. No grains at all,I have my own kitchen. And the only chance I have for CC is that my upstairs nieghbor insists on feeding her dog downstairs. She washes th dog food bowl in the sink, so I wash all my dishes in a plastic tub, and have all my food away from the dogfood.

I've heard it can take 2 or more years for DH to go away especially in bad cases, which mine is

it definatly is less itchy and painful as in the past. Still, I'll think about any other sources of CC that could still be around. Also I just found out the salt I've been using has iodine! There is none added, but it occurs naturally ( pink Himalayan salt) I got some kosher salt yesterday that says ' no iodine'

Bone density test is I good idea. Thanks. A masseuse told me I have scoliosis, and my joints ache when I get glutened

[mushroom]

To prepare for your visit I would write out a history of your symptoms, what treatments and testing you have (or haven't) had, about the staph infection and then the onset of GI symptoms, about the biopsy for skin cancer rather than DH (when you go to the dermatologist, the biopsy needs to be done immediately adjacent to the lesion, not of the lesion itself); by the way, how long have you been gluten free, that your DH symptoms have not resolved yet? Are you avoiding iodine as much as possible? Explain the resolution of your GI symptoms on the diet.

Write all these things down because the doctors will always distract you from giving your history and you need to be able to refer back to the script to keep the consultation on your track instead of his. Doctors are quick to form impressions and opinions and can totally derail a consultation if you let them. So you have your script and you can deflect their line of thinking by, "Yes, that may be so, but....."

Stress your family history of itching rashes and colon cancer, especially your dad, and tell him you want the rash biopsied. If that comes back positive, you are celiac.

Explain that you know all the possible side effects of having celiac, including the low nutrient levels, (you need to have your iron level checked as well as B12, D, folate, zinc, potassium), osteoporosis, increased risk of lymphoma and colon cancer and you want to prevent these consequences.

Good luck

P.S. Posted after your post

[ravenwoodglass]

Have you eliminated gluten from all your toiletries and shampoos, hair dye (if you use it) lotions etc? Just in case you have this issue also, don't know if you do, I get intensely itchy scalp and lesions from soy protein in shampoos etc. I have an actual allergy as well as intolerance to soy. Are you sensitive to soy by any chance?

[cassP]

like others have said on here- get a biopsy adjacent to your DH as soon as you can- a positive DH dx is a positive Celiac dx... then you'll never have to worry about going on any kind of gluten challenge for blood tests!!

good luck with the rest

dont worry yourself sick with the "people with DH have higher risks of lymphoma & cancer"... that's because all of us with Celiac have the "higher risks"- but as long as your doc is checking you over really good- dx you, maybe doing a colonoscopy too... checking your vit levels...

once you get your nutrient levels back up, and on a gluten free diet-> then those "higher risks" just go back to being normal like any other person

[rdunbar]

Have you eliminated gluten from all your toiletries and shampoos, hair dye (if you use it) lotions etc? Just in case you have this issue also, don't know if you do, I get intensely itchy scalp and lesions from soy protein in shampoos etc. I have an actual allergy as well as intolerance to soy. Are you sensitive to soy by any chance?

I don't use any bodycare products that contain gluten. I even ordered some gluten free soap through the mail.

Also am not eating anything remotely like soy. I'm really just eating meat, vegetables, salad, sweet potatoes, and fruit for about 5 months now, and have cut out all dairy, also no nightshades or legumes at all

I was on a "gluten lite" diet for @3 years previously, because a naturopath I went to about the rash told me I had a wheat allergy. Unfortunatly she didn't know about celiac, DH or cross contamination. Also I didn't look into it myself, and find this website. I was eating out everyday, and getting exposed doing catering jobs, if anything I think cutting down on gluten during thus period made me more sensitive, and My symptoms got worse, and I started getting more severe GI symptoms when I got exposed.

Since I've been strictly gluten free for months wouldn't a skin biopsy be unreliable at this point

ravenwoodglass, how long did it take for your DH to go away gluten free? I remember that you had it for a very long time

[elk]

Can someone enlighten me on what DH is? What is the test for it? It sounds like I can be gluten free and have this test be accurate for Celiac?

[cassP]

even if you're strictly gluten free- if you're still having a DH flare up- i would think that biopsy would be positive.

but im not an expert on the DH.

and i TOO would like to know how long it takes for the DH to go away after being gluten-free .... ive only been 100% gluten-free for over 2 months. i have what i think is DH right below my navel. my GI said that was an odd place to have it- but seems logical to me- it IS like the CLOSEST patch of skin to my small intestine..

[ravenwoodglass]

Since I've been strictly gluten free for months wouldn't a skin biopsy be unreliable at this point

ravenwoodglass, how long did it take for your DH to go away gluten free? I remember that you had it for a very long time

If the DH is active then they should be able to pick up the antibodies if they biopsy correctly.

Although I had DH severely and for most of my life I stopped getting new outbreaks within a couple months gluten free. I was extremely strict and realized early on that I react to distilled gluten grains in vinegar and alcohol so I cut those out also. They would flare the DH and give me the other symptoms I get with gluten. When I got accidentally glutened the rash would come back pretty badly for a year or so. I've only been glutened once or twice a year for the last couple years and I only get one or two tiny little blisters now.

Since you are so strict I have to wonder if you are possibly allergic to something else in your shampoos or other haircare products unless you are getting enough CC somewhere to keep the antibodies active. If you consume distilled gluten you may want to try cutting that out also and seeing if it helps.

[rdunbar]

Can someone enlighten me on what DH is? What is the test for it? It sounds like I can be gluten free and have this test be accurate for Celiac?

Dermatitas Herpetiformis is the version of celiac which attacks the skin in the form of a rash which is charcterized by clusters of blisters, which are kind of raised. Flaring up, the spots are red and extremely extremely itchy to the point of being painful. The antibodies are different than the ones which attack the GI system or nervous system/ brain

It normally appears on the elbows, knees, face, or scalp. But can appear anywhere. It's symettrical in that if it always effects both sides of the body, right and left.

Only 10-20 percent of people with celiac have DH,. it is also an autoimmune disease. It is also a permanent condition, only managable through a gluten free diet. If you ever reintroduce gluten it is recurring

there is a dermatitas herpetiformis forum on this board towards the bottom

[rdunbar]

If the DH is active then they should be able to pick up the antibodies if they biopsy correctly.

Although I had DH severely and for most of my life I stopped getting new outbreaks within a couple months gluten free. I was extremely strict and realized early on that I react to distilled gluten grains in vinegar and alcohol so I cut those out also. They would flare the DH and give me the other symptoms I get with gluten. When I got accidentally glutened the rash would come back pretty badly for a year or so. I've only been glutened once or twice a year for the last couple years and I only get one or two tiny little blisters now.

Since you are so strict I have to wonder if you are possibly allergic to something else in your shampoos or other haircare products unless you are getting enough CC somewhere to keep the antibodies active. If you consume distilled gluten you may want to try cutting that out also and seeing if it helps.

Thanks, I'm not getting new spots, and the ones I have are not as bad as they were, it doesn't feel llike they are erupting . It still itches but not nearly as bad as it used to, and I can actually stand to put it under the shower. I can remember it getting super bad after eating lots of seafood, like when I was in baja in Mexico, and other times when I was eating sushi a lot; now that I know how iodine makes it worse, this makes sense

I am taking fishoil ,which has a small amount of iodine; I'm not sure if it's enough to make a difference, it's a very tiny amount.