Confused About Diagnoses And Doctors

[LoriC]

MY dermatologist firmly believes I have DH, I also believe I do..NO biopsy or testing has been done, other than he put me on a gluten free diet a month ago and been on Dapsone for 2 months now..My rash has pretty much cleared up, other than a few spots here and there. I had a followup yesterday with him, He put me back on dapsone for 6 more weeks and told me to stay on the Gluten Free diet..I suggested a gastro spec., He said, at this point, it would be senseless any testing might come up negative. My family dr. feels i need to see a gastro dr. to diagnose me. What do I do? Who do i go with? Who do i believe? My derm. said i will spend thousands of dollars only to possibly get a false negative. Has anyone else ever been diagnosed with DH without any testing being done? Will the Dapsone only clear up DH? what I mean is, if it were anything other than DH would it clear up with the dapsone and gluten-free diet? Like i said before, I am feeling better and my rash is almost gone, so that is telling me it most likely is DH, plus my gastro problems are almost gone too, no more cramping, bloating or diarrhea. any suggestions would be appreciated, Thanks, Lori

[dhd2000]

If you still have a spot or two left you could ask the dermatologist to biopsy that, just to make sure you've got the correct diagnosis. But if you're working with a dermatologist who know DH, it's probably not completely necessary. My dermatologist took one look and knew immediately it was DH, she did a skin biopsy and it was positive. I went to the gastro specialist, who didn't seem to know that DH and celiac are connected, and he wanted me to go through tons of tests. I thought about it, but decided no. I know how much better I am on the gluten-free diet, skin and digestive, and there's no turning back for me. Also I've read that having a Celiac diagnosis on your medical record can cause you problems with health and life insurance. So at this point all that's on my record is the DH diagnosis, and I'm so much better with the diet. If you need further motivation to stay gluten-free, maybe you could ask for the genetic test rather than the intestinal biopsy. I would agree that after awhile on the gluten-free diet, an intestinal biopsy isn't likely to be accurate. The genetic test would be though. Hope that helps!

Denise

MY dermatologist firmly believes I have DH, I also believe I do..NO biopsy or testing has been done, other than he put me on a gluten free diet a month ago and been on Dapsone for 2 months now..My rash has pretty much cleared up, other than a few spots here and there. I had a followup yesterday with him, He put me back on dapsone for 6 more weeks and told me to stay on the Gluten Free diet..I suggested a gastro spec., He said, at this point, it would be senseless any testing might come up negative. My family dr. feels i need to see a gastro dr. to diagnose me. What do I do? Who do i go with? Who do i believe? My derm. said i will spend thousands of dollars only to possibly get a false negative. Has anyone else ever been diagnosed with DH without any testing being done? Will the Dapsone only clear up DH? what I mean is, if it were anything other than DH would it clear up with the dapsone and gluten-free diet? Like i said before, I am feeling better and my rash is almost gone, so that is telling me it most likely is DH, plus my gastro problems are almost gone too, no more cramping, bloating or diarrhea. any suggestions would be appreciated, Thanks, Lori

[LoriC]

If you still have a spot or two left you could ask the dermatologist to biopsy that, just to make sure you've got the correct diagnosis. But if you're working with a dermatologist who know DH, it's probably not completely necessary. My dermatologist took one look and knew immediately it was DH, she did a skin biopsy and it was positive. I went to the gastro specialist, who didn't seem to know that DH and celiac are connected, and he wanted me to go through tons of tests. I thought about it, but decided no. I know how much better I am on the gluten-free diet, skin and digestive, and there's no turning back for me. Also I've read that having a Celiac diagnosis on your medical record can cause you problems with health and life insurance. So at this point all that's on my record is the DH diagnosis, and I'm so much better with the diet. If you need further motivation to stay gluten-free, maybe you could ask for the genetic test rather than the intestinal biopsy. I would agree that after awhile on the gluten-free diet, an intestinal biopsy isn't likely to be accurate. The genetic test would be though. Hope that helps!

Denise

thanks Denise, you have helped me a lot..I think i'm going to go with my "gut" instinct here and trust my derma. diagnosis..now when i go to see another dr. or dentist, do i tell them i have been diagnosed with DH or celiacs? see this is where i'm confused. Also, I didn't think insurance companies were allowed to deny due to preexisting illnesses..anyone else know about this? Thanks, Lori

[Ursa Major]

I just want to mention that with a diagnosis of DH, you automatically have a firm diagnosis of celiac disease. Not all people with celiac disease have DH, but all people with DH have celiac disease. celiac disease is the only thing that causes DH. And the only valid treatment for it is the gluten-free diet. The Dapsone is only used to help clear up symptoms faster, but shouldn't be needed any more after the rash clears up.

People diagnosed with DH can have some outbreaks for up to two years after starting the gluten-free diet, as it may take that long for the gliadin deposits under the skin to be gone, which cause the rash. After that, you should only get the rash if you eat gluten (on purpose or by accident).

So, anybody who works for an insurance company who truly understands what DH is, will know you have celiac disease, even without any further testing.

[wowzer]

I wasn't diagnosed officially. I'm sure I do have DH. When I searched ithcy rashes, it was the one thing that made sense. I had many rashes through my life. I went gluten free the beginning of this year which is enough diagnosis for me.

[LoriC]

I just want to mention that with a diagnosis of DH, you automatically have a firm diagnosis of celiac disease. Not all people with celiac disease have DH, but all people with DH have celiac disease. celiac disease is the only thing that causes DH. And the only valid treatment for it is the gluten-free diet. The Dapsone is only used to help clear up symptoms faster, but shouldn't be needed any more after the rash clears up.

People diagnosed with DH can have some outbreaks for up to two years after starting the gluten-free diet, as it may take that long for the gliadin deposits under the skin to be gone, which cause the rash. After that, you should only get the rash if you eat gluten (on purpose or by accident).

So, anybody who works for an insurance company who truly understands what DH is, will know you have celiac disease, even without any further testing.

Thank you so much, that is exactly what my derm. said too..but now i'm wondering will my health inurance or life insurance drop me? or if my husbands insurance should change, can they deny me? I honestly didn't think they were allowed to do that anymore. Thanks again, Lori

[Ursa Major]

Thank you so much, that is exactly what my derm. said too..but now i'm wondering will my health inurance or life insurance drop me? or if my husbands insurance should change, can they deny me? I honestly didn't think they were allowed to do that anymore. Thanks again, Lori

Lori, I don't think they are allowed to drop you if you are already a client when diagnosed. And not all companies care about the celiac disease diagnosis, either. I hope you'll never have that problem.

Oh, and yes, you certainly should tell a dentist or new doctor that you have celiac disease!

[mommyagain]

The only people I know of who have had problems with getting health insurance at normal rates due to health conditions are those who cannot get group insurance for whatever reason, usually self-employed. I also know someone who was self-employed (private insurance) and recently went to work for a corporation JUST to get group health insurance when the spouse was diagnosed with cancer. He took a pay cut, but his health insurance premiums were going to be over $1500/month (up from <$500).

I don't know for sure that being diagnosed with celiac (or DH) would necessarily increase your premiums for private insurance, but it's considered insurance fraud if you have been officially diagnosed with something and don't disclose it (when purchasing private insurance).

I don't know much about life insurance. I would imagine that purchasing through a group plan (like your employer) would be less restrictive and less expensive than private. With private, you may have the same requirements to disclose any health conditions, but it would probably be limited to what you have been "officially" diagnosed with.

Like Ursa Major said, you do need to tell other doctors and dentists, so they can take precautions while you are under their care. But, any info you provide to them is NOT an official diagnosis so would not count as something you need to disclose to a private insurance company. Also, you can always say "severely gluten-intolerant" rather than celiac.

[Franceen]

My story is very similar. I had an allergist who, along with my own research (and years of rash and negative allergy tests) decided that it was DH and Celiac once 1) The Dapsone cleared it up initially and 2) when it came back after stopping Dapsone, it cleared up again (more slowly) by going STRICTLY 100% gluten-free - vice Gluten-lite.

I had negative skin biopsies after being gluten-free for 6 months and they said that I would have to eat a ton of Gluten for at least 6 weeks to get a good test OF ANY KIND, including endoscopy/biopsy and skin biopsy.

I went to Gastroent. who did same thing as yours: said "hmmm I didn't know that DH was related to Celiac disease - and I have a patient who that info might help me dix her!"

They wanted to do endoscopy but the allergist said that it would probably show nothing.

So, I have diagnosis of DH and Celiac using Dapsone and gluten-free Diet success as the criteria for the diagnosis.

As for insurance, it depends on how you got your policy and if it's through a group, employer, etc. My husband and I both work for the Federal Gov. and they can't take away our insurance for anything (and can't raise price either).

It has been 1 year and 6 months since I've been dx and strictly gluten-free. I still break out on my ankles/shins a little bit and sometimes on the back of my hand. It appears to be related to accidental glutening but it is also going away gradually. I don't know if I'm getting better at restaurant eating or if it's the natural course. Could be either!

I have NO desire or need to have tests say "yup you are a Celiac" - I know the cure, it works and I'm getting very close to rash and itch free.

I think you might come to same conclusion!

[LoriC]

My story is very similar. I had an allergist who, along with my own research (and years of rash and negative allergy tests) decided that it was DH and Celiac once 1) The Dapsone cleared it up initially and 2) when it came back after stopping Dapsone, it cleared up again (more slowly) by going STRICTLY 100% gluten-free - vice Gluten-lite.

I had negative skin biopsies after being gluten-free for 6 months and they said that I would have to eat a ton of Gluten for at least 6 weeks to get a good test OF ANY KIND, including endoscopy/biopsy and skin biopsy.

I went to Gastroent. who did same thing as yours: said "hmmm I didn't know that DH was related to Celiac disease - and I have a patient who that info might help me dix her!"

They wanted to do endoscopy but the allergist said that it would probably show nothing.

So, I have diagnosis of DH and Celiac using Dapsone and gluten-free Diet success as the criteria for the diagnosis.

As for insurance, it depends on how you got your policy and if it's through a group, employer, etc. My husband and I both work for the Federal Gov. and they can't take away our insurance for anything (and can't raise price either).

It has been 1 year and 6 months since I've been dx and strictly gluten-free. I still break out on my ankles/shins a little bit and sometimes on the back of my hand. It appears to be related to accidental glutening but it is also going away gradually. I don't know if I'm getting better at restaurant eating or if it's the natural course. Could be either!

I have NO desire or need to have tests say "yup you are a Celiac" - I know the cure, it works and I'm getting very close to rash and itch free.

I think you might come to same conclusion!

Thanks so much, I refuse to go back on gluten for testing, I"m going to see the gastro spec. just to talk to him and see what he has to say, if he starts the doubts with me, I'm not going to push it with him, I know i feel better, my family has told me i look much better, I'm not so tired anymore, i don't get migraines anymore, it's amazing really. I am losing a bit of weight, i was never heavy to begin with, that worries my family, but i say its from not eating fast food LOL which is a GOOD thing. I think it's only natural to lose some weight after giving up bread and all the goodies that go along with gluten, can't say i don't miss some of it, but i'm sure it will get easier on me. When i get that urge i just tell myself NO, and think back of the tummy pain and bathroom, that sure takes the urge away fast..

As for my insurance its a group plan thru my husbands work, I don't think they would drop me or raise our rates, and if they do i'll just write my congressman or whoever i can. Thanks again, Lori

[dhd2000]

Regarding the insurance thing, I think if you have a group policy, you should be fine. If you're applying for an individual policy (like for self employed, as we are) it can be an issue, not necessarily that they will deny you coverage, but it could increase the cost quite a bit. I've heard the same for life insurance, but I don't know. I figure that I do have an official diagnosis of DH and if even my gastro specialist didn't know that meant celiac, who knows if an insurance underwriter would know. I will certainly list DH as a previous condition on any application, but not celiac.

Good luck getting better with the gluten-free diet! It's hard at first, but you fall into a new, healthier routine and feel so much better!

Denise

Thanks so much, I refuse to go back on gluten for testing, I"m going to see the gastro spec. just to talk to him and see what he has to say, if he starts the doubts with me, I'm not going to push it with him, I know i feel better, my family has told me i look much better, I'm not so tired anymore, i don't get migraines anymore, it's amazing really. I am losing a bit of weight, i was never heavy to begin with, that worries my family, but i say its from not eating fast food LOL which is a GOOD thing. I think it's only natural to lose some weight after giving up bread and all the goodies that go along with gluten, can't say i don't miss some of it, but i'm sure it will get easier on me. When i get that urge i just tell myself NO, and think back of the tummy pain and bathroom, that sure takes the urge away fast..

As for my insurance its a group plan thru my husbands work, I don't think they would drop me or raise our rates, and if they do i'll just write my congressman or whoever i can. Thanks again, Lori