Dh Or No Celiac? I Am Soo Confused.

[lil'chefy]

After about 2 years of testing, I was diagnosed with DH at the age of 13. I am now 35. I had been on Dapsone (100mg) for 20 years, until I decided to stop taking it, about 6 months ago. To my fascination, I have not had one sign of DH. I was diagnosed via skin biopsy, by the way, 3 skin biopsies, at different times over those 20 years. A few years ago I was having double over stomach pain every day. I no longer do. I have only been gluten free for a few weeks at a time, here and there. The diet is very expensive and when I was first diagnosed the doctor told my mom that Dapsone was the only way, and that going Gluten-Free was impossible. I know that the diet is still more expensive than everyone else's, but more available and cheaper than it ever has been. My question is this: I show no signs anymore. I had a blood test to check for it and I tested negative for it. I have achy tight joints, sloshing and gurgling in my staomach, but more major pain. I had an endoscopy done to confirm, and the doctor said that he didn't see any signs of damage. I know that he should have taken biopsies to confirm, but he didn't. Do I have celiac or not? I asked my derm about it, and she said that if I am not showing signs of DH than to live it up. I talked to my GI and he said the same, along with my family doc. How could I have had such a bad case and it just be gone? I used to bite down on a wash rag just to let the water from my bath or shower touch my raw skin from such intense scratching. I do not want to develop a stomach tumor or osteoporosis. My mother is having the most profound bloating ever, and just had an endocrine tumor removed from her stomach. She tests negative for celiac via blood test, but she has so many symptoms.. I am so confused. Any info would be helpful. Is anyone in my same boat?

[Di2011]

Hi lil'chefy,

Are you currently or recently gluten free and if not can you describe your diet, how much gluten in particular?

If I was a gambler I'd say that off dapsone and if still having a gluten full diet that it may just be a matter of time before it sets in.

I think you should read as much as you can here and on other websites about DH and gluten intolerance. You seem to have very un-fond memories of your DH ((as I am experiencing now)) and you don't want to run the risk of it recurring when life should be full. Hopefully some of our other members can give you some insight into their recurrence of DH post-Dapsone.

BTW my grocery bill is lower than ever going Gluten free. It is a medical professions myth that it has to be expensive. Keep it simple and fresh and keep processed food to a minimum.

[Roda]

A diagnosis of DH is a diagnosis of Celiac. Your derm, family doctor, and GI doc are giving you very bad advice. There are discussions on this board about people with DH are still celiac even though there may not be gut damage. I can't comment on the DH and dapsone since I fortunately do not suffer from it. It is autoimmune and the only way treat it is with the gluten free diet. My best advice for you is to go gluten free. As for cost, it only has to be as expensive as you make it.

[lil'chefy]

Hi lil'chefy,

Are you currently or recently gluten free and if not can you describe your diet, how much gluten in particular?

If I was a gambler I'd say that off dapsone and if still having a gluten full diet that it may just be a matter of time before it sets in.

I think you should read as much as you can here and on other websites about DH and gluten intolerance. You seem to have very un-fond memories of your DH ((as I am experiencing now)) and you don't want to run the risk of it recurring when life should be full. Hopefully some of our other members can give you some insight into their recurrence of DH post-Dapsone.

BTW my grocery bill is lower than ever going Gluten free. It is a medical professions myth that it has to be expensive. Keep it simple and fresh and keep processed food to a minimum.

What I guess I am trying to say is, if I don't have to go gluten free, I don't want to. It is hard to warrant going Gluten-Free if not currently experiencing any symptoms. That said, it is a possibilty that I may have silent symptoms. I take better care of my teeth than anyone I know, but everytime I go to the dentist for a cleaning, I need three fillings. I eat healthier than anyone I know, but I am still anemic. I am currently studying to become a dietician, that way I can figure out some answers for myself. For some reason it seems like the GI doc knows nothing about DH and the derm knows nothing about celiac. Are there any doctors that anyone knows of that are well versed in both? I live in Dayton Ohio. Maybe I could go to the Cleveland clinic, but I think you have to get a referral, and since none of the docs here want to take my situation seriously....

[pricklypear1971]

What I guess I am trying to say is, if I don't have to go gluten free, I don't want to. It is hard to warrant going Gluten-Free if not currently experiencing any symptoms. That said, it is a possibilty that I may have silent symptoms. I take better care of my teeth than anyone I know, but everytime I go to the dentist for a cleaning, I need three fillings. I eat healthier than anyone I know, but I am still anemic. I am currently studying to become a dietician, that way I can figure out some answers for myself. For some reason it seems like the GI doc knows nothing about DH and the derm knows nothing about celiac. Are there any doctors that anyone knows of that are well versed in both? I live in Dayton Ohio. Maybe I could go to the Cleveland clinic, but I think you have to get a referral, and since none of the docs here want to take my situation seriously....

You are showing autoimmune symptoms. You have stiff, aching joints, teeth problems, you're anemic, and you have a stomach ache. The most likely cause for these symptoms is the disease you were diagnosed with -Celiac Disease.

You've been on dapsone for 20 years and were only on the gluten-free diet intermittently because the dapsone did the job. It's great the med worked for your rash, but it doesn't stop the autoimmune cascade portion of the disease.

Intestinal damage is patchier than usual, and blood tests are notoriously negative in DH Celiacs. Your GI did not even take a biopsy, s/he just "looked" at your intestines. That was not a true and accurate biopsy. The samples should have been taken and examined for microscopic damage. Also, what blood tests were run? A full panel ?

You have received poor medical advice from the beginning.

There are Celiacs who go into remission and are able to go off a gluten-free diet and stay DH clear; however, you did NOT have the correct testing to determine this and you have not been off dapsone long enough to really know if youll stay clear (although I do admit 6 months is encouraging).

DH is known to spontaneously remit, even on a gluten-filled diet (and with GI and other autoimmune damage still active). One reason it is so hard to dx for most, I assume.

You said you've had THREE positive skin biopsies. It sounds like you have DH and you are Celiac.

The prescribed treatment for DH is a gluten-free diet, augmented by dapsone until the antibodies leave your skin and your rash subsides. At that point, the diet should control your rash.

Good doctors are extremely difficult to find. Look for a local Celiac group, they can probably refer you.

[lovegrov]

It sounds like to me you're having symptoms with the aching, bad teeth, anemia, and so on. My father took dapsone for many years and a couple of times his DH just completely disappeared for an extended period of time -- even a couple of years one time. Then it came back. I was on dapsone for 20 years and my DH would wax and wane in severity.

I'd try going gluten-free. It does NOT have to be expensive.

richard

[lil'chefy]

You are showing autoimmune symptoms. You have stiff, aching joints, teeth problems, you're anemic, and you have a stomach ache. The most likely cause for these symptoms is the disease you were diagnosed with -Celiac Disease.

You've been on dapsone for 20 years and were only on the gluten-free diet intermittently because the dapsone did the job. It's great the med worked for your rash, but it doesn't stop the autoimmune cascade portion of the disease.

Intestinal damage is patchier than usual, and blood tests are notoriously negative in DH Celiacs. Your GI did not even take a biopsy, s/he just "looked" at your intestines. That was not a true and accurate biopsy. The samples should have been taken and examined for microscopic damage. Also, what blood tests were run? A full panel ?

You have received poor medical advice from the beginning.

There are Celiacs who go into remission and are able to go off a gluten-free diet and stay DH clear; however, you did NOT have the correct testing to determine this and you have not been off dapsone long enough to really know if youll stay clear (although I do admit 6 months is encouraging).

DH is known to spontaneously remit, even on a gluten-filled diet (and with GI and other autoimmune damage still active). One reason it is so hard to dx for most, I assume.

You said you've had THREE positive skin biopsies. It sounds like you have DH and you are Celiac.

The prescribed treatment for DH is a gluten-free diet, augmented by dapsone until the antibodies leave your skin and your rash subsides. At that point, the diet should control your rash.

Good doctors are extremely difficult to find. Look for a local Celiac group, they can probably refer you.

Thank you for your specific information. Somehow it seems like no one else's situation meets the same criteria as mine. I have point blank asked the GI and the derm if I keep eating gluten, could I be damaging my health. Do they not care? Or are they not knowledgable?

[mushroom]

Thank you for your specific information. Somehow it seems like no one else's situation meets the same criteria as mine. I have point blank asked the GI and the derm if I keep eating gluten, could I be damaging my health. Do they not care? Or are they not knowledgable?

I'm afraid it could be one, or the other, or both

[Di2011]

Do you remember specifically what your DH was like? Can you describe it? Describe how you felt or lived with it?

Given you have other issues that +could+ be gluten related, why don't you just try gluten free? It isn't expensive if you do it sensibly and minimise processed food. It won't harm you if you keep your vits/mins in check with variety of food etc...

You don't need to keep going back to what you describe as questionable specialists. Just try it. If you feel better you will have some answers. If you don't you also can eliminate gluten as your current problem. But you will have to give it a couple of months.

Why not just do it?

[lil'chefy]

Do you remember specifically what your DH was like? Can you describe it? Describe how you felt or lived with it?

Given you have other issues that +could+ be gluten related, why don't you just try gluten free? It isn't expensive if you do it sensibly and minimise processed food. It won't harm you if you keep your vits/mins in check with variety of food etc...

You don't need to keep going back to what you describe as questionable specialists. Just try it. If you feel better you will have some answers. If you don't you also can eliminate gluten as your current problem. But you will have to give it a couple of months.

Why not just do it?

As of last night, I am gluten free. I am going to try it. In the past it has been especially difficult for me b/c I no longer haveevident symptoms. When my Dh showed up I was going through puberty. It covered my scalp, was all over my knees (shin to mid thigh), some on my back, on the insides of my elbows, and all over my bottom. My Mom took me to specialist after specialist. All in all it took 1 1/2 year for me to get a diagnosis. Every time I went to the children's hospital, a team of docs would analyze and take pics of me. It was a hard time for a pubesent 12-13 year old, so embarrassing. When I first started taking Dapsone it had little effect. The doc told me that the Gluten-Free diet would be impossible and not worth even trying.

Sometimes my fingers turn whitish blue, all the blood runs out and they turn numb. I should mention that until DH showed up I received A's and B's in school. After DH I displayed symptoms of ADHD and got poor grades. No one ever told my Mom that ADHD symptoms could result from gluten intolerance, or Dapsone for that matter. Even now, my doc doesn't even know that I took myself off of Dapsone. I have in the past suggested lowering my dose to my doc and she slashes the idea, siting that it could be dangerous for me. My doc would like to medicate me for ADHD, which also hurts my stomach. Again, my teeth keep getting worse. I definitely have anxiety issues and have recently been having panic attacks (dont know if they are related). I should mention that my DH would always resurface, even a little on Dapsone, until I was pregnant with my son, who is know 1 1/2. My OB had me stay on Dapsone with my son. I also have a 4 1/2 year old daughter. I went off of my Dapsone when I was pregnant with her. She had a failure to thrive. The doctors could not figure it out. No matter how much I ate, she didnt gain weight. I was put on bed rest, and she eventually gained enough to sustain herself by birth, but I sometimes wonder if it was due to malabsorption. I suggested it to the OB, derm, GI, all shut me down.

[pricklypear1971]

Oh goodness, you really have been through it haven't you?

Yes, please try a gluten-free diet. I am betting you will find relief in ways you never expected. It takes more than a few weeks - since there is a detox period. You should also be tested for vitamin/mineral deficiencies.

How is your daughter doing now? as you well know, Celiac is genetic and she may well have issues, as well as your son.

Just hang in there, and ask as many questions as you need, vent and scream...

[lil'chefy]

Oh goodness, you really have been through it haven't you?

Yes, please try a gluten-free diet. I am betting you will find relief in ways you never expected. It takes more than a few weeks - since there is a detox period. You should also be tested for vitamin/mineral deficiencies.

How is your daughter doing now? as you well know, Celiac is genetic and she may well have issues, as well as your son.

Just hang in there, and ask as many questions as you need, vent and scream...

My little girl had a huge strawberry hemangioma that blocked off her nasal passages @ birth. She was on prednisone, a very very high dose from 2 months till 14 mos. The meds stopped the hemangioma from getting larger, but she stutters, and is currently getting therapy for her eyes. The tubes in her eyes stopped growing as a result of the prednisone. When she was three she went cross eyed and after taking her to the doc, we found out that her left eye was trying to go blind. She is allergic to ibuprofen, which incidentally has gluten in it. Her preschool is trying to diagnose her with dislexia. She gets terrible headaches, and dislikes soooo many foods. I often wonder if they hurt her stomache and she just doesn't know how to articulate that.... One thing that still confuses me, and I would like the most definitive answer possible is: How can you test negative (blood test) and endoscopy biopsy, but still have DH? I just don't get it?

[pricklypear1971]

I'm very sorry to hear your daughter has been through so much.

The thought is the blood tests are sensitive to the intestinal damage in Celiacs...and since DH Celiacs tend to gave the damage on the skin (and tie up iga in the skin) that is why they are more likely to be falsely negative.

Also, if you were on steroids at any point around testing that can give a negative result, since steroids suppress the immune system and are actually used to treat refractory celiac disease.

Children are also known for negative blood tests, since they haven't had time to build high levels of antibodies.

Also, which blood tests were you given? Get a copy from the doctor. Additionally, you weren't negative on your biopsy - you essentially did not have a biopsy performed since no samples were taken. Correctly performed biopsies are sometimes read as negative, also. There is a recent study showing the differences in readings based on facthatility the reading was performed in. Additionally, sometimes too few biopsies are taken, 2-3 when closer to 8 are needed.

[Skylark]

You need to keep reading about celiac if you think you don't have evident symptoms. Joint pain is a sign of celiac. So is anemia from iron malabsorption, poor teeth, and the anxiety. Anxiety can also be caused either directly by gluten, or by nutritional deficiencies from the malabsorption. Your hands turning cold and white/blue is likely Reynaud's syndrome (ask your doctor to verify), which is another autoimmune disease. Celiacs tend to get other autoimmune diseases when they keep eating gluten.

Your daughter needs to try gluten-free too. Get her tested, but it sounds to me like your family's form of celiac/gluten intolerance doesn't show up very well in bloodwork so she needs a trial of the diet. Celiac is genetic and your daughter really sounds like she has it. Don't put her through years of misdiagnosis like you endured!

Not everyone with DH has a positive blood test. Negative endoscopy is unusual, but often low-level damage like lymphocytic infiltration is ignored by doctors. Some only look for the most extreme types of celiac damage. With the positive DH biopsies, you have documented celiac autoimmunity so I'm not sure why you are putting so much weight on the blood work. It is possible to go into remission from DH but you have too many other celiac symptoms to consider a complete remission from gluten-caused autoimmunity.

I am very glad to read that you have gone gluten-free because you need to be on the diet. It will likely help the joint pain, the anemia, and the anxiety, and prevent you from developing more autoimmunity, neurologic damage, and lower your cancer risk since your mom had a GI cancer. By the way, I also find taking fish oil and B-complex helpful for anxiety.

There are a lot of threads on doing the gluten-free diet on a budget. Basically you avoid the expensive processed gluten-free foods and eat naturally gluten-free things like rice and potatoes.

[lil'chefy]

I'm very sorry to hear your daughter has been through so much.

The thought is the blood tests are sensitive to the intestinal damage in Celiacs...and since DH Celiacs tend to gave the damage on the skin (and tie up iga in the skin) that is why they are more likely to be falsely negative.

Also, if you were on steroids at any point around testing that can give a negative result, since steroids suppress the immune system and are actually used to treat refractory celiac disease.

Children are also known for negative blood tests, since they haven't had time to build high levels of antibodies.

Also, which blood tests were you given? Get a copy from the doctor. Additionally, you weren't negative on your biopsy - you essentially did not have a biopsy performed since no samples were taken. Correctly performed biopsies are sometimes read as negative, also. There is a recent study showing the differences in readings based on facthatility the reading was performed in. Additionally, sometimes too few biopsies are taken, 2-3 when closer to 8 are needed.

I had a celiac panel run, whatever that means. I wasnt negative on my biopsy, endoscopy wise. I was positive 3 times with the DH skin test. As a matter of fact last year I had an extensive test for lupus, as I was getting spontaneous temperatures of 102, was sick almost nonstop with respiratory stuff for about 3 months. Also had one eye half open looking....Initially on a blood test I came up positive for a lupus marker, then they did a specific lupus panel, and I didnt have it. So, if I am not showing DH on my skin and did test negative via endoscopy and test negative via blood test, I can still be doing damage to my body? Don't get me wrong, I am going Gluten-Free if it kills me this time, it is the only thing that makes sense, but this strange negative positive diagnosis elludes me.

[pricklypear1971]

If you were positive on a skin test 3 times for DH then you have a positive DH biopsy, which is a positive celiac dx.

The endoscopy you described in your first post did not result in a biopsy - they just "looked" at your small intestine? If they didn't take samples from your intestine you did not have an endoscopic biopsy - you had a screwed up, incomplete endoscopy.

Why the blood tests come up negative, who knows. Many people will tests negative and still have gluten issues.

You do need copies of all testing for your records. Read them and see what tests were run and the results. You'd be surprised at the differences between what the docs say and reality re: tests and results. At this point you really do not know what tests were run, and what the results were so I'd reserve judgement until I get them.

I suggest you read more about DH specifically, re: testing. Look on PubMed and google, read the source citations and google more.

[Skylark]

A positive DH test is a positive test for celiac, and you've had it three separate times. There is no question about you having celiac disease.

Celiac autoimmunity takes on all sorts of different forms, some of which never show up on blood & endoscopy. It can shift and change with time, and it's not uncommon for DH to go into remission but other autoimmunity to hang around. The blood tests are pretty specific for the GI autoimmunity. Neurological autoimmunity and joint autoimmunity are the most common ones that doctors miss with a standard celiac panel. Also, as PricklyPear mentioned, some doctors are better than others at doing the endoscopies in the first place.

If your DH was gone and you were hale and healthy eating gluten, maybe you could think about remission but you're describing a LOT of health issues, all of which can be caused by celiac disease.

[lil'chefy]

Gluten-Free 24 hours! Making pancakes for the rest of my family :-( right now. Eventually (soon) I will change my little girls diet. That will be soooo hard though. She is sooo picky and not at all open to trying new things.

[GFinDC]

Gluten-Free 24 hours! Making pancakes for the rest of my family :-( right now. Eventually (soon) I will change my little girls diet. That will be soooo hard though. She is sooo picky and not at all open to trying new things.

You don't sound real open to trying new things yourself! LOL Just kidding. You obviously know something is wrong or you wouldn't be here asking questions and investigating. You seem concerned that you didn't pass every celiac test with 100% positive flying colors. But the tests are not 100% accurate to begin with,so that is not surprising at all. You can have a negative blood test and still have celiac. Especially if you were on immune suppressers at the time of the test. They should be negative in fact.

I had negative blood tests also, but I had to wait 3 months to get blood drawn after I went gluten-free. So the antibodies had receded by that time. But after I went gluten-free I stopped having many symptoms. When people who are gluten free already decide they want to get diagnosed, the reccomendation is generally to eat gluten for 3 months to give the antibodies and damage time to build up so the tests might detect them. And there is no guarantee they will pass the tests even then. Because the tests are not perfect. The best test is how your own body reacts, and not what an imperfect test process says.

Only people with celiac disease get DH, DH is a condition that is exclusive to celiacs. You have DH, you have celiac, end of story. No other tests needed.

It is good you are trying the gluten-free diet now, congrats on taking charge of your health! It is best to avoid most of the gluten-free processed foods to start with. If you can buy meats and whole veggies (frozen is fine) and make your meals from scratch you can save money and have healthier food to eat. Processed gluten-free foods generally have more starch and sugar than their gluteney counterparts. A good way to start is to avoid eating anything with more than 3 ingredients on the label. And those 3 ingredients should be foods, not chemicals or preservatives or colorings. Chicken, hamburger, fish etc and veggies are good foods. Nuts can be good too and whole fruits. Try a search on breakfast or lunch or dinner or snacks on this site and you find lots of threads with ideas.

Another problem we can have is low vitamins and minerals levels from malabsorbtion. You should get your vitamins checked. Some of us take B-12 and D and other vitamins to help get things back in balance. Watch out for soy and dairy at first as they can cause problems along with oats, wheat, barley and rye. There are various milk subs available like almond milk and hemp milk now. General Mills makes several gluten-free cereals like Corn Chex etc. Betty Crocker makes gluten-free cake and brownie mixes too. Van's makes gluten-free waffles, you can find them in the freezer section. Mission corn tortillas are a cheap gluten-free wrap option.

You really need a new doctor too. Let us know how you are doing as the start is sometimes tough. It does get easier as you go along though.

[Skylark]

Gluten-Free 24 hours! Making pancakes for the rest of my family :-( right now. Eventually (soon) I will change my little girls diet. That will be soooo hard though. She is sooo picky and not at all open to trying new things.

If your guess is correct that she is picky from stomach-aches, her eating habits should improve fairly quickly. My super-picky nephew asked to try one of my rice cakes out of curiosity, and it passed the picky kid test. He likes them with a little jelly. Amy's gluten-free macaroni and cheese and Glutino pretzels have also passed with flying colors.

Other kid-friendly gluten-free foods are rice, Ore Ida Tater Tots (I don't know if generic ones are gluten-free), Rice Chex, and Van's frozen gluten-free waffles.

[sa1937]

Gluten-Free 24 hours! Making pancakes for the rest of my family :-( right now. Eventually (soon) I will change my little girls diet. That will be soooo hard though. She is sooo picky and not at all open to trying new things.

She can have gluten-free pancakes! And a lot of other things, too. My gluten-eating granddaughter loves gluten-free Bisquick pancakes as well as those made with Pamela's Baking & Pancake Mix. We've also made waffles from both of those mixes.

It does get much easier after you become more familiar with the diet. I know it can be overwhelming at first for many of us.

And welcome to the forum!

[lil'chefy]

If your guess is correct that she is picky from stomach-aches, her eating habits should improve fairly quickly. My super-picky nephew asked to try one of my rice cakes out of curiosity, and it passed the picky kid test. He likes them with a little jelly. Amy's gluten-free macaroni and cheese and Glutino pretzels have also passed with flying colors.

Other kid-friendly gluten-free foods are rice, Ore Ida Tater Tots (I don't know if generic ones are gluten-free), Rice Chex, and Van's frozen gluten-free waffles.

happy about the tator tots! Generic are not Gluten-Free! Thanks