I've Never Heard Of Celiac Or Dh, But Maybe That's My Answer...

[Guest mmc]

I've never heard of either of these conditions, but when reading through this forum, the puzzle starts to fit together, if you know what I mean.

The first piece: Since I was 15 I've been getting this rash of tiny blisters, most often on my hands, the first time I got it, it covered both my hands completely and it itched like nothing I've ever felt. My mom took me to several doctors who's combined dx was an allergy to latex and/or plastic. So, I immediately changed everything I did to exclude as much latex and plastic as I could, even so far as to wrap 20 oz bottles and plastic ink pens with a piece of cloth so my skin does not have contact. I'm 25 almost 26 now and I have this rash constantly. They blister, I itch, they pop, dry, and reform. No matter what I do.

The next piece: After I had my youngest daughter in 2002, I began to have many medical problems. First, what was dx'd as IBS. Given medication, 4 years later, still no change, just as bad as always. Then, I began to have extreme deficiencies in many nutrients, doctors said take more vitamins. Again, 4 years later, no change. Next, no matter how much I take care of my teeth, nothing helps. I brush my teeth 3 to 5 times a day, floss, anti-cavity mouthwash, and I have still had to have several of my teeth pulled and replaced (most of the top row) because the enamel was just disappearing. My dentist, who is an uncle of my husband, doesn't believe me. He says my teeth are clean, but I must not be taking care of them.

Next I'm tired all of the time, but when it's night time, find myself unable to sleep. My feet are tingly, cold, and sweaty all of the time.

So lets review:

1. blistery rash

2. IBS

3. nutrient deficiencies (multiple)

4. tooth problems

5. fatigue/sleeplessness

6. cold, sweaty, tingly feet

Now am I crazy or does this sound about right? Any help would be appreciated.

[tiffjake]

Well, I don't have dh (as far as I know.....I have some questionable spots though, but I am not sure if I would call them dh and they don't look like the pics of dh I have seen, but they do flare up when I am glutened....so I dont know) but I do have celiac, and my symptoms are very simular to yours. I am not sure if you have a good relationship with your doc and you could go to them with all of your info, but I would ask for the blood test for celiac if I were you. If you don't have that kind of relationship with your doc (and I didn't) then you can get tested through outside labs like EnteroLab (I used them) or York (I haven't used them).

Some people recomend trying the gluten-free diet to see how you feel. I might recomened that if you are not able to pay for the EnteroLab test or if you would rather try that first, then go back to eating gluten to see how you feel. But you don't want to go gluten-free, then feel better, then take the test, because the test measures your bodies reaction to gluten, so if you aren't eating any, then there will be a negative test result. I took the EnteroLab test, got a positive test, went gluten-free, then went to my doc for confirmation, and my bloodwork from his office was inconclusive......but the doc and I think it was because I was gluten-free for almost a month at that point.

Anyway, welcome to the board! Hope that was helpful! God Bless, Tiff

[pixiegirl]

Well it certainly sounds right to me... why don't you start with asking your doctor to do the blood tests for Celiac ... and see what they turn up (remember to continue to eat gluten until you've had the tests). Depending on what the results are you can go from there.

Susan

[Guest cassidy]

Sounds like you have had a rough time. My advice would be to try a gluten free diet. The reason is because if you go to the doctor and ask for the celiac blood test, they may treat you just like the dentist. Then, if your blood test is negative (they are only about 50% accurate and can be used to determine if you are positive, but not able to rule out celiac) then your doctor may really treat you the way the dentist does. I would recommend getting a blood test asap and then going gluten free that day. This way by the time you get the results you may be able to tell if the diet is working for you.

Since you have been through so much with no relief, if you are at the "I will try anything" stage, then I would definitely try the diet. Unfortunately, many doctors still don't have a clue about celiac. It took me about 2 weeks to feel even the a little better, so you have to give the diet time.

Also, all my molars came in with holes in them. They sealed them after they put fillings in. I've had several other fillings because little spots of enamel wear off and there are dents in my teeth. I've only been gluten-free for 4 months, so I'm hoping that will all slow down after a while. The enamel thing was one of those symptoms that really made me realize that celiac is my problem. I searched and searched and couldn't find another explanation that made sense to me.

Hope you figure things out.

[ravenwoodglass]

I've never heard of either of these conditions, but when reading through this forum, the puzzle starts to fit together, if you know what I mean.

The first piece: Since I was 15 I've been getting this rash of tiny blisters, most often on my hands, the first time I got it, it covered both my hands completely and it itched like nothing I've ever felt. My mom took me to several doctors who's combined dx was an allergy to latex and/or plastic. So, I immediately changed everything I did to exclude as much latex and plastic as I could, even so far as to wrap 20 oz bottles and plastic ink pens with a piece of cloth so my skin does not have contact. I'm 25 almost 26 now and I have this rash constantly. They blister, I itch, they pop, dry, and reform. No matter what I do.

The next piece: After I had my youngest daughter in 2002, I began to have many medical problems. First, what was dx'd as IBS. Given medication, 4 years later, still no change, just as bad as always. Then, I began to have extreme deficiencies in many nutrients, doctors said take more vitamins. Again, 4 years later, no change. Next, no matter how much I take care of my teeth, nothing helps. I brush my teeth 3 to 5 times a day, floss, anti-cavity mouthwash, and I have still had to have several of my teeth pulled and replaced (most of the top row) because the enamel was just disappearing. My dentist, who is an uncle of my husband, doesn't believe me. He says my teeth are clean, but I must not be taking care of them.

Next I'm tired all of the time, but when it's night time, find myself unable to sleep. My feet are tingly, cold, and sweaty all of the time.

So lets review:

1. blistery rash

2. IBS

3. nutrient deficiencies (multiple)

4. tooth problems

5. fatigue/sleeplessness

6. cold, sweaty, tingly feet

Now am I crazy or does this sound about right? Any help would be appreciated.

No your not crazy, I would try the diet if I were you after I called the doctor monday morning and asked for the COMPLETE celiac panel. He should be able to just give you a lab slip, then after the blood draw go on the diet, don't wait for the results there are too many false negatives anyway for them to be relied on. Boy can my family identify with your dental problems. I've cryed in the chair more than once with my last dentist because of being berated for not taking care of my teeth. Also make sure you are using a soft toothbrush and a gluten-free toothpaste, Crest is one of them. And don't overbrush your enamel is defective (most likely from gluten intolerance) and soft and you don't want to wear it away by brushing too much or too hard.

[tarnalberry]

You certainly could have celiac with those symptoms. I would encourage you to ask your doctor for the full celiac blood panel, ask for a referral to a dermatologist to get the rash biopsied, and do NOT start the diet until you get the blood tests back and find out if the doctor wants to do an endoscopy with intestinal biopsy as well. (The diet could alter those results.) At the moment, many doctors still want to run that test, and they may give you conflicting results if you go on the diet prematurely.

[mouse]

If you decide to go for the blood tests, be sure they do the full panel. My doctor only did one and it came back positive. Thursday I was at my doctors and I saw the PA. I informed him about the tests and gave him my copy of Dr. Green's book to read. He was going to photocopy the page on the required tests so that they are all run in the future. We had been talking about a child who he just diagnosed with diabetes and I had been telling him that the book reccommends that people with diabetes also get tested for Celiac. At least the PA wants to learn. And like others have said be sure and keep eating gluten, if you want the tests run. Also, I have just read that with D H they do not take the biopsy from an eruption but from a area right next to it. Good Luck and welcome to the forum.

[Guest mmc]

Thank you everyone who has replied. I really appreciate it. I found this forum very late last night and since have felt a sense of relief. It seems like I've finally got most of the pieces of the puzzle. I'm going to call my mom and talk to her because as I think about it more, she has symptoms too, just not the same as mine. And from what I've read, celiac is hereditary. I'm certainly going to be calling my doctor, but I'm going to bet that he'll think I'm crazy.

Thank you so much for the advice. I'll keep you posted.

[ms-sillyak-screwed]

..... dx was an allergy to latex and/or plastic.

1. blistery rash

2. IBS

3. nutrient deficiencies (multiple)

4. tooth problems

5. fatigue/sleeplessness

6. cold, sweaty, tingly feet

I also agree with everthing posted here. A few things I'd like to point-out since you are a newbie. I've been fighting this around 6 years now Gluten & Dairy Free and (free of soy, legume and deadly night shade veggies for almost year now)...

If you go for a blood test -- you MUST have gluten in your system and even at that you can come back with a false negative. So like someone said go for the test. Then when you walk out of the lab, start your new life gluten free.

This is [one of] the test you must ask for a complete Celiac panel to be performed:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

You also might want to have your thyroid levels checked. You cold feet might be a sign...

I found this out the hard way -- Also if you are allergic to LAYTEX (like I am) you are more then likely allergic, senstive or reactive to AVOCADO and foods in that family.

I had the same problem with my teeth. Use a SOFT TOOTH BRUSH and don't brush really hard.

One other thing many Celiac's have a problem with what is known as seconary food senstivities or allergies. Like what happened to me. I had a problem with dairy since birth, and since have a MAJOR PROBLEM with SOY. It's in everything. (For me it cause a problem with my thyroid.) SOY is in the LEGUME family and many can be a sourse of a problem. (google legumes and see) Dr.'s don't tell you but for many of us Celiac's SOY is poison. There are many threads on this site either way pro and con. I'd like to err on the safe side and remove it from my diet.

Pick up a couple of great book that will help you understand the disease. THE PALIO DIET is one and the other is DANGEROUS GRAINS. Both books will help guide you through and give you correct information.

Stay tunned in here. Those on this site are wonderful loving people that care.

[Ursa Major]

Since you have this rash all of the time, and a skin biopsy that confirms DH will automatically give you a firm diagnoses for celiac disease, why not start with that? If you are already a patient with a dermatologist, you might want to ask him to do a skin biopsy (from at least a couple of different spots) to be tested for DH. If you don't have a dermatologist, you need to ask your doctor for a referral.

If you need a referral first, it could take a while to see a dermatologist, and you might want to do the blood test, to at least get an idea if you could be right with your suspicions. But I would hold off on an endoscopy until after the skin biopsy results are in. If you get diagnosed with DH, there will then be no need for an endoscopy any more. Because DH is ALWAYS caused by celiac disease, and the only valid treatment is the gluten free diet.

[Guest mmc]

I talked to my husband today, just about the possibility that this could be the problem, and although overall supportive, he kept saying "Well, honey, you're self diagnosing yourself. You really shouldn't do that." I know he meant well, but I'm tired, hungry (but can't eat anything...or if I do I'm running for the restroom), feel horrible, and stressed out (we're moving cross-country in a month) and it made me want to scream.

Good news, sort of, I talked to my mother who has many medical problems including severe anemia, various cancer scares (newest being thyroid cancer), nerve issues, tooth issues, and a skin rash dx'd as ecxema. Her doc is having her do an endoscopy this week on Thursday and I mentioned that I was going to go in and get tested for Celiac. After explaining briefly and mentioning that it was a hereditary disease, she decided that she would have her doc test for that also, since he'll already be in there. Not to say that a positive dx for her would atomatically mean a positive dx for me, it would certainly make me look less crazy when I go to the doc and request the tests for myself.

I do believe that my first stop will be a dermatologist. It seems like it is the easiest and most dependable first option. So hopefully, I'll get it figured out soon so I can fix the problem and begin to feel better. The possibility of having celiac has given me a second wind in regards to my education. I am a classically trained chef working on a BA in dietetics. So the possibility alone of helping people with celiac is wonderful. All I've wanted out of my life is three things, 1. to put my children through college so they would not have to struggle as I am, 2. to grow old happily with my husband, and 3. to help people. Maybe this disease is a message on the path I'm supposed to take?

Last, I would just like to thank everyone for being so supportive and so nice. I'm glad that I found this forum; yet upset that I couldn't have found it earlier.

[Canadian Karen]

Hi mmc!

I think you are one smart cookie! I agree that going the dermatologist route would be the most productive route. If you get a positive biopsy, there is your confirmation right there, as DH is always caused by celiac.

Also, keep another thing in mind..... If tests come back negative for celiac (because the tests do yield a false negative far too often.. ) remember that at the very least, you have gluten intolerance without actually having celiac, which will give you the exact same problems you are experiencing anyway.

My advice would be to go the testing route, DH then bloodwork (then possibly endoscopy). But even if you do not get a confirmation of celiac, I highly recommend going gluten free anyway! So many people have had negative bloodwork but TOTALLY POSITIVE response to the gluten free diet.

Oh, and I also highly recommend getting "Dangerous Grains", it's a MUST READ!

Hugs and again welcome!

Karen

[Guest mmc]

Alright, this goes back to me having never heard of Celiac or DH, but finding this board certainly has made me take a closer look at the things I eat. Well, today has been incrediably eye opening.

This morning, I woke up, my children were begging for French Toast for breakfast. So I make them peanut butter french toast. Peanut Butter, egg, milk, wheat bread. I eat breakfast, then run as fast as I can to the restroom. Nothing out of the ordinary, it happens at every meal. My husband says that we haven't been able to enjoy a full meal together since we've been married (a little more than 4 years.)

So, dinner comes around and I decide I'm going to make my family's favorite meal. Chicken & rice with roasted garlic cream sauce and balsamic vin. And guess what! No mad dash to the r/r. No stomach pains. Nothing. And I checked, not a lick of gluten in anything.

WOW! I think I've finally figured it out! I can't completely stop the gluten until after I get tested, but after the test...I'm gluten free.

[tiffjake]

My story is so simular to yours (married for four years, husband jokes about bathroom visits, hates to go out to eat because I bring a magazine for the bathroom, LOL)! You will probably find many with that story on here! And I am so glad that you have figured it out!!! And I hope that you get an understanding ear from your doctor about it. From what I have read on this board (because this wasn't my experience) some docs are not that quick to listen to you about "such a rare disease". Someone mentioned going to the dermatologist because if they confirm DH, then you have celiac, easy as that. That sounds good to me! I didn't have DH, but that would have been a much quicker route than the four or five tests that I went through before finding out about this board and the blood panel to ask for (and some people go through years of testing! Oh my!). And I am SO glad that you are a chef! You can be such a blessing to the gluten free world!! God Bless you!!!! Tiffany

[Guest mmc]

Thanks! I hope that once I completely figure all of it out, I can begin my new gluten-free life. I'm sure it's not going to be overnight, but I'm hoping to transform my most loved gourmet meals into gluten-free and create a bunch more. We'll see how it goes. I'm certainly happy that all the dots are finally connecting.

Gotta go to work now...blah. I want to stay in bed.

[JenAnderson]

I would also like to recommend Against the Grain and the Gluten Free Bible. They're great for learning how to deal with others and there are menu cards for several languages for world travelling. I got Against the Grain when I first learned I had celiac disease and it helped me alot. Jax Peters Lowell is the author and she has a really wonderful sense of humor in her writing.

[Guest mmc]

I need to vent!

So, I'm sitting at work today, chewing a piece of gum, and half a tooth breaks off. AHHHHHHHHHHHHH!

I'm so sick of this. I'm about to tear my hair out! How do you deal with this?

I did call the doc today, trying to make an appointment, but my doc is aboute impossible to get in to see. So we'll see.

[ms-sillyak-screwed]

I talked to my husband today, just about the possibility that this could be the problem, and although overall supportive, he kept saying "Well, honey, you're self diagnosing yourself. You really shouldn't do that."

Hubby doesn't get it... I feel for you. And you will get the same reaction from main stream doctors. They get money $$$$ from the insurance companies NOT to DX us. They only has 20 minutes of celiac disease in medical school. And years-ago they were told only europeans get it [not] Americans. Also remember there is NO magic pill yet (although there is one on the horizon) we DO NOT have no cure, but diet. And doc's don't make a penny if we go on the diet and get well. No more patients. Celiac is not so rare 1 out of 100 un-DX'ed. People don't want to talk about sitting on the queens-throne, the dash-to-the-john, or steatorrhea diarrhea that smells like I can't even say. See what I mean? I was on a local radio show on a Friday night telling the world I have steatorrhea diarrhea it was embarassing and no one knew who I was, or could see my face.

I have a 85-year-old daddyO that lives with me winters. He's the crumb man I call it. He sees me have these seizures, he picks me up off the bathroom floor and puts me into bed, he cleans up the mess when I loose control of my bowels and cares for me. But his crumbs make me crazy. I'm paranoid in a big way, I wake up in the morning and the kitchen is covered in crumbs. His eyes are not so go so I think he doesn't see what he's doing. I don't think the dishwashers gets all the food particles and I'm sure I'm being cross contaminated.

If you are touching wheat bread and cooking for your family and have DH that can pose a problem, I would imagine. I don't know much about the DH part of celiac disease... others know more about it then I do.

Are you going to see a GASTRO doc, or a SKIN doc?

I have a thought -- call the local labs and ask if they can do the blood work? If they can, call and ask to see if he can write the script for the blood work, go in and pick it up, go to the lab and have it done before you go in for your office visit. Follow me?

[Guest mmc]

My insurance requires that I have a referral from my family doc to see a dermatologist. So, Thursday I will see my family doc, get a referral to a dermatologist and have him order the blood tests.

My mother thinks that I have "Chronic Fatigue Syndrome," I mean really, I put CFS in the same category as IBS and all the other "catch alls" that the doctors have. I'm not going to worry about what my family doc says, as long as they order the tests and give me a referral. I feel too bad too much to get yanked around by someone who is ignorant to a possible answer. I've done it for 10 years and I don't want this disease to slowly kill me while my children watch. And if I can start my children on the right path to treating this disease (because if I have it, then they have a greater chance of having it) then that's what I'm going to do.

I've been poking around the board the last few days and if there is any connection between Celiac and being of Irish desent, then there's another piece of the puzzle. I'm absolutely terrified.

[mouse]

Please don't be terrified. It is a managable disease and the only one that can be controlled by a specific diet. If you have Celiac, be thankful that it was caught before you got a lot sicker. Good luck and know that we are all supporting you in finding the right answers.

[Guest mmc]

Well, my appointment at the doc is on Thursday. Today I feel horrible. I haven't had any energy all day. I was almost late for work because I couldn't get myself out of bed. I've got stomach cramps that are some of the worst I've felt thus far. My un-dx'd DH is flaring up and itching like crazy. Does anyone have any ideas of a way to treat some of this (ie a med for the itch, stomach cramps, fatigue)? I know that being gluten-free will help, but I can't go gluten-free until after the test on Thursday. So, I just need a temp fix for the symptoms.

Any ideas?

[Guest mmc]

Well, I went to to the doc Thursday, got the blood tests on Friday. The lab said it would be 3 to 5 days before the tests were back. Hopefully they run the right tests.

I went in, turned in my paperwork ect, and then they said "I'm sorry, it will just be a few minutes. We have to make some phone calls regarding your tests." Immediately I'm thinking "Oh great! Am I the only person on the planet who has ever requested this test?"

Well, come to find out, from listening in on the phone conversation, they had no idea what tests needed to be run for celiac. Then, to make it worse, when I tried to clue them in, the woman at the front desk said "Don't worry Melisa, we have tons of patients here that have that." Now, if they have "tons" of patients with celiac, then wouldn't they know what tests needed to be ran?

Then, the woman with the needle, was so concerned about leaving work early to see her boyfriend, (information she offered up while assulting me with the needle), stuck me 4 times, and now I have a huge bruise. Ouch!

So, in one day, I was patronized, blatently lied to, and assulted with a sharp metal object. It was the PERFECT day!

[ms-sillyak-screwed]

They only stuck you 4 times? The test has 5 components... hope they did it right.

Open Original Shared Link

If they have a lot of patients with celiac disease ask to speak with one or two of them, or give them your phone number and have them pass it on. You'll see no-one will call you. ...cause they [all] lie! its all about $$$

mmc -- I pray you are feeling better and you get some answers... Are you going gluten free now?

[Guest mmc]

They only stuck you 4 times? The test has 5 components... hope they did it right.

They stuck me 4 times, took 5 viles of blood. But they were also running a slew of other tests with it. Hopefully they did it right, but I plan on asking for a copy of the lab work when I return to the doc. And she referred me to a gastro. So, we'll see.

mmc -- I pray you are feeling better and you get some answers... Are you going gluten free now?

I planned on going gluten-free right after the blood work but my doc said that if they needed to run other tests after the blood work, being gluten-free would mess them up. So, I'm still getting glutened, which in turn means I'm just not eating very much, maybe once every two days.

I'm sure I'll feel better once I go gluten-free, but until then...I'm stuck being miserable.