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jamie101

Blood Test Results Questions?

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Oh, I'm sorry, I failed to answer you about the scarring ~~~ what you describe is typical. The purple places will eventually go away. Sometimes people get white spots. My purple fades & turns a tan color & then finally, after months & months, it returns to normal skin tone. Yes, it can itch even where there is no blatant rash ~~~ count your blessings when you only get the itching with no rash. Often it will itch BEFORE a rash appears ~~~ mine run anywhere from 12 to 24 hours prior but it doesn't ALWAYS itch before rash appears. 

Rash seems to fire up the itch intensity late afternoon on. I don't think I slept for close to 2 years. If you get to sleep, you won't stay asleep. I am 3 years STRICT gluten-free & still get rash but it's 400,000% better & I sleep at night. I rarely get a blister now; it's more like insect bites. I go hours & hours & sometimes even days without a single itch on my body.

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What you have just stated is consistent with dh. We tend to have fewer, milder GI symptoms. I had no vomiting, no real overt GI symptoms. I did have indigestion 24/7 there in the last year or two, bloating out the wazoo, belching like a sailor & the same nausea that you describe. Not all of us are the same & I now know mine had gone on for years & years & years. I did have other symptoms, among them, migraines, painful bones & joints. dizziness, brain fog, an "out there" feeling and more.

You can continue to have the rash & it will wax & wane even eating strict gluten-free until all the antibodies get out of your skin. DH is EXTREMELY sensitive to the tiniest gluten ingestion so one needs to be rabid about not getting glutened.

And I'm hearing your next question coming. :lol: A dh biopsy is the only way to "officially" dx dh but the same rules apply as with the blood tests & endoscopy --- you MUST be eating a full gluten diet for about 6 weeks to 2 months, the steroids will make it turn up false negative. If that weren't enough then the biopsy must be done correctly & there's the rub ~~~ try to get a derm who knows what they're doing for a dh biopsy ~~ good luck with that.

So, what it all boils down to is this:

You know you are much better off gluten than on so just don't eat it.

I've had severe 24/7 constant, gnawing indigestion and heartburn that is ridiculous.. Started happening badly after consumption of onions & so I figured I just couldn't tolerate that (years ago), but then it progressed to peppers (which I used to looove), hot sauce etc and right before my tentative diagnosis almost everything caused heartburn within an hour of consuming the food & I could taste the food as I burped (gross, I know) which absolutely disgusted me to NO END - this is the reason why I loathe hot dogs & then everything gave me that effect. Well, right after going gluten-free I have not experienced that anymore - yay!

It is especially weird that you say your DH rashes start to irritate you toward the afternoon hours as mine always, always, always flare up in the afternoons & especially night time.. Ugh. I wake up with welts on my legs, bleeding and all - lovely! I know!

At first my regular doctor brought up the idea of eczema (which I feel is almost immediately the assumption for DH as doctors don't know/don't want to diagnose this..) but I've never had eczema in my entire life & he said it was unlikely it could be then, as I would have surely had some outbreak in childhood, which has never been.

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The night time dh going nuts driving you out of your mind thing is a feature of the nasty beast for pretty much everyone. 

My sheets were a wreck for 2 years. Every morning they were grosser than gross. Disgusting, nasty & awful! 

 

Almost everyone with dh has been dx'd eczema, psoriasis, scabies, bed bugs. We hear it all the time. And the first thing they do is load the patient up with steroids. As to the steroids, it is medically documented that there is a rebound effect with the dh when you come off them. Believe me, it's sheer hell.

 

Go on over to the dh forum & just read & read & read. Most of us but not all find that limiting iodine intake helps. Maybe I should put that another way. Iodine makes it flare like pouring gas on a fire. You can try limiting your iodine for 2 weeks. See thyca.org for a low iodine diet (just leave off the gluten foods). Also, NSAID's can make dh act nasty. Tylenol seems to be the least offensive but for a long time I even had to be very careful with that. Now I can even take Advil as long as I watch it & don't overdo.

 

I am still sensitive to iodine in large amounts. Watch labels for carageenan (seaweed or algae) it's loaded with iodine. I recently had a flare that I just couldn't understand as I hadn't had anything like that for 6 or 8 months. I happened to pick up the "calcium enriched" Lactaid milk. IT has carageenan in it whereas the regular Lactaid does not. Every thing calmed down once I quit the calcium enriched version. We still don't have seafood back for the same reason -- mega iodine. But this too shall pass. I lived through hell; I can deal with these niggling little things.

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The night time dh going nuts driving you out of your mind thing is a feature of the nasty beast for pretty much everyone.

My sheets were a wreck for 2 years. Every morning they were grosser than gross. Disgusting, nasty & awful!

Almost everyone with dh has been dx'd eczema, psoriasis, scabies, bed bugs. We hear it all the time. And the first thing they do is load the patient up with steroids. As to the steroids, it is medically documented that there is a rebound effect with the dh when you come off them. Believe me, it's sheer hell.

Go on over to the dh forum & just read & read & read. Most of us but not all find that limiting iodine intake helps. Maybe I should put that another way. Iodine makes it flare like pouring gas on a fire. You can try limiting your iodine for 2 weeks. See thyca.org for a low iodine diet (just leave off the gluten foods). Also, NSAID's can make dh act nasty. Tylenol seems to be the least offensive but for a long time I even had to be very careful with that. Now I can even take Advil as long as I watch it & don't overdo.

I am still sensitive to iodine in large amounts. Watch labels for carageenan (seaweed or algae) it's loaded with iodine. I recently had a flare that I just couldn't understand as I hadn't had anything like that for 6 or 8 months. I happened to pick up the "calcium enriched" Lactaid milk. IT has carageenan in it whereas the regular Lactaid does not. Every thing calmed down once I quit the calcium enriched version. We still don't have seafood back for the same reason -- mega iodine. But this too shall pass. I lived through hell; I can deal with these niggling little things.

I read through the forum some (have to take in all this important info in small doses!) and am so elated at what you said about this "rebound effect" because it is so fitting to what I am currently going through! While it sucks (putting it lightly) I am glad that I at least have some kind of answer.

I have heard that DH is common in certain places, the neck being one, which surprises me because I don't have the rash there.. I actually first got this rash really terribly about a year ago and it started in the inside bend of my elbow as a tiny (what I thought was a) pimple. By the next morning it was covering both arms. This time, however, it began on my legs and has continued to spread. It is so horrific in the back bend of my knees..if my legs aren't straight out they itch and burn like sheer, pure hell. Unfortunately, while the steroids helped for a moment, about two days after I completed them it was back with a vengeance..It has now spread to my inner wrists, and tops of my hands. This is more emotionally disturbing because as I can cover my legs I can't do that with my hands and I work with people in retail, so the last thing I want is a blemish of any sort lurking on my body!

Here's to hoping my allergist agrees!

Why is it that DH sufferers show negative blood results? Did yours?

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I didn't have a blood test prior to quitting gluten. I was so far gone with all my symptoms including the rash that the moment I figured out what it was I quit gluten right then & there. There was no way I was going to eat it one moment longer just so some doc could put me through the wringer misdiagnosing it time & again. I could not even wait for an appointment. I had done my research & knew all the pitfalls of trying to get an official dx and knew the longer I ate gluten, the longer I would be putting those antibodies under my skin and the longer I would suffer. DH can & does present anywhere on your body -- anywhere! Name a body part -- I've had it there. 

By the time I figured out what my problem was the gluten was affecting me in so many ways not the least of which was the worst pain imaginable that would attack different body parts at different times often multiple parts at once. There were times I could not use my hands at all. Just the touch of a kleenex against my hand would send me into such pain I can not describe it. Times my hips were so bad off I could not stand up or sit down. I really can't describe the pain & nothing, absolutely nothing helped it. No OTC pain meds, not percocet, nothing. Heat did nothing, ice only helped b/c I would leave it on until that body part was just plain numb. Dangerous doing that as it will damage tissue but it was the only way. And the rash.... it was everywhere, everywhere. I had the blisters & they were all over me. My scalp, ears, belly button, legs, hands, arms, torso front & back, neck, legs, feet..... The itching, burning, stinging. The blood. The skin sloughing off my body. The pain of the lesions.

 

The reason given for it showing neg. blood is that the antibodies are concentrated under your skin. 

 

I know there's a ton of info. to process, learn & remember. Most important right now is to make sure you don't get glutened. Make sure to read the Newbie 101 & clean up your kitchen, get new colander, cutting board, etc., etc., etc.

 

I'm sorry about your hands & understand about work but there's nothing to be done about it. Is there any way you could wear cotton gloves & tell people you had an allergic reaction to something?

 

There is a drug --- Dapsone, but I urge you to research it carefully before you decide to try it. And it's in the sulfa class --- if you're allergic to sulfa drugs you are out of luck. 

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I read through the forum some (have to take in all this important info in small doses!) and am so elated at what you said about this "rebound effect" because it is so fitting to what I am currently going through! While it sucks (putting it lightly) I am glad that I at least have some kind of answer.

I have heard that DH is common in certain places, the neck being one, which surprises me because I don't have the rash there.. I actually first got this rash really terribly about a year ago and it started in the inside bend of my elbow as a tiny (what I thought was a) pimple. By the next morning it was covering both arms. This time, however, it began on my legs and has continued to spread. It is so horrific in the back bend of my knees..if my legs aren't straight out they itch and burn like sheer, pure hell. Unfortunately, while the steroids helped for a moment, about two days after I completed them it was back with a vengeance..It has now spread to my inner wrists, and tops of my hands. This is more emotionally disturbing because as I can cover my legs I can't do that with my hands and I work with people in retail, so the last thing I want is a blemish of any sort lurking on my body!

Here's to hoping my allergist agrees!

Why is it that DH sufferers show negative blood results? Did yours?

That was the way DH presented with me. Arms and legs in the crooks is awful. As a child they thought I had poison ivy. It wasn't until adulthood that the lesions moved to my scalp, back of neck and unfortunately my face. Glad you found out that it was DH before it got that far. I was lucky and started to get relief from new outbreaks within a month or so of starting the diet. I didn't have to avoid iodized foods like seafood but did drop it from the salt I used. It did take awhile for the antibodies to leave my skin. But eventually they did and my outbreaks became much less severe and the last of my symptom cascade instead of the first.

Check your topicals for gluten ingredients, if you haven't already.

Do make sure if you decide to try Dapsone that you do as PP advised. Also make sure your doctor does a liver panel on you before prescribing it and frequently while you are on it. We often have wonky liver panels on diagnosis that resolve with time. However Dapsone can be toxic to the liver so if your liver panels are not normal, IMHO, you don't want to take it. 

 I hope you heal quickly. 

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I will add to what ravenwoodglass said about the liver panels. Mine were wonky prior but not enough to cause alarm to the doctor however, once I was gluten free for about 6 months my liver panels returned to absolutely normal. 

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That was the way DH presented with me. Arms and legs in the crooks is awful. As a child they thought I had poison ivy. It wasn't until adulthood that the lesions moved to my scalp, back of neck and unfortunately my face. Glad you found out that it was DH before it got that far. I was lucky and started to get relief from new outbreaks within a month or so of starting the diet. I didn't have to avoid iodized foods like seafood but did drop it from the salt I used. It did take awhile for the antibodies to leave my skin. But eventually they did and my outbreaks became much less severe and the last of my symptom cascade instead of the first.

Check your topicals for gluten ingredients, if you haven't already.

Do make sure if you decide to try Dapsone that you do as PP advised. Also make sure your doctor does a liver panel on you before prescribing it and frequently while you are on it. We often have wonky liver panels on diagnosis that resolve with time. However Dapsone can be toxic to the liver so if your liver panels are not normal, IMHO, you don't want to take it.

I hope you heal quickly.

Thanks everyone for all your beneficial feedback! It's all so appreciated!

It is awful (to put it lightly!) - it feels like sheer hell each night, though it has reduced some after going gluten-free a few weeks ago. I was thinking about making an appointment to see my dermatologist to see what she might have to say incase her two cents might help me some. If she does decide to perform a biopsy of a lesion, do I need to be consuming gluten at the time for that as well? If so, that's a definite no-go also, because I'm not going to subject myself to hell again just for a doctor's stamp of approval!

Thanks for the tip about looking into my topical products. As an avid makeup lover I see it would definitely be necessary to check into all of my beauty products prior to using them again. Are there any makeup brands (preferably well-known/prestigious) that you would recommend? How about lotion? Does THAT contain gluten?

& on the subject of Dapsone I am going to avoid that all together if I can..I've read those side effects & would rather suffer with itching. I understand it provides relief but to each his (her) own!

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I will jump in on the makeup conversation. I use Cerave lotions and sunscreens on my face (Banana Boat suncreens on my body). I also love coconut oil as others have mentioned in other posts. Physicians Formula products (foundation and cover ups) are gluten free. Mineral foundation formulations are typically gluten free. I make sure my shampoo is also gluten-free too.

You can search within the forum for other gluten-free makeup and skincare products.

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I posted on page 2 that yes, you would have to be eating gluten for 6 weeks to 2 months for a dh biopsy AND if you had not been off the steroids for 2 months prior that would throw a false negative. 

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I have recently had another question pop up in my head & so here I am (yet) again!  :P

 

I have heard that people who are celiac are often intolerant to milk and soy products & I was wondering if this would show up on blood test results? My milk & soy levels were both 'normal' (I don't know the exact numerical range as none was shown, but I could ask my doctor) but I feel that I am sometimes experiencing issues with milk and/or soy but I'm not sure which one it is? I notice some slight symptoms (cramps/burning feeling (heartburn/indigestion), sometimes a slightly elevated heart rate) but they do subside & faster than my 'gluten-induced' symptoms. It's not even all dairy or soy products..for example, coffee in small quantities (in coffee/drizzled over oatmeal) does not bother me. Neither does eating yogurt, in fact, yogurt actually makes me feel BETTER, weird, huh? But drinking a glass would cause me slight issues, and last night I had some cheese and woke up with a few slight symptoms, though I had gluten-free pizza the other day and had zero symptoms - I couldn't believe how great I felt, imagine that!!

 

Just trying to inquire here about some potential additional issues. Thanks!  :)

 

P.S. Might I add...Is PopSecret popcorn gluten free?!

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I don't know what you mean by milk & soy showing up on blood test results. I have never heard of any blood tests for milk & soy & "normal" numbers on those. 

 

Celiacs have trouble with dairy b/c the tips of the villi are where the lactose in the dairy is broken down & dealt with but that's the first part of the villi affected & degraded by celiac disease. When the villi are blunted, one can't deal with dairy. I'm not sure what the mechanism is that makes soy a problem for us but it's pretty common to have problems with soy. After going gluten-free & the gut has healed over time, most (but not all) get dairy & soy back. I don't eat much soy though since having been off it for a long time. Soy is really not good for us anyway but it is pretty hard to eliminate completely as it too seems to be in almost everything. 

The reason you don't have a problem with yogurt is because of the probiotics in yogurt. They actually do help.

 

As to the Pop Secret ----

 

"Q: I am concerned about food allergies. How can I find out what is contained in Pop Secret?

A: The ingredient listings on all our packages are complete and accurate. The package should be read carefully if there is any question of possible allergic reaction. For dairy/milk, our products have the universal “D” symbol on the package to indicate the product contains dairy ingredients. For gluten/soy, all popcorn is free of glutens from wheat, rye, oats and barley. However, all of our products do contain corn gluten (modified corn starch). Our microwave flavor providers have also assured us that our flavorings are gluten-free as well. For peanuts/tree nuts, Pop Secret popcorn is produced and packaged at a facility that is free from tree nuts and peanuts."
From:

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