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New And Confused - Help Please? (sorry Long)

spfldwcschick

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spfldwcschick Newbie
spfldwcschick
Posted

OK, here is a little bit of my history.

About 2 - 2 1/2 years ago I started having horrible gastrointestinal problems. Horrible bloating, distention, abdominal cramping frequently after eating. Went to a GI and he did every test in the book. Tested me for Celiac a year ago (blood test and biopsied during endoscopy taking one sample) and said I was negative (I just called yesterday and my numbers a year ago were IGA 4.1 and IGG 12.7 they told me anything under 20 was negative). He finally diagnosed me with IBS and sent me on my merry way.

Also I have been going to a dermatologist for skin lesions that I kept getting on my scalp (mainly), upper part of my neck, some on my arms and legs (the legs are always hard to tell how many were mosquito bites and how many were lesions). Most were on my scalp and were itchy and would ooze clear fluid and take forever to heal. Once they finally healed there is usually no scarring. I was still working with the derm to find a antibiotic to take that didn't make me nauseous.

In the meantime, I started working with more of a naturopathic doctor who did an ASI Adrenal Stress Index test (saliva based) which included a test for gliadin intolerance. The results came back at a 21 U/ml, with a borderline positive result at 13-15 and anything over 15 being a positive result.

Upon hearing the results, I started a gluten free diet 1 week ago. Within 3 days, all of my gut symptoms are gone. Absolutely no bloating, no cramping, nothing. ALSO, all of my skin lesions immediately started healing as well.

So, I'm wondering if I really could have celiac and my skin condition could be DH. I believe I had read that if you have DH that your blood tests may come back negative but you could still have celiac?

From here I would like to figure out if I really have celiac or just a gluten intolerance. I'm reading that you should get a diagnosis first before removing wheat out of your diet, although I'm not anxious to add it back in since I've been feeling so much better. ;-) So, since it's only been a week, could I still get tested assuming that everything isn't out of my system yet? And how long do I have to get tested before everything is out of my system?

Also, can someone explain a little more how they test for DH? Could it show up positive since I've taken gluten out of my diet? Also since the lesions are healing and aren't oozy anymore, would a test still come up positive? And how is the test done - on the lesions or on healthy skin? Do you have to have a current outbreak for the test to come up positive?

I'm just trying to get some answers before I get too far down the gluten free path (without a diagnosis). Any help or advice is appreciated!!!

Thanks!

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nasalady Contributor
nasalady
Posted
OK, here is a little bit of my history.

About 2 - 2 1/2 years ago I started having horrible gastrointestinal problems. Horrible bloating, distention, abdominal cramping frequently after eating. Went to a GI and he did every test in the book. Tested me for Celiac a year ago (blood test and biopsied during endoscopy taking one sample) and said I was negative (I just called yesterday and my numbers a year ago were IGA 4.1 and IGG 12.7 they told me anything under 20 was negative). He finally diagnosed me with IBS and sent me on my merry way.

Also I have been going to a dermatologist for skin lesions that I kept getting on my scalp (mainly), upper part of my neck, some on my arms and legs (the legs are always hard to tell how many were mosquito bites and how many were lesions). Most were on my scalp and were itchy and would ooze clear fluid and take forever to heal. Once they finally healed there is usually no scarring. I was still working with the derm to find a antibiotic to take that didn't make me nauseous.

In the meantime, I started working with more of a naturopathic doctor who did an ASI Adrenal Stress Index test (saliva based) which included a test for gliadin intolerance. The results came back at a 21 U/ml, with a borderline positive result at 13-15 and anything over 15 being a positive result.

Upon hearing the results, I started a gluten free diet 1 week ago. Within 3 days, all of my gut symptoms are gone. Absolutely no bloating, no cramping, nothing. ALSO, all of my skin lesions immediately started healing as well.

So, I'm wondering if I really could have celiac and my skin condition could be DH. I believe I had read that if you have DH that your blood tests may come back negative but you could still have celiac?

From here I would like to figure out if I really have celiac or just a gluten intolerance. I'm reading that you should get a diagnosis first before removing wheat out of your diet, although I'm not anxious to add it back in since I've been feeling so much better. ;-) So, since it's only been a week, could I still get tested assuming that everything isn't out of my system yet? And how long do I have to get tested before everything is out of my system?

Also, can someone explain a little more how they test for DH? Could it show up positive since I've taken gluten out of my diet? Also since the lesions are healing and aren't oozy anymore, would a test still come up positive? And how is the test done - on the lesions or on healthy skin? Do you have to have a current outbreak for the test to come up positive?

I'm just trying to get some answers before I get too far down the gluten free path (without a diagnosis). Any help or advice is appreciated!!!

Thanks!

Hi and welcome!

Your gastro symptoms sound like celiac, first of all. Which is why you went to a GI of course! And just the fact that the gluten free diet has such a positive effect on you tells you something very important! Like "don't eat gluten"! :)

As for testing you for DH, if you still have some blisters, you can have a dermatologist biopsy the clear skin next to the lesions, not the lesions themselves. It won't matter if you're currently eating gluten or not as to the skin test, only whether or not you have active blisters.

You can test yourself for DH by wearing a bandaid for several hours which has been soaked in over-the-counter iodine solution. It should produce a patch of DH shaped like the bandaid! Technically you're supposed to use 30% iodine solution and just apply a small amount, but I don't know how easy it is to come by 30% iodine solution. This is the old test for DH.

If you do have DH, that means you automatically have celiac disease. But you said that there was no scarring when the lesions heal? Do they turn purple as they heal? Classically, DH blisters turn dark purple and the purple spots take weeks (or months) to go away.

If you wish to be tested again for celiac disease, you should eat at least 4 slices of wheat-based bread (or the gluten equivalent in pasta, cereal, whatever) for several weeks (probably 2 - 3 months) before being tested.

Even if all tests are negative, if you feel better gluten free then go for it! This board can help explain the process of going gluten free, give you tons of great recipes, and provide lots of encouragement!

Good luck with everything!

JoAnn

spfldwcschick Newbie
spfldwcschick
Posted
  • Author

JoAnn,

Thanks so much for your insight!!! Yes, I think it sounds like celiac as well (which is why I had my GI test me for it), but he had concluded that it was negative and told me to eat less carbs and off I went eating gluten.

So, one year later, I still have the same GI symptoms, the skin lesions and finally get the saliva test done which shows a mild intolerance.

As for the scarring, the ones on my scalp I can't tell as easily how they heal since my hair hides them, however, the ones on my legs always take forever to heal, turn a dark purple and take months to go away. I usually thought they were mosquito bites on my legs, or it would seem that I would get a bite, and it would trigger a reaction where there felt like there was a rash underneath my skin that itched like crazy. Eventually, I would scratch it enough that it would form a scab that would then turn dark purple and take forever to go away - i.e. the ones from last summer are gone, the ones from this summer are still fresh.

I don't know that I have "active" blisters, but I have a bunch of the dark purple scars and some red areas with scabs on them (gross I know). Would that be enough that they could biopsy next to them? I'm not real excited about starting to eat wheat again, especially for a few months when I've just started to feel better. On the other hand, if I just have a mild intolerance and don't have to be 100% strictly gluten free the rest of my life, that would be nice to know too!

Thanks again for any advice or assistance!

Kim

nasalady Contributor
nasalady
Posted
JoAnn,

Thanks so much for your insight!!! Yes, I think it sounds like celiac as well (which is why I had my GI test me for it), but he had concluded that it was negative and told me to eat less carbs and off I went eating gluten.

So, one year later, I still have the same GI symptoms, the skin lesions and finally get the saliva test done which shows a mild intolerance.

As for the scarring, the ones on my scalp I can't tell as easily how they heal since my hair hides them, however, the ones on my legs always take forever to heal, turn a dark purple and take months to go away. I usually thought they were mosquito bites on my legs, or it would seem that I would get a bite, and it would trigger a reaction where there felt like there was a rash underneath my skin that itched like crazy. Eventually, I would scratch it enough that it would form a scab that would then turn dark purple and take forever to go away - i.e. the ones from last summer are gone, the ones from this summer are still fresh.

I don't know that I have "active" blisters, but I have a bunch of the dark purple scars and some red areas with scabs on them (gross I know). Would that be enough that they could biopsy next to them? I'm not real excited about starting to eat wheat again, especially for a few months when I've just started to feel better. On the other hand, if I just have a mild intolerance and don't have to be 100% strictly gluten free the rest of my life, that would be nice to know too!

Thanks again for any advice or assistance!

Kim

Hi Kim,

If the healing spots on your legs turn purple and take a long time to go away it definitely sounds like DH! I don't know if a dermatologist can still biopsy you but it's definitely worth a try.

I hope you get your answers!

JoAnn

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