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Diagnosed With Dh Without Biopsy


LoriC

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LoriC Apprentice

My dermatologist is treating me for DH, i'm on dapsone 100mg a day now..he never did a skin biopsy, he said he wants to clear the rash up first with the med and gluten free diet..I told my family dr. and he set me up with a gastro spec. in Oct. I've had gastro problems for about 16yrs, been told its IBS, but now i'm worried i have had celiacs all these years ;( I've had scopes done and upper lower GI's but i never heard of celiacs before, so i'm not sure they ever tested me for it. I don't no of anyone in my family that has/had celiacs either.


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Fiddle-Faddle Community Regular

Sounds like your dermatologist is the only doctor you have seen who has any sense at all.

Most of us on this board are of the opinion that IBS doesn't actually exist as a disease. The S stands for "Syndrome," which means a collection of symptoms. Those symptoms are IDENTICAL to the symptoms of celiac. Unfortunately, most doctors seem to be idiots, and they don't bother testing for celiac because they have either never heard of it or they are sadly misinformed about it (like, they think you have to be wasting away to nothing to have it, or that it's a children's disease, or that it's extremely rare, etc.).

Anyway, welcome to the board! I hope your rash and tummy troubles disappear quickly.

sickchick Community Regular

Congratulations on the diagnosis! Unfortunnately you already had to endure a scope :huh:

happy healing!

  • 2 weeks later...
Queener Newbie

You indicate that they have set you up with a gastro appt in October. If you are gluten free now, any test results will not test positive for Celiac (not sure about DH). Surprised your dermatologist didn't do a punch biopsy of your rash - this must be done when you have the rash - they test skin right next to the rash (ouch by the way!!). :huh:

LoriC Apprentice
You indicate that they have set you up with a gastro appt in October. If you are gluten free now, any test results will not test positive for Celiac (not sure about DH). Surprised your dermatologist didn't do a punch biopsy of your rash - this must be done when you have the rash - they test skin right next to the rash (ouch by the way!!). :huh:

He did do a scraping at my first appt. but i was told thats not a biopsy. I'm just going to see what this dr has to say, he won't do any tests unless i say so lol. I might go for the scope to see how much damage was done to my intestine, i've been diagnosed with IBS for 16 yrs, so i'm worried how much damage was done in all that time. I don't understand why my dermatologist didn't do the biopsy, i really wish he would have. But i do believe i have DH, with the dapsone and the gluten-free diet, my rash is almost gone, which is the first time in a year, a dr. was able to control it or get rid of it completely.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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