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Negative For Celiac, But Positive For Dh? Possible?

lil'chefy

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lil'chefy Apprentice
lil'chefy
Posted

Anyone else come up with a negative result from endoscopy and from blood test, but test positive for DH? How is this possible?

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lil'chefy Apprentice
lil'chefy
Posted
  • Author

Anyone else come up with a negative result from endoscopy and from blood test, but test positive for DH? How is this possible?

I just read so many posts concerning this topic. I love this site. Nevermind my question. I found my answers!

beachbirdie Contributor
beachbirdie
Posted

I just read so many posts concerning this topic. I love this site. Nevermind my question. I found my answers!

LOL! Glad you got your answer! This really IS a great forum. :D

squirmingitch Veteran
squirmingitch
Posted

Yup; it really is a great forum. So now you know don't you that if you have dh then you ARE a celiac.

lil'chefy Apprentice
lil'chefy
Posted
  • Author

Yup; it really is a great forum. So now you know don't you that if you have dh then you ARE a celiac.

I do realize that. I guess I have just been confused by the fact that Dr.s don't. I told a GI Doc that I had DH, he did endoscopy and concluded that I did not have celiac disease. He acted like I was crazy, which is crazy, because you would think that a GI Dr. would no about the relationship between DH and celiac disease. What is most confusing to me is that I definitely have some of the stomach issues, but it doesn't show in endoscopy. I have lately been having hypothyroid symptoms, crazy joint pain. I have the markers for lupus, but test shows I dont have it. I am frustrated that being gluten free since November hasnt made me feel better. Happily I am not on Dapsone anymore (21 years.

GottaSki Mentor
GottaSki
Posted

I do realize that. I guess I have just been confused by the fact that Dr.s don't. I told a GI Doc that I had DH, he did endoscopy and concluded that I did not have celiac disease. He acted like I was crazy, which is crazy, because you would think that a GI Dr. would no about the relationship between DH and celiac disease. What is most confusing to me is that I definitely have some of the stomach issues, but it doesn't show in endoscopy. I have lately been having hypothyroid symptoms, crazy joint pain. I have the markers for lupus, but test shows I dont have it. I am frustrated that being gluten free since November hasnt made me feel better. Happily I am not on Dapsone anymore (21 years.

My first thought was not that you are crazy, but that a GI doc that is not familiar with Celiac's connection to DH may not be the best one to take the biopsies of your small intestine in the first place. It is amazing - sad, but true - that all gastroenterologists are not well versed in Celiac Disease - we had a pediatric GI tell me that my son could not have a problem with gluten because he was tall and overweight -- someday all doctors will be informed that Celiac Disease comes in all shapes and sizes with a wide variety of symptoms.

When you say gluten-free hasn't made you feel better -- have you had improvement to certain symptoms. For me, my digestive symptoms improved and my gums became healthier, but fatigue and joint/muscle pain and a few other sypmtoms continued to get worse over the first 9 months gluten free. Have you tried removing dairy or nightshades (tomato, potato, peppers, eggplant)? It can be difficult to process these along with some other food groups when healing. I mention the nightshades because those can contribute to joint pain and some other symptoms.

squirmingitch Veteran
squirmingitch
Posted

Good Lord! You were on Dapsone for 21 years!!!!?????!!!!!???? blink.gifohmy.gif

When you have dh the gut damage tends to be patchier b/c the damage occurs more in our skin. So we tend to more often test neg. not only on the blood panel but also on the endoscopy. Only a really super good GI would be likely to find our damage b/c he would have to hunt & hunt & take lots & lots & lots of biopsies. I read recently something saying if you opened our intestines up & spread them out flat they would cover (wish I could remember exactly how they termed it) something jaw dropping like a football field. Just an astounding amount of territory.

I am finding my gut to be more sensitive now gluten-free than pre-gluten-free which gives me a good idea of the actual damage down in there. I've found Bok Choy, sweet red bell peppers, & bamboo shoots give me fits GI speaking. I used to eat them with no problem. Now I realize I need my veggies cooked well & not crunchy with the exception of snow peas & celery. ?????

This is a lot of reading but you might find a lot of interesting info. contained in this:

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/

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lil'chefy Apprentice
lil'chefy
Posted
  • Author

Good Lord! You were on Dapsone for 21 years!!!!?????!!!!!???? blink.gifohmy.gif

When you have dh the gut damage tends to be patchier b/c the damage occurs more in our skin. So we tend to more often test neg. not only on the blood panel but also on the endoscopy. Only a really super good GI would be likely to find our damage b/c he would have to hunt & hunt & take lots & lots & lots of biopsies. I read recently something saying if you opened our intestines up & spread them out flat they would cover (wish I could remember exactly how they termed it) something jaw dropping like a football field. Just an astounding amount of territory.

I am finding my gut to be more sensitive now gluten-free than pre-gluten-free which gives me a good idea of the actual damage down in there. I've found Bok Choy, sweet red bell peppers, & bamboo shoots give me fits GI speaking. I used to eat them with no problem. Now I realize I need my veggies cooked well & not crunchy with the exception of snow peas & celery. ?????

This is a lot of reading but you might find a lot of interesting info. contained in this:

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/

When I was first diagnosed with DH I was 13. I am now 36. I don't think they knew a lot about gluten free back then. They mentioned it to my Mom at the time, but they said it was impossible and impossible to even try it. I can only imagine the damage I have done to my body.

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