Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Negative For Celiac, But Positive For Dh? Possible?

lil'chefy

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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/

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,689
    • Most Online (within 30 mins)
      7,748
    EndlessSummer
    Newest Member
    EndlessSummer
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.