Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Okay Now Im Really Confused...just When I Thought I Couldn't Get Any More Confused!


jodikris

Recommended Posts

jodikris Apprentice

I just got a fax from my dermatologist at my request to SEE my biopsy results...ONE test came back positive ONE came back negative for DH....is this possible>!>!>!>!>!

So they are acting like I am crazy to be concerned about this...lets examine this...I am having to change my ENTIRE LIFE for a disease no one can tell me for sure that I have!! WTF!!!!!!!

ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Someone tell me its not me!

I have a terrible rash on my: knees, elbows, back, waist and hair/chin line

I react to Dapsome

I have stomach problems

my you know what sticks to the bowl....

SO do I have DH or do I not have it? Do I have celiac disease or do I not have it?!


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

What does your gut tell you? Run the tests over, have the endo. with biopsy, or try the diet.

Sounds like you have the same kind of luck I do.

Laura

  • 1 month later...
Dlapham celiac & DH Newbie
I just got a fax from my dermatologist at my request to SEE my biopsy results...ONE test came back positive ONE came back negative for DH....is this possible>!>!>!>!>!

So they are acting like I am crazy to be concerned about this...lets examine this...I am having to change my ENTIRE LIFE for a disease no one can tell me for sure that I have!! WTF!!!!!!!

ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Someone tell me its not me!

I have a terrible rash on my: knees, elbows, back, waist and hair/chin line

I react to Dapsome

I have stomach problems

my you know what sticks to the bowl....

SO do I have DH or do I not have it? Do I have celiac disease or do I not have it?!

Your symptoms are correct for c/d--d/h. If you have d/h you DO have c/d. The d/h coverage area for me was generally the same as you outlined. It is hard to hear and accept that one has a disease like c/d and d/h. I was big time angry. But after the gluten-free diet and the improvement it made in my over all health, I am now seeing it as a blessing, and thank God for helping me to find out what has caused me so many problems over the last 58 years. I can now actually start thinking that I may actually make it to my 80s.

Some times the tests are not conclusive. I had some positive and one skin biopsy that was none conclusive. ( that was in the middle 80's) But my symptoms worsened until October 2005 when I finally went gluten-free again and this time with better information. Now everything is better. Go with what your gut tells you, and thank God for helping you to find the problem.

Ursa Major Collaborator

I guess that one skin area just was wrong for a biopsy. But if one definitely is positive, then you obviously have it. They take biopsies from more than one area to examine, just to make sure. If both were negative, you could question if you actually have DH (and even then it could be a false negative). But if one is positive, that's enough for a diagnosis.

So, I say you'd better go on the gluten free diet, and see what will happen! If you feel much better, and your stomach and bowel symptoms improve, you have your answer. The rash can take up to two years to completely clear up, unfortunately. But my skin improved dramatically within a short time on the gluten-free diet. Its not perfect, but at least my skin looks so much better, especially on my face!

And doctors are often so ignorant, what do they know. You have your answer. Act on it and ignore them.

frenchiemama Collaborator

I don't know much about the lab work, but given your symptoms and the fact that you had one positive I would say that you probably have it.

colorado kathy Newbie

I had one biopsy that was "inconclusive" and another one about 6 months later that was positive. At that time I was told the gluten-free diet would take 7 years before it would work and even then, it was questionable if it would help at all. I felt like you did - I thought I couldn't change my lifestyle for the rest of my life and I was pretty angry. So I didn't do anything for 5 years. I've now had positive bloodwork and I went gluten-free 8 weeks ago. I am amazed at how quickly I saw results. By the end of the first week, the intensity of the itching had decreased and Hallelujah! I began to sleep better (this is after 6 years of terrible sleep). Here I am 8 weeks later and my skin is so much clearer (not completely gone, but an enormous change), I don't have the itching, my GI system is in much better shape and my mood has improved dramatically. It takes a lot of reading to figure out how to do this lifestyle change correctly and I'm probably still making mistakes unintentionally, but that is why I read this site as much as I can - it is so helpful. Good luck to you! It is so worth it!

jerseyangel Proficient

Wow--7 years? Really?


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



Celiac.com Sponsor (A8-M):



colorado kathy Newbie
Wow--7 years? Really?

Yes, that's what I was told. More misinformation! I'm glad it wasn't true.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,192
    • Most Online (within 30 mins)
      7,748

    MariaV
    Newest Member
    MariaV
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...