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

Upset And In Need Of Advice/help!

kaique

Recommended Posts

kaique Newbie
kaique
Posted

Hi all,

I'm a recent newcomer to this forum. I posted the other day because I have an itchy, horrible rash all over my body and I wondered if maybe it was Dermatitis Herpetiformis, because I have a young daughter with Celiac Disease, confirmed by biopsy last year.) I also have night sweats, tingling in my left arm, anxiety, difficulty sleeping, and intermittent abdominal pain, and mild hypothyroidism. Anyway, here is my situation: I finally went and got a screen last week, and got the results today at my doctor's office. She said I wasn't a "true celiac", but that I had some antibodies. I said, wouldn't it be a good idea for me to have a biopsy done to confirm whether or not I actually have the disease? Since, after all, I have a first degree relative with the disease and generally do not feel well??? She looked at me as though I had two heads, and agreed to refer me to a GI, but I could tell she thought I was overreacting. AM I? I didn't think I was, since the tests did show that I have some antibodies. The worst part is that I probably won't get into the GI for about 6 months (unfortunately that is usually the case for referrals here in Canada - everything takes forever).

Anyway, I was just wondering what exactly it means to have "some antibodies" on the screen. Are the screens sometimes not definitive? I am so confused and frustrated. Any help would be appreciated.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Most people will have SOME antibodies; each lab has a reference range for normal. For some the normal range is 5< , with borderline between 5 and 10, and everything over 10 positive, for example. So a result of 3 would be negative, a result of 9 would be high borderline, and a result of 32 a definite positive.

Rather than going to a GI, it might be more productive to go to a dermatologist and get the rash biopsied. They take a small sample of skin immediately adjacent to a a rash lesion, not of the rash itself, because the antibodies are found in the adjacent tissue. A positive biopsy for dermatitis herpetiformis is a diagnosis of celiac disease.

The disease expresses itself in different ways in different people. For some it is the intestinal tract, for others the skin, for some migraines, for some they have only neural symptoms. And the level of antibodies varies widely also. Many believe that "borderline" cases will become full-blown celiac eventually. So yes, it is all very confusing, and getting an actual celiac diagnosis is not easy, especially in Canada it seems, where specialist waiting times seem excruciating.

Your symptoms do sound suggestive of a celiac problem, especially if your daughter has it - does your rash blister and leave purple scars? Does it look like any of the rashes you have found in on-line links?

Skylark Collaborator
Skylark
Posted

You are NOT overreacting if you're covered with a rash and feeling sick. That's one heck of a rude doctor.

You'll have to call the doctor's office and ask for the antibody test results. Be sure to get the test name, your result, and the normal range for the test. You can post them here and we can help. Some of the blood tests are more definitive than others so it just depends on what she did. Many doctors will not diagnose celiac without a biopsy no matter what the antibody results. As mushroom says, you can get the DH rash biopsied for a diagnosis.

kaique Newbie
kaique
Posted
  • Author

Thank you both very, very much for your replies. Yes, my rash blisters, crusts, and leaves purple scars. I should have mentioned that - it's what prompted me to get the tests done in the first place - I had been putting them off since my daughter was diagnosed but when I did a bit of research it seemed to match the DH descriptions. I'll definitely try to obtain the results of the tests. Thanks again, I appreciate your help!

lucia Enthusiast
lucia
Posted

Kaique,

Your instincts are completely right about this. The American medical profession doesn't understand celiac very well, and that leads to irresponsible behavior from doctors. According to the Celiac Center at Columbia University Medical School, it takes an average of 9 years in the U.S. for a celiac diagnosis from the time symptoms appear. It's interesting to note that this information is included in the "For Doctors" tab of their website (Open Original Shared Link).

Keep preserving and looking for a medical professional who will take your health seriously. You're doing the right thing for yourself! And we will be here for you to answer questions and offer our support

Best,

Lucia

P.S.: The Celiac Center website has more information that you may find useful. I suggest looking around a bit there.

kaique Newbie
kaique
Posted
  • Author

Thanks so much Lucia! It's really encouraging to have all this support. I'm glad I found this board.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    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
      Food Allergies

      By Ginger38 · Posted

      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
      Bread choice for a newbie

      By Kris2093u4 · Posted

      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
      7yo struggling!

      By JForman · Posted

      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
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      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
      Blood results

      By trents · Posted

      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...