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

Yay, Inconclusive Test Results..


Mum in Norway

Recommended Posts

Mum in Norway Contributor

*sigh*

 

So my bloodwork showed everything normal exept slightly positiv DGP IgG.

My biopsi was kind of negativ. I do have some inflamation in my small intestine, 'similar to that of celiac', but not enough for it to actually be celiac, it seems.

I have just about the whole list of symptoms for celiac, including perifiral neuropathy, and when I eat gluten I will throw up within 15 min. That was offcours making the gluten challange quite trying, but I feel confident some gluten made it all the way down to my intestine every day.

 

Obviously I can not have gluten, for whatever reason, and the european 'glutenfree' foods hold alot of wheatstartch, of about 20 ppm of gluten, this is enough to give me some symptoms. So I only eat naturally glutenfree foods and tht works well for me, but I just can not understand how docs can say I don't have celiac, when none of my tests are negativ and with the symptoms and high sensitivity that I have?

Also, at the same time, I'm thinking that as I am more sensitive than most, my tests should be 'more' positive if all this was caused by celiac? I have had some of the symptoms ever since childhood, so this is not a new thing ,but I have eaten very little gluten the last few years.

 

Is it posible that I have had non celiac gluten intolerance for many years, that is just recently starting to develope into celiac? Or are the two not conected?

 

Some of the reactions I have seem sort of like allergic reactions, like itches, puffy face and stuffy nose, so I am now beeing sendt to a allegy specialist to see if I might be allergic to wheat, but I don't feel like that fits all thet well.

 

Does anyone have any thoughts or information aboute cases like this?


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



Celiac.com Sponsor (A8-M):



Mellon7373 Newbie

Hey, i'm afraid I don't have enough knowledge of this to answer your questions. I would like to ask you a question about your biopsy though. I've been told that they put a tube down your throat and thats what really scares me, is it as bad as it sounds? I think I have a gluten intolerance but am really scared of blood tests and needles, etc. Would you say its worth the blood test and biopsy to find out for sure? Ive been told it only shows up if you actually have celiac so i'm already cutting out gluten and wheat to see if i can self diagnose. I dont want to go through all the hassle of blood tests, etc for the doctors to say that they dont really know.

kareng Grand Master

*sigh*

 

So my bloodwork showed everything normal exept slightly positiv DGP IgG.

My biopsi was kind of negativ. I do have some inflamation in my small intestine, 'similar to that of celiac', but not enough for it to actually be celiac, it seems.

I have just about the whole list of symptoms for celiac, including perifiral neuropathy, and when I eat gluten I will throw up within 15 min. That was offcours making the gluten challange quite trying, but I feel confident some gluten made it all the way down to my intestine every day.

 

Obviously I can not have gluten, for whatever reason, and the european 'glutenfree' foods hold alot of wheatstartch, of about 20 ppm of gluten, this is enough to give me some symptoms. So I only eat naturally glutenfree foods and tht works well for me, but I just can not understand how docs can say I don't have celiac, when none of my tests are negativ and with the symptoms and high sensitivity that I have?

Also, at the same time, I'm thinking that as I am more sensitive than most, my tests should be 'more' positive if all this was caused by celiac? I have had some of the symptoms ever since childhood, so this is not a new thing ,but I have eaten very little gluten the last few years.

 

Is it posible that I have had non celiac gluten intolerance for many years, that is just recently starting to develope into celiac? Or are the two not conected?

 

Some of the reactions I have seem sort of like allergic reactions, like itches, puffy face and stuffy nose, so I am now beeing sendt to a allegy specialist to see if I might be allergic to wheat, but I don't feel like that fits all thet well.

 

Does anyone have any thoughts or information aboute cases like this?

Were you already eating gluten-free when you got tested?

Mum in Norway Contributor

Mellon, it's really not that bad. I would not do it for fun, but it only last like 5 minutes. You get a sedative in the back of your throat, so it does not hurt.

If you think you might have celiac, you should talk to your doc about the testing. And keep in mind that if you go glutenfree now, it will be h**l going back on gluten to be able to be tested later on.

Mum in Norway Contributor

Kareng, I was glutenfree light for years, but not totally glutenfree, and I did a glutenchallange for about 5-6 weeks prior to the biopsy.

Mellon7373 Newbie

Thanks for the advice, I will go to the doctor tomorrow and see about a blood test as I've only been gluten free for one day.

Mum in Norway Contributor

That is good to hear :) One day will not make much of a differens. If the bloodwork comes back clarely positive, you can consider if that is good enough for you to trust it, or if you want to do the biopsy to bee 100% sure


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



Celiac.com Sponsor (A8-M):



Mellon7373 Newbie

My mum is trying to tell me not to get tested. she thinks I'm overreacting as I've had a lot of stress in my life recently. she said the doctors will just tell me that it's a stomach bug. I need to know how seriously doctors will take me? if I say I want the blood test will they give it to me? or will they be like my mum and tell me to consider other causes. She has said I should just stay off bread and dough products for now and see how it goes, so I'm going to do that since it's the weekend and I probably won't get a blood test til Monday anyway

Mum in Norway Contributor

I don't know what your doc will sey, that depends. Some will have you tested 'just in case' for almost no reason, others will rather not test. But I realy would recomend you get tested before you go glutenfee. You can stay mostly off gluten for the weekend, but have half a cracker a day or so.

If you go of gluten and then back on, that i so much worse than just staying on the stuff...

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,196
    • Most Online (within 30 mins)
      7,748

    Dreamstar
    Newest Member
    Dreamstar
    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...