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Afraid to do gluten challenge…

Dianasolvei
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Go to solution Solved by Scott Adams,

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Dianasolvei Rookie
Dianasolvei
Posted

There is a very strong possibility that my lifelong IBS and gluten sensitivity might actually be celiac, and my doctors have wanted me to do a gluten challenge. I got glutened and very sick, and now I have been off, gluten for one month and starting to feel a little better. I do much better on a gluten-free diet and every time I am exposed to gluten I end up getting sick and have a trip to the ER for severe constipation, kidney pain, microhematuria, and other things. This time my liver got involved….elevated liver enzymes. They’ve never tested me for celiac in hospital and I’m always really out of it so I can’t ask for the things I need. My brain just sort of goes off-line also with very foggy thinking. I’ve had it with my main stream doctors, and went to a Naturopathic Doctor who did extensive testing and found that I had nutritional deficiencies. B12, etc. None of my regular doctors ever did that testing. I’m really pissed off. They sort of ruined my life. I really don’t want to do a gluten challenge because I’m starting to feel better and it’s going to take me over a year to heal maybe longer. I have the DQ8 gene. Is there any other way to get diagnosed properly besides a gluten challenge?

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  • Solution
Scott Adams Grand Master
Scott Adams
Posted
  • Solution

Unfortunately it's the only way that is currently used by doctors. I've heard of research on other ways, but nothing that is available at this point. 

Since it's very clear that your issues are caused by gluten, why is a formal diagnosis so important?  It seems like you already have your answer, and your genetic test results indicate that you could have celiac disease.

 

 

Dianasolvei Rookie
Dianasolvei
Posted
  • Author

Yes, my issues are definitely caused by gluten. I guess I just wanted to have a formal diagnosis because I want it in my chart, so nobody diagnoses me the wrong way ever again! But, I guess it’s not 100% necessary, I will eat the way that is safe for me!

knitty kitty Grand Master
knitty kitty
Posted

@Dianasolvei,

You could go ahead and get an endoscopy now WITHOUT a gluten challenge.  Have lots of samples taken.  This way you would get a baseline with which to compare future endoscopies to check for healing and if other problems arise.  

Some people who have really severe reactions and nutritional deficiencies may have flattened or absent villi, a very strong indication of Celiac Disease.  It can take several months to a year for the villi to grow back.  Still, the sooner it's biopsied, the better.

People with gluten ataxia have antibodies against gluten that attack our nervous system.  Blood tests for celiac disease check for tTg 2 antibodies.   tTg6 antibodies are tested for in Gluten Ataxia.   

https://pubmed.ncbi.nlm.nih.gov/23576621/

And...

https://www.sth.nhs.uk/news/news?action=view&newsID=1264

Scott Adams Grand Master
Scott Adams
Posted
3 hours ago, Dianasolvei said:

Yes, my issues are definitely caused by gluten. I guess I just wanted to have a formal diagnosis because I want it in my chart, so nobody diagnoses me the wrong way ever again! But, I guess it’s not 100% necessary, I will eat the way that is safe for me!

One thing to consider, once it's on your chart you can't take it off, and you may pay higher private health and/or life premiums for life.

Dianasolvei Rookie
Dianasolvei
Posted
  • Author

Oh wow! I never thought of that.

Scott Adams Grand Master
Scott Adams
Posted

Yes, when I had to get a new life insurance policy last year I was only able to do so by paying premiums that are closer to someone who is 10 years older than me. 

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      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      results from 13 day gluten challenge - does this mean I can't have celiac?

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

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    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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