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Gluten and Endoscopy pre-diagnosis

Airlion

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Airlion Rookie
Airlion
Posted

Hi there, 
I am a 40 year old who has been dealing with stomach aches, mega skin rash and gastro issues since 8 years old. I also have had headaches. I was diagnosed with neurological-dermatitis (stress based itching) and eventually eczema, psoriasis, IBS. I have done IgA / IgG food testing with a naturopath a number of years ago and I had over 36 foods show up. One of which was gliadin. I have been in hospital a few times after beer and pizza for a week on a trip, and another time unsure of what happened. Those attacks were 20 years ago and I was not aware of celiac. I eventually started to realize that if I stayed away from wheat I felt way better. For years now I have gone off and on wheat. Every time I eat wheat, my rashes get worse (hive-like), I feel like I am having a hot flash after I eat, sometimes I have severe pain in the middle of the night with nausea and I get soooo fatigued. I also have sore hot joints and hands, canker sores and sometimes an incredibly hot tongue. I had a colonoscopy with no follow up. I had celiac blood test after having only eaten wheat a bit. All came back negative. I decided to pay for gene test through GLUTENPRO. Also "extremely low" chance. I now have a biopsy booked for Oct 12th. I have GERD so I had cause for endoscopy. 

 

My GI did not say to eat gluten and today I decided to look. I have about 3 weeks. Is that enough time if I was not 100% off gluten and if now I overload on it? Will more gluten daily mean a more accurate test? I know they say 2 pieces of bread a day, but if I eat more than that will it help to be sure? 

I am endlessly frustrated. But also trying to just accept that this long road has had its' lessons along the way. 

Thanks folks! 

kj

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cyclinglady Grand Master
cyclinglady
Posted

Yes!  Please consume gluten starting NOW before your endoscopy.  A gluten challenge for an endoscopy to obtain intestinal biopsies is between 2 to 4 weeks.  Better to be safe as do more than two weeks in my non-medical opinion.  

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Eating more than two slices of bread is not necessary for testing,  but it might be the time (if you can tolerate it), to load up in case you might have to go gluten free for life!  

It is good that you are trying to determine the cause of your GERD and other issues.  Keep us posted and welcome to the forum.  

 

 

Airlion Rookie
Airlion
Posted
  • Author

Thank you for your response! I am in a kind of panic because it has been 30 years with no answers. Just "must be stress" and "itching is just a habit..." yet my skin is soooo itchy with these liquid filled bumps. I had them all over my arms, chest, back bum, scalp, neck, face and at one point thighs. Going off dairy, wheat and all the foods that were positive for IgG from my naturopath, I managed to reduce it to upper back, chest and occasionally scalp.

I loaded up yesterday on gluten, in a bit of a panic... bloat, head itching, little liquid filled bumps, all came out, and my head is soooo itchy. I have wondered about DH for a long time now. It sure would make sense. I am wondering if it is worthwhile to make an appointment with my dermatologist to ask for a biopsy. He has said that I have eczema, psoriasis and a stress rash caused by yeast (I forget the name of it...) I find when I eat wheat also I get puff, inflamed eyes, inflamed mucus membranes and I look like I have eaten a lot of salt... puffy. And oh the gas....

After so many years I am almost hoping for a positive biopsy just to have a definitive answer! Is that awful? 

cyclinglady Grand Master
cyclinglady
Posted

So many of our members (like me) took years to finally get an answer to our many symptoms that plagued us for years or even decades.  Even if your endoscopy (or skin biopsy) is negative, consider going back to gluten free.  

Whule you are doing the challenge, take the time to keep researching DH and celiac disease.  Read our DH section of the forum.  It contains lots of sensible advice from people who live with DH.  I can share that DH suffers seem to require a very strict diet.  

Hang in there!  You are not alone.  Ask questions.  Be persistent.  Document (keep all your medical records).  Good health can be achieved!  

Airlion Rookie
Airlion
Posted
  • Author

Thank you for your encouragement. It is above and beyond appreciated. I have another question. Is it common to have pain where gallbladder is when glutened? 

cyclinglady Grand Master
cyclinglady
Posted

Everyone’s glutening symptoms can be different, so hard to say.  But gallbladder disease has been linked to celiac disease.    I had my gallbladder removed (non-functioning) years before my celiac disease diagnosis.  Bet I would still have it if I had been diagnosed sooner.  

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  • Posts

    • knitty kitty
      Feeling ill

      By knitty kitty · Posted

      Welcome to the forum! Keep in mind that if you quit eating gluten before all testing is done, you may have inaccurate, possibly false negative, test results.  When you stop eating gluten, your body stops making the antibodies which are measured in the blood tests.  Stopping gluten before an endoscopy may make the intestinal damage harder to detect, and a false negative biopsy may result.  As uncomfortable as it is, finish all testing before going gluten free.  
    • Scott Adams
      Feeling ill

      By Scott Adams · Posted

      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      fed up italian

      By Scott Adams · Posted

      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant label-reading and vigilance required. But please know that you are not alone, and many others have walked this path and come out stronger on the other side. Healing takes time, and while the brain fog, fatigue, and bowel symptoms can be discouraging, they often improve as your body begins to recover. It’s great that you’ve hired a dietitian—that’s a big step in supporting your healing journey and ensuring you’re getting the nutrients your body needs to rebuild. Remember, each small step you take is progress, even if it doesn’t feel like it right now. It’s okay to feel sad and angry, but also try to give yourself credit for your strength in facing this. The fact that you pushed for answers shows how resilient you are. While the road ahead may have challenges, many people find that over time, they feel better than they ever imagined possible once their gut begins to heal. You’ve got this, and the celiac community is here to support you every step of the way. If you have time, this book was published on Celiac.com's and you might find it helpful: Also, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • trents
      Feeling ill

      By trents · Posted

      Welcome to the forum, @Whyz! By "half way to being diagnosed" I assume you mean you have had the blood antibody testing done but not the gastroscopy with biopsy. Is this correct? Were the results of your blood work positive for celiac disease?
    • trents
      My 5 months of Struggle

      By trents · Posted

      Three days of no gluten is not likely to have much impact on serum antibody test results. I have more concern over exactly what test or tests were ordered. When you get the results back, please post them including the reference ranges for the tests for negative vs. positive. What country are you in? Do you have much choice in what doctors you see? Sounds like it might be a good idea to seek out another physician who knows what they are doing in this area of disease diagnosis. At any rate, you have the link I shared above outlining the various tests that can be run so that might be a resource you could share with a physician.
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