Gluten and Endoscopy pre-diagnosis

[Airlion]

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

[cyclinglady]

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]

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]

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]

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]

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.