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Looking for input

Beck123

By Beck123
in Related Issues & Disorders

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Beck123 Rookie
Beck123
Posted

First of all thank you for taking the time to read this. I am looking for some guidance from people who are more knowledgeable on celiac disease/ gluten intolerance. A quick history on myself, so I can get to my questions. 
 

Back in 2017, I developed a horrible rash. Covered the back of my neck and my armpits and blistered. I couldn’t get into my doctor for about a month and during that time I did the elimination diet (basically cut out everything that can cause an allergic reaction or inflammation). I only ate veggies, fruits meats, some nuts. By the time of my doctor appointment, my rash had cleared up and I felt great. I had slowly introduced foods back in and determined it to be gluten.  My doctor called my rash a “gluten rash” or dermatitis herpetiformis (no biopsy was performed because my skin was clear)  from the pictures I showed him. He told me that there was no way to diagnose celiac disease without a biopsy and to eat gluten for several weeks and didn’t recommend it, since my skin was clear and no other issues.  I continued with a gluten free diet and felt great with no rash outbreaks or symptoms for several years. 
 

Fast forward to 2021, I give birth to my daughter. Completely healthy and happy pregnancy. After birth, we went out to eat several times and then at a family gathering I got severely glutened. My armpits mainly flared up with an angry, blistering and painful rash. I have struggled to keep my skin completely clear and go back into “remission” or whatever you call it, since giving birth to my daughter. At this time, however, I haven’t had a new outbreak in several months but have a very small rash on the back of neck that will not go away. Some days I feel like it’s healing and going away and then other days I feel like it’s irritated again. My doctor told me the rash was “inactive.”  I have been very diligent in being completely gluten free and my whole household has gone gluten free to support me. In addition to the small rash on the back of my neck, I have neck and hip pain (can be described as joint pain) that waxes and wanes depending on the day and I feel exhausted some days. I am only 33 years old and I feel like all of these things are linked together. 
 

Within the last month, I visited my doctor and he ran blood test to diagnose celiac disease. It came back negative, but the test clearly stated that if you have been gluten free, you will get a false negative. My doctor referred me to an allergist. 
 

Now my questions, is an allergist the best doctor for me to see for this? Is there a specialty doctor I should see for possible celiac disease or gluten intolerance? 
 

Is my body just taking time to heal itself after being glutened so severely (almost a year ago) and pregnancy? Should I still be concerned with my symptoms that I am somehow someway consuming gluten? Although, I don’t see it being possible. I have cleaned out everything in my house, down to my spice cabinet. 

mid my neck, back and hip pain possibly related? This is new to me.

 

Sorry this post was so long. I am just at a loss and want to feel normal again. Thank you so much in advance for any input and taking the time to read this lengthy post.

 

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trents Grand Master
trents
Posted

"Down to" and including or just "down to" the spice cabinet? Spices can be sources of gluten through cross contamination or purposely from wheat being used as a texturing agent.

I wonder if you have developed other food sensitivities in addition to gluten. This is very common, in fact, typical with the celiac community. It would probably be wise to get some food sensitivity testing done. Check out the ALCAT method. Scott Adams generated an article about ALCAT on this website based on his own experience. I suppose an allergist may be the place to start but give consideration to a holistic health practitioner as well.

Your neck and hip pain suggest you have some inflammatory processes going on which could be food sensitivity related. Or possibly RA or some autoimmune condition. If you have celiac disease (and it sure sounds like it) you already have one autoimmune disease and they tend to cluster. Over time, many or most celiacs will add some other autoimmune disorder or disorders. Not what you wanted to hear, I'm sure.

Have you ever had an endoscopy/biopsy of the small bowel to check for celiac disease?

Beck123 Rookie
Beck123
Posted
  • Author

Including the spices. And no I’ve never had an endoscopy or biopsy. I was told by my doctor that I would have to eat gluten for 6 weeks before the biopsy and he didn’t recommend it.  I will make an appointment with an allergist. Thank you. 

trents Grand Master
trents
Posted

The Mayo Clinic guidelines for the pretest gluten challenge for the endoscopy/biopsy is two slices of wheat bread (or the gluten equivalent) daily for two weeks. 6-8 weeks for serum antibody testing.

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