Was bad and suffering the consequences.

[Cyleet]

So about 10 years ago our family returned to the mainland after 8 years in Hawai`i.    I was in my 50's and thought I was in pretty good health. Shortly after getting settled, I started having itchy rashes to the base of my hairline, and it spread over my scalp, around my forehead, ears and eyebrows, and in my eyelashes.  (Strangely, right before we left Hawai`i I had an eye exam and the optometrist said she saw crusting around my eyelashes, but I had never noticed an issue.  While living on O`ahu I did begin to have episodes of severe headaches and fatigue, a couple time a month.)  My doctor told me it looked like I was allergic to something, told me to "find out what you are allergic to), and referred me to dermatology (their response was "Seb Derm" and topical steroids.)  Thanks to Facebook's algorithms, I ordered the Everlywell food intolerance testing kit, and was astounded to find sensitivities to gluten, wheat, eggs, almonds, mushrooms, green peas and brewer's yeast. ("That can't be right.  I can eat anything!") So I began the journey to stop them.  So over these years I have been doing better, the rashes finally went away and I KNOW when I've been bad.  But I never had a full body reaction. 

Fast forward to last week.  I was taking an antibiotic for a UTI, and decided I wanted to splurge on some fast food with the family.  They have been occasionally supportive, but complain sometimes about my dietary needs, especially when we are eating out and around holidays. So I ate some Bojangles chicken and a biscuit.  A couple of days later it was a slice of bread at the steak house, and a questionable salad dressing that may have included mayo (eggs.)  Aaand then there was the visit to Sonic with my daughter this past Sunday, where I chowed down on tater tots and a hot dog with the bun.  That night I noticed a couple of bumps on my hiney at bedtime.  This was only the beginning.  In the morning it was ON LIKE DONKEY KONG!!

Today I have some facial swelling, itchy hives all over my body, I have been to primary care early this week and got steroids.  I went to the ER last night when I was having problems swallowing, and came home with a Epi-pen if it reoccurred.  Today my family is attending the family turkey day, and I stayed home to suffer for my sins.  Steroids calm it temporarily, and I'm popping benadryl and allegra to help control the itch. redness and maybe the swelling.  Airway is safe, swallowing is fine, but OMG I want some gut and skin healing.  I think I finally hit the perfect storm with the antibiotics and overloading the gluten. I pray it goes away and I don't have further complications.  Pray for me.

Thank you for coming to my TED talk.

[trents]

Welcome to the forum, Cyleet!

So, we need some clarification. Have you been officially diagnosed with either celiac disease or NCGS (Non Celiac Gluten Sensitivity)?

In describing your symptoms your never mention GI distress of any kind but then at the end you remark you want some "gut and skin healing". Can you clarify about the gut issues?

Essentially all the symptoms you describe (with the possible exception of gut distress which you haven't elaborated on) would seem to be allergic reactions rather than celiac disease or NCGS. Celiac disease is an autoimmune disorder, not an allergy and NCGS is probably not an allergic reaction either, though we don't understand as much about the immune system pathway as we do for celiac disease. Food sensitivity testing like you have had done and allergy testing cannot be used to diagnose celiac disease or NCGS. There are some antibody tests that are specific for celiac disease. There are no tests for NCGS. Celiac disease must first be ruled out. The two share a lot of symptoms in common.

Having said all that it is entirely possible to have an allergy to gluten as is the case with any protein. But the reactions you describe indicate to me an allergy problem of some kind, possibly to gluten/wheat or several other food substances.

[Cyleet]

Hello, thank you for replying!  No, I have no official diagnosis.  I have never experienced the GI issues that individuals diagnosed with Celiac describe with bloating, pain, cramping, diarrhea, etc.  Frankly, my medical providers are less than interested in my issues.  I have pretty much self-diagnosed since it has become obvious to me over the last few years that avoiding gluten altogether helps to control my skin reactions.  That's why I posted in the Food Intolerance and Leaky Gut forum.  I have been reading about DH as well, but from descriptions here on Celiac.com and images from dermatology providers online, that's not what I have.  I am grateful for that.

If this is leaky gut, then the gut healing does apply, but as you stated that needs to be diagnosed officially. 

Your response has provided clarification, thank you for the feedback! After re-reading my post from last night, I can see it was not clear. I will talk with my primary care provider regarding further testing. Please delete my post, I agree it really is confusing.

[trents]

Thanks for the additional information. We can't delete posts but there really is no reason to. The discussion it led to may be of help to someone else. You should know that celiac disease does not always produce significant "bloating, pain, cramping, diarrhea". Many who have celiac disease have very minimal or no discernible GI distress. We call them "silent celiacs". The GI distress may not come until there is advanced damage to the villi that line the small bowel, which is the hallmark of celliac disease and why it is an autoimmune disorder and not an allergy. I think it is true that it is difficult for most people to comprehend that celiac disease is not an allergy.

Leaky gut goes hand in hand with celiac disease and it is also true that celiacs typically develop intolerance to other non-gluten food items over time because of the leaky gut issue. Chief among them are dairy but also egg and soy intolerance are common.

You might want to look into MCAS (Mast Cell Activation Syndrome) and histamine intolerance because of your many allergic reactions.