Recovery

[GlutenPhobe]

Glad to have found this site. None of my doctors seem to know much - correction, "anything" - about Celiac. Not even Spellcheck knows what it is because it always gives me the red underline.  I get Google Alerts on Celiac Disease which brings everything published on the subject on a daily basis. 

Some pharmaceutical  companies are starting to pay attention and are starting research on anti-immune problems including Celiac, which is encouraging.  It seems that the young diagnosed with Celiac can get over it relatively quickly with strict gluten-free diets.  I get the sense, though, that the older you are, the more gluten is stored in your system and the longer it will take. 

I am ancient. I was diagnosed with Celiac through a blood test over 10 years ago. But I had no symptoms, pain or discomfort, and my doctor didn't push gluten-free. So, I continued to gobble up gluten by the ton in Ciabatta, Pumpernickel, Russian Potato Rye, Bagels, Croissants, Pretzels, Challa, English Muffins, you name it. 

Concurrently other doctors became mystified by some tests which showed strange things which I now realize were all related to Celiac. 

In a two-year period I lost close to 40 pounds.  Most of us would welcome the loss of some weight but my research indicates that it is not a normal weight loss.  It seems to involve our top half.  My face has become much thinner, I've lost chest muscles and arm muscles but kept most of my gut and behind.

It might be useful if every reader here sent in a list of their symptoms that MAY be related to Celiac disease. Medicine still needs to identify all the Celiac related symptoms.  I never suffered the classic symptoms: constipation and/or diarrhea or both. Our poops, some times resemble a mix of rabbit droppings and horse balls. My main suffering comes from hives - big welts on forearms or thighs or legs or belly, or crotch, or on the hips - these turn deep red, burn fiercely and itch enough to bring on tears. 

An allergist sent me to a dermatologist to get a biopsy of the hives (which he is not certain ARE hives) The dermatologist suggested I just come without an appointment whenever this condition is "in bloom."  For the next few weeks, these hives surfaced on late Fridays, would have me suffer on the weekend, but by Monday would diminish, leaving an inadequate sample to take to the dermatologist for the biopsy.  Finally a big one cropped up on one of my forearms during the week and when I called to inform the dermatologist that I was coming, I learned he was out of town for the whole month of May.

The less obvious but more dangerous effects I now have diagnosed are Celiac's interference with my system's ability to absorb calcium, leading to Osteoporosis and also Anemia.  Yup. Got both. 

To stay gluten free takes diligence. We need to read EVERY label for content before consuming. I just today discovered that the potato chips, I like to have now and then, have gluten, and I thought I had developed hawk-eyes for gluten detection.

Last year, I had mentioned to a cardiologist in one of our major hospitals that I got the sense that medicine still had much to learn about the heart.  He leaned close to my ear, lowered his voice and whispered, "About the whole body."

I suffered gut ailments for 30 years. Pain would come at unexpected times and make me miserable. It started in Boston. They turned me inside out at the Lahey Clinic and prescribed Bella Donna. In New York it was some anti-spasmodics; in Teaneck, NJ,  it was something else, and then in Toronto, more guesses by medics - all trying to help me cure something no one had taught them how to identify. 

After thirty years of putting up with this annoyance, a solo doctor in Australia or New Zealand, discovered a bug he named Helicobacter Pylori. I was living in L.A. at the time and my doctor at the UCLA clinic was convinced that this is what I had. Two antibiotics taken concurrently for ten days ended my 30 year suffering.  It would be wonderful if some such discovery about Celiac would come about. 

[kareng]

I am sorry that your doctor was not able to impress upon you the importance of a gluten free diet.  

There is a lot of research going on about Celiac disease and possible cures or treatments.  The Univ of Chicago (site linked below) is one that has been active for many years.  There are many others.  Perhaps you would find it helpful to read a bit so you understand the importance of being strictly gluten-free from now on.  Some issues can resolve or slow down.  

 

Here is a list of of the most common symptoms of Celiac.

https://www.cureceliacdisease.org/symptoms/