Not your typical symptoms

[zoomers180]

I keep reading about horrible diarrhea, etc. I have the other extreme. Antibody test came back negative over a year ago. Then my gallbladder came out last October. For a short while after my surgery, the abdominal distention I chronically experienced went away. Then my stomach blew out some 4-5 inches. I had a chronic "knot" feeling in my rib cage. I kept telling my husband..."I'm not digesting my food". It took months of more tests, but I found out I had a bad infection in my GI tract. I was right...doctor said I wasn't digesting my food. She and my allergist both said, "take out the gluten" and see how you feel. Your antibody test may have been a false negative or it could be that you are "just under the radar".

Well, I felt better in a matter of days. Fabulous in 10 days. Bloating went down. Started going to the bathroom normally. Then yesterday morning, after a good 2 l/1 weeks, I tried steel cut oats for breakfast as a test. I also slipped that night and without thinking ate an egg roll (not thinking that the wonton wrapper has flour in it! DUH) By this morning I "blew out again" several inches and back came the "knot" feeling. Also, when I got up this morning my fingers were numb and tingling (just read this on another post!!)

Does it sound to anyone else like I'm gluten sensitive?? My "symptoms" seem atypical, yet I believe I am, and may even be Celiac. My allergist said "don't bother with the biopsy because if they find you are Celiac, all they can do is tell you to go home and eat gluten-free anyway! just take it out and see how you feel and that will tell you."

I just would welcome ANY feedback!! -- Carole

[aklap]

Hi Carole,

Welcome to the board!!

With a response like that to the diet, it does sound like you are on the right track!! I would want to make sure they rule out other gastro/medical issues too. It's not uncommon to have multiple things going on. As we discussed in another recent thread...getting the biopsy is a personal preference. The allergist is right to a certain degree. Some docs will diagnose on response to the diet alone. Others must have blood work and/or positive biopsy. Currently the Gold Standard diagnosis for CD is biopsy. That does not take in account those of us that are gluten sensitive. Gluten still affects us - we just don't have the villi damage to prove it - thus the docs think it's in our heads (yeah right). Being in the gray area can be difficult. But if you know you feel better off gluten...I say GO FOR IT!! People put themselves on diets all the time for various reasons. I can't think of a better reason!

Celiac Disease or Gluten Sensitivity symptoms can be quiet atypical. Sometimes NO SYMPTOMS AT ALL!! It has been called the Great Imitator, because it can present itself in so many different ways. The numbness & tingling is one of them - it's called Peripheral Neuropathy. The numbness & tingling may also be caused by B12 deficiency - which if you have CD - could be an absorption issue.

Here's some more info if you haven't seen it already:

GIG Gluten Sensitivity Info: http://www.gluten.net/downloads/infopackets/Gluten%20Intol%20not%20CD.pdf

Gluten Sensitivity as a neurological illness: http://jnnp.bmjjournals.com/cgi/content/full/72/5/560

Neurological Manifestations of GS: http://brain.hastypastry.net/forums/showthread.php?t=2127

B12 deficiency: http://brain.hastypastry.net/forums/showthread.php?t=3742

The Gluten File - a massive collection of gluten knowledge: http://brain.hastypastry.net/forums/showthread.php?t=2132


I wish you well in your knowledge quest!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa