my username issue and tender tummy and real healing time

[ironictruth]

Ok...first order of business, so, I am a little flaky. Maybe a lot. When I joined months ago, I forgot my username or password so created a new account. I must have logged out of the 2nd one the other day and tapped into some place in my brain which enabled me to log into the first account. And now my stories are all disjointed. I will write the info down this time!

Anyway, after my recent stint in the hospital they did an endoscopy even though I have been gluten-free since March. It showed inflammation and white cell infiltration or something. I do not have any blunting on the samples they took or a copy of the report yet. My DGP IGA was 28, normal is under 20. It was 15 when randomly tested in July.

I have written before that my sibling was sero negative but biopsy positive. We are both DQ2. I was DGP IGA 21 and my primary suggested I go gluten-free in April 2015. After doing that for 8 mos I saw a GI who put me back on gluten for 6 weeks for the scope which was negative. He then forgot to run the bloodwork for a month during which time I was gluten-free. When he finally did, DGP IGA came back at 20. It then went negative.

I had all sort of crazy s$#& happen during these months. The GI and primary told me it could not be caused by gluten. I know I am repeating myself, but inflamed thyroid, bleeding adrenal gland, numbness in arms/hands, leg, face and throat, problems with my eyes, constant small belches, back pain, blood pressure drops, low heart rate, feeling like passing out, shortness of breath, twitching muscles, anxiety, mild plueral effusions, a rash that comes and goes on my stomach, neuro issues, migraines. It literally feels like my body got hijacked 8 months ago and has never been the same.

I have had halter monitors, ct scans, x-rays, bloodwork, and meds tossed at me. 

I have self treated with eating protein every 2 hours, taking liquid iron and monitoring salt/water intake.

7 weeks ago my upper stomach became tender to the touch and waves of nausea started. 

I did not start to heed the advice of smart folks like Cycling Lady, until recently and quit going out to eat. I also have cut most processed foods and only use certified gluten-free for the few non-processed items. I had cut dairy but accidentally had whey in my protein bar this am and am feeling weird. 

I know my pathology is only either Marsh 1 or 2 which does not confirm celiac and my DGP IGA was only 28 so it is still hard to believe all of this is caused by gluten. I feel like a baby going into the hospital but I had so much D, pain and dizziness I had no clue what was going on. It woke me up at 1am. The GI did say that my pathology and bloodwork is consistent with someone who has early celiac or who has it and has been on a gluten-free diet. I can tell you now, there is NO WAY I am going to do another freaking gluten challenge after this s$#&!

But, I am still scared. Scared it is something else. As I type I have "the sighs", my right eye feels droopy, right arm and throat numbness, stomach pain. I will quietly and hopefully blame the accidental dairy in my protein bar. 

Did anyone else get epigastric tenderness that was sore to touch? When did it go away? 

Do the other foods you react to cause similar symptoms to gluten?

It literally feels like there is a squeezing from my intestine that sends off a signal all the way up to my brain and affecting everything along its path. It has, literally, gone after an adrenal gland and thyroid and is now bothering my eyes. 

I am taking a week off of work to deal with the stress this has brought on and go to the doctors.

I was able to exercise in mid July and can no longer do so. I lost 8 pounds since then for no reason.

At least I know I am absorbing. I have to eat/drink nutrition drinks often but was able to get my RBC count and protein back up fairly easily. So I should quit my b%$@#ing. I have read the posts from parents of small children on here and my heart aches for them. 

 

[captaincrab55]

IMO, You need to find several new Doctors that understand Celiac Disease.      You need to be seen by a Dermatologist that knows Dermatitis Herpetiformis while you are suffering with a skin break out.

Good Luck

[kareng]

If you would pm Admin, with both user names, I think  he can put them together.  Tell him which name you prefer.  Or you can pm me and I will ask him and explain it.