gadamek

On ‎6‎/‎27‎/‎2018 at 6:31 PM, Hummingbird said:

Hi all. I'm new here even though I've poured through the forums for the last year (since being diagnosed with celiac) looking for helpful hints, similar stories, etc.  It's been invaluable, and I thank you all for that.  I've finally decided to join and post because my situation seems to be outside a search box entry, and I need some advice.

I'll try to make this as concise as possible:

I was diagnosed last July after going in for a blood test.  I specifically asked for the test because a family member was positive and I was developing weird symptoms. The top of my left toe was numb and I was getting tingling in my face.  The test came back positive. Since then, I have another test after 6 mo of gluten free diet and the test was positive but the numbers were lower.  I also had an endoscopy 6 mo after being gluten free (I know I know, I should have gotten it right away, but I was scared of how invasive it is!) and it showed that things were looking good but that I had gastritis. She said I still have celiac diagnosis.

When I first went off gluten, I went through horrible withdraws for weeks.  Motion sickness, fatigue, headache, irritability...it was awful.  But then...after a few weeks...Oh, my heavens I felt like a superhero. Energy, clarity of mind, groundedness, happiness, no more anxiety!  It was like a dream. I was like, "is this how everyone else has been living this WHOLE time????"  It was wonderful.  About a month later I got cross contaminated from something and things began to unravel. The glutening was enough to make me almost quit the diet. I got through it, but then started cycling through symptoms every couple of weeks - depression, anxiety, joint pain, head rushes, vertigo, heart palpitations, hypoglycemic type feelings after eating... it was weird, but I was still committed to getting through. 

Flash forward to the last 6 mo. I seem to be getting all the signs of MS, but my MRI's are all clear except one small white spot they said they weren't worried about. I'm getting a follow up tomorrow to see if anything has changed. It all started on the right side of my body - Buzzing in hands, feet, arms, numbness inside my finger tips, pressure on my arms and legs like something is there, and burning and tingling in my face. Now it's crossed over to the lefyt side.  I do have a herniated disc in my lower back that they're about to operate on (so much for invasiveness right?!)  but it's on the wrong side from where this all started.  My EEG's were normal which makes zero sense since the top of my toe is numb (I have a follow up with a new neurologist for a second opinion in a couple weeks). 

Last few notes - They gave me gabopentin and it seemed to make it worse so I went off it.  I have had a few instances over the years where I can't sense the correct cool temperature of water (it feels warm) with my fingers and this recently happened again.  Stress seems to make the buzzing more intense.

My whole family has gone gluten free in the house since day 1, so I don't think I'm being contaminated---but even if I was, wouldn't this be getting better after going off all the gluten I had been eating instead of getting markedly worse after going completely cold turkey?

So frustrated.  Going through the social issues of being gluten free was enough, but I was so ready to feel healthy. I was so excited I had an answer. And now everything is worse.  Anyway... Ringing any bells? Any advice?  Thanks

I don't have malabsorption issues or deficiency issues all my blood work came back normal and I'm having same issues weakness , joint pain , muscle aches , fatigue , burning sensation in legs and arms , pins and needles in fingers and toes , no upper or lower body strength , ringing in my ears off and on legs feel cold and ache. All blood work normal and hemoglobin , iron and ferritin levels normal I'm on a strict gluten-free diet Doctors are clueless and I'm about to loose my job because I'm unable to work I drive a tractor trailer and well as move heavy material in the electrical industry. Next stop is a Rheumatic doctor I'm seeing a Celiac specialist at the University of Pennsylvania Hospital and just had a colonoscopy and endoscopy that they took biopsies of small bumps a CT scan earlier revealed two non-specific enlarged lymph nodes  that may have to be removed before they become Lymphoma. Celiac Disease is nothing to fool around with I wasn't diagnosed for 3 years before they figured that out. I've asked my primary to test for Lupus he doesn't think that's what I have. It's a waiting game at this point will be filing out state benefits for financial help and medical help Social Security will be next.

funny thing is I have no deficiencies at all this is why the doctors are all stumped The GI doctor I see at the University of Penn said she thinks the Celiac Disease damaged my bone density and muscles to the point I may not regain my strength I had before I was diagnosed I went from playing football , softball , swimming a very active life at 44 to nearly no activity at 47 and currently I'm out of work on FMLA until the can figure out what is going on I drive a tractor trailer and with the weakness issue that makes it very difficult to do especially with the leg cramps like Charlie horses. These stupid skin rashes never want to heal an go away I'm hoping in the coming weeks the figure something out. I will try these out thank you for your input.

(I use Liquid Health, Stress & Energy and Neurological Support 1 tbsp each 3 times a day as a full spectrum liquid B-vitamin blend, I use the D3 drops from the same company.)

My symptom's started 3 years ago and I was finally diagnosed last year and I have been on a gluten free diet since my diagnosis my recent blood work shows my Celiac is stable with the diet but still having symptoms that my primary , Hematologist or GI doctor can explain overall weakness , fatigue , joint pain , sleepless nights , itchy dry patches , achy like flu symptom's , headaches , SHB and bathroom issues. I had a Colonoscopy and Endoscopy last year when I had my diagnosis and was given a clean bill of health other than Celiac disease and now with a specialist that deals with celiac disease I had a CT scan with dye and they found two non-specific enlarged lymph nodes in my abdomen. Now have Colonoscopy and Endoscopy scheduled. I also had a iron insfusion because my Ferritin level was at 9 and its supposed to be 30 for males and 60 for females all my blood work has come back normal. Has anyone else had a difficult time getting better after their Celiac diagnosis? I was told I may have Crohn's or Lupus  or another Autoimmune disease. Just curious.