Subscribe to FREE Celiac.com email alerts
bigapplekathleen added a topic in Celiac Disease - Related Disorders & ResearchIncredibly Frustrated/just Need To VentHi everyone,
Ok... I just need to vent here. Thoughts and suggestions are welcome, though, if you have had experience with the same issues!
I have a history of celiac (actually, "non-celiac" gluten intolerance and severe wheat allergy), lymphocitic colitis, chronic apthuous ulcers, ever-changing thyroid numbers - on the low side, thyroid nodules, ovarian cysts, fibrocystic breast lumps, and lots of other issues. I am now dealing with extreme hyperhidrosis. I saw a dermatologist Thursday hoping for botox to stop this, but he said it's way bigger than botox and gave me Robinul until I can see an endocrinologist. It's a 2-month wait to see an endo here in my town. However, I live 45 minutes from NY City, so I will call Monday to try to get in to see someone. I have been on prednisone for 20 months for the apthuous ulcers and other auto immune symptoms. Whenever I try to taper off all the way, I get really sick below 5 mg. I made it down to 2 mg a day for a while and got really bad sores again and lots of aches and pains. I also take Entocort 6mg (for 12 months now). I use the Nuavring to control the ovarian cysts.
Since dropping my prednisone dose this spring, I feel achier and achier. The mouth sores are always there (after having gone away for a while). My body isn't producing cortisol on its own. MY cortisol level is 6. It was 10 in January. The doctor said it needs to be a minimum of 18; she said at 5, I would have to be in the hospital.
So, here's my frustration. Those of you that know me know that I am a professional who works at a very high level. My life is busy and I am very involved in many things. Yes, my life is busy. Yes, my life is stressful sometimes. But, I stick to a wheat-free diet, I eat mostly very healthy natural, unprocessed foods. Yet, I still feel like crap.
So, do I wait 2 months to see an endocrinologist, call to see someone at a regional medical center earlier than that, go back to my naturopath, or go back to my celiac doc (one of the best)... I actually have a regular check-up appt with him in June, but don't know if I really need to see him. I just need to see someone who can fix this endocrinological stuff. I am sick of being sweaty and tired. The Robinul makes me sleepy (counteracts the steroids, i guess!)
- 1 reply
- 992 views
bigapplekathleen added a topic in Celiac Disease - DoctorsTrying To Find Celiac-aware Dentist In Upper Fairfield County CtI posted something on here in 2004 about my fabulous dentist in Stamford, CT who was very Celiac-aware and took really good care of me! Unfortunately, he has sold his practice and his office is a disaster now. I don't trust going there at all. So, I am trying to find a new dentist in the town where I now live. I have called 4 or 5 dental offices this morning and two basically told me they wouldn't accommodate Gluten-Free! Does anyone have any recommendations for dentists in Danbury, Brookfield, Newtown, Bethel, Ridgefield, Redding, Wilton?
- 1 reply
- 1,122 views
bigapplekathleen added a topic in Celiac Disease - Related Disorders & ResearchLymphocitic ColitisHi there,
I was just diagnosed with Lymphocitic Colitis 2 weeks ago. I have been on a strict gluten-free diet since August 2003, when I was diagnosed with Celiac. My biopsy 2 weeks ago shows no current sign of Celiac, so that at least shows I am following the diet!
So how's this for a story? I have been horribly ill for the past year. It all started when I fainted on a plane in April 2008 and hit my head. I had a concussion and a fever. No one knew why I had a fever. My doc suspected Lyme Disease, but the tests were negative over and over. Another doctor finally diagnosed Epstein Barr and low vitamin D in June 2008. In September, the mouth sores started. I had HUNDREDS of them in my mouth. It was disgusting. I got to the point where I could no longer swallow and ended up in the hospital. After tests for coxsackie virus were negative, the doctors were more baffled. Everyone thought the mouth sores could just be from the EBV or Celiac, but they were clustered and came by the dozens and hundreds. They put me on high dose prednisone and the sores stopped. Every time they weaned me off the prednisone, the sores returned, so they kept using the prednisone. They switched to colchicine for a while, but it didn't work. My rheumatologist put me back on the prednisone (low dose this time) in March. Meanwhile, they ran every blood test known to man and biopsied the sores. They were just apthuous ulcer - common canker sores. Blood tests showed lowered immune function and low Vitamin D. I begged my gastro to do an endoscopy and colonoscopy, but he refused, saying I just had one 18 months ago and it was fine. (But I wasn't so sick back then). Then in February, I ate at a restaurnat and became violently ill 2 hours into my meal there. I have never been so sick at a restaurant. The diarrhea that started that night lasted for 9 weeks. It only stopped when I took levaquin for a sinus infection for 5 days. Meanwhile, small bowel series with barium showed nothing. Ultrasound showed nothing. I switched to a new gastro and he suspected auto-immune disease & thought he could find it in a biopsy, but his staff couldn't fit me into the schedule for 2 months. I got sicker and sicker. Finally, I was so sick, they fit me in on an emergency basis. I had a 100 fever when I got there, raging thrush in my mouth, and such severe D that the prep for the colonoscopy seemed dumb. After the procedure, I got worse and worse and ended up in the hospital 3 days later with severe dehydration (fever, tachycardia, blood in stool). The ER put me on Cipro, which seemed to help, and they gave me diflucan for the thrush, and ran tons more tests, including an abdominal cat scan that showed nothing. My biopsy results came back 2 days later and showed Lymphocitic Colitis. The doctor immediately started me on 9mg of Entocort Daily, Pepto Bismol 6 caplets a day, in addition to the prednisone (5mg) and allergy pills that I already take. (To top it off, I asked the current gastro why the other gastro hadn't caught this on the colonscopy 18 months ago and he said the first doc had only taken THREE biopsies. The current doc then said that 12-16 are necessary for proper diagnosis of something like this....meaning the first doc hadn't done his job. The first doc, in fact, believed there was nothing wrong with me and even doubted my Celiac diagnosis, even though I am also a patient at the Celiac Disease Center.)
I cannot even begin to tell you how much better I feel on the Entocort. It took a full week for the D to stop, but now everything is back to normal. However, the gluten-free diet just isn't enough with this disease. Now I seriously have to follow a PALEO diet and also have to overcook everything - even fruits. I cannot tolerate dairy, soy, corn, and obviously, gluten. I seem ok with rice and have been eating a lot of steamed rice just to have SOMETHING to eat that will stay down!
I would love to hear from any other celiacs who are also dealing with LC. It seems like such a rare disease, from what I have read, and it's impossible to even locate an in-person support group for this. I have an appt with my nutritionist in NY City in 2 weeks to make a plan, esp. since I am not really absorbing stuff properly and am very concerned about deficiencies.
Also, when I got sick a year ago, I was preparing for a triathlon, so obviously those plans were put off due to the EBV, which is now gone. I feel better, esp. now that I can eat again, and hope to start training again soon, but this time it will be just for normal workouts with no race plans .
I would love to hear from anyone who has advice or who has been through anything like this.
Thanks so much!
- 2 replies
- 1,137 views
bigapplekathleen added a topic in Other Food Intolerance and Leaky Gut IssuesScd Diet Or Paleo Diet?Hi everyone,
After a 12-week bout with chronic aphthous ulcers (hundreds of them; I was hospitalized), a roller-coaster ride on high-dose prednisone for 11 weeks, and now dealing with daily colchicine (indefinitely) for control of the canker sores, I am back on the SCD Diet (which is very nearly PALEO, except for a some dairy on the SCD). My doctors cannot pinpoint the cause of my canker sore outbreaks (which keep coming back). I usually get canker sores when I get glutened, but have never had HUNDREDS of them. So, we are thinking that this may have been caused by a food sensitivity. The SCD diet seems like the safest choice right now as I try to get my body back to optimal health.
I am wondering if anyone here is also following this diet. I am missing my gluten-free snacks SO MUCH, but my body feels so much better on SCD. If you are following SCD, what do you do when you eat out in the city? I am carrying a cooler with me everywhere with very simple food, but am sick of not being able to join my friends for dinner in a restaurant. Does anyone know of any stores that sell SCD-legal foods (such a backed goods containing nut flours)? The thought of going through the holidays eating chicken soup and broiled meat is a little disappointing.
I should mention that i followed the SCD when I was at a point of terrible illness with Celiac, and it worked wonders. I also ate strict PALEO diet for more than a year after diagnosis, and it was great, too. It's hard to stick to either one, though, for an extended period of time, since no one else eats that way!
gluten-free since 2003 (Diagnosed with non-celiac gluten intolerance... VERY SENSITIVE to gluten)
Every possible gluten-related medical issue that you could imagine...
plus recently -
Vitamin D Deficiency 2008
Lowered Immunity (low IgG) 2008 and in 2003 when it was last checked
Chronic Aphthous Ulcers 2008
Epstein-Barr Virus (mono reactivation) 2008
- 5 replies
- 4,153 views