Colonoscopy and Mast Cell Testing Results

Joefnh · Post by **Joefnh** » Sun May 27, 2012 4:07 pm

Thanks Tex, that's good info and I think I will up the dosage. I have been taking 5000IU for over a year now and it's only brought me up to 31.

Brandy it does sound similar to AS, but she certainly has had the issues with celiac disease and has been affected in many ways. I know with AS the basic treatment is exercise and anti inflammatories. I know I have had the hardest time with long plane flights, my lower back is usually killing me at the end of the flight. The last couple of trips to Brisbane accupuncture had really helped.

Kitty, what started this whole adventure for me was my doctor finding that I had a vitamin D count of 2, he was very concerned and finally listened to me about the D and pain I was having. It certainly is a problem to be that low and I have fought since then to keep it up in a reasonable range.

Nancy and Jenny, I'm game for a get together...any ideas?

mzh · Post by **mzh** » Sun May 27, 2012 5:14 pm

I was thinking about acupuncture as opposed to PT. I have a wonderful PT but it doesn't seem to hold after 3 months off and exercising.

Deanna in CO · Post by **Deanna in CO** » Sun May 27, 2012 6:15 pm

Joe,

My mom hates to take supplements, but her Dr told her to get her Vitamin D level tested recently. When her level cam back 6, he called her personally and immediately put her on 50,000 IU per week. She is supposed to get it tested again in 8 weeks and they will decide then what's next. So I wouldn't worry too much at least at this point. It sounds like your body isn't absorbing a lot anyway. I was taking 6,000 IT's per day for several months when I was tested recently, and my level was only 32. I upped my supplements to 10,000 per day and will have it tested again on September 1 when I can get my thyroid tested again too (sooner if I need a blood test before that, but I don't see any point in an extra "stick" if I don't need it). :-)

Deanna

TXBrenda · Post by **TXBrenda** » Sun May 27, 2012 7:26 pm

Hello,

I have been taking 10k IU of D3 for the last three years. Last year's labs showed my level to be in the upper fifties. In 2009, my level was 26. I have a lot of low back pain, but my chiropractor discovered approximately the lower third of my spine has calcium deposits around the facet joints. He took the x-rays after not being able to adjust that area after treating me for almost 2 years! I have heel spurs and bad knees due to my feet pronating. My pain doctor told me the calcium deposits were from inflammation due to my walking in a rocking motion from side to side. Now when my feet hurt I try to not walk that way. I don't have the other symptoms of AS so I feel confident that I don't have it. Lower back exercises and stretches as well as water aerobics do help keep my pain in check. Thought I would throw my two cents worth in here.

Joe, I hope your flare continues to lessen. Please give Nestle some scratches for me also.

Joefnh · Post by **Joefnh** » Sun May 27, 2012 7:50 pm

Brenda the calcium deposits in the facet joints are the hallmark of AS, you may want to get that looked at a bit further. Heel pain is also a symptom of AS and due to inflammation and calcium buildup in the heel. If not treated accordingly those calcium deposits will eventually fuse those joints. The physical regime and excercise is a key treatment by itself.

From what you Deanna and Tex have mentioned I will be upping my dose to 10k starting tommorow. I go in for blood tests every 90 days anyway and can ask to include the vitamin D measurement by a simple email to my GI doc.

MZH I use acupuncture on a weekly basis and it does help. I did go twice a week for a while, but now go once a week on Fridays. Like many treatments acupuncture is a tool, by itself it's not a cure all but a tool that helps the whole health picture.

Brenda Nestlé has received your tummy scratches and sends about a thousand tail wags back your way LOL

TXBrenda · Post by **TXBrenda** » Sun May 27, 2012 8:23 pm

Joe,

Thanks for the AS information. I have had MRIs since the x-rays were taken. The calcium deposits are not increasing in the number of vertebrae that are affected. Pain from the heel spurs has decreased considerably since I started wearing orthotics about fifteen years ago.

Feel free to give Nestle a tummy rub from me every day. I have known a couple of special goldens and she sounds like another one (I like all cats & dogs). My chiropractor would bring his grand dog to his clinic when his son was working. Jake was a wonderful addition to that experience. On days that he was feeling lazy or tired, he wagged his tail to let you know he heard your greeting. You just didn't rate him putting forth the effort to get up off the floor! No matter how bad he felt he usually got up on his feet when children came into the clinic. He was a very good baby sitter while the parents were receiving their treatments. He also had lots of personality. Patients would stop by the clinic just to see Jake. That doctor has pasted on so I do not see Jake any more. He lives with the doctor's son. Last I heard he was doing good.

Take care,

mzh · Post by **mzh** » Mon May 28, 2012 6:33 am

Hi Joe,

I didn't know that calcium in the facet joints was a main feature of AS; that's super-helpful to know for my 6/4 rheumy appointent.

Glad to hear the acu helps. That will be my next move when I feel very sore again.

Skritch your dog for me. My 3 greyhounds can use some too.

jmayk8 · Post by **jmayk8** » Mon May 28, 2012 7:09 am

Joe and Nancy,
No ideas on my end but, I think we should def make a plan!

Joefnh · Post by **Joefnh** » Mon May 28, 2012 8:18 am

We could just simply meet up at a restaurant of choice or find an outdoor venue...Nancy, Jenny any suggestions? I'm down in Bedford everyday, Jenny I believe your somewhere just north of Boston and Nancy is in the Leominster area....so somewhere in the middle?

jmayk8 · Post by **jmayk8** » Mon May 28, 2012 8:42 am

I'm in Reading, it's about 15 min north of Boston...Whatever works for you guys!
Happy Memorial Day!

Joefnh · Post by **Joefnh** » Mon May 28, 2012 10:39 am

Ok that's pretty close Jenny, I guess we will wait until a Nancy weighs in on any ideas or preferences.

nancyl · Post by **nancyl** » Mon May 28, 2012 1:52 pm

Joe & Jenny,
I am not sure where we could meet, but was thinking of the seafood place in Ipspich that Jenny mentioned earlier. I forgot the name of it. (Woodman's??) I'm not sure how far that would be for the two of you, but think it's furthest for us. That's not a problem as we are not working. We could meet after you both get out of work for dinner. Or, is there a Joe's American Bar and Grill that we could all meet at? We know that is a safe place to eat. Jenny are you far from Nashua? There is one at the Pheasant Lane Mall.

We're open to any other suggestions.

Nancy

jmayk8 · Post by **jmayk8** » Mon May 28, 2012 2:34 pm

There is a Joe's in Woburn. Also, all Burton's Grill restaurants are VERY accommodating for food allergies. They have a huge GF menu and are very knowledgeable on what is df and sf as well. There are a few Burton's in the area...Burlington, Peabody, N Andover and Nashua.

Joefnh · Post by **Joefnh** » Mon May 28, 2012 3:43 pm

As I commute up and down route 3, Burton's, Joe's or seafood is fine. I like Joe's that Nancy introduced me to and I like seafood...so Nancy since you probably have the farthest to go how about you and Jenny pick the place and time...my schedule is pretty open and flexible.

I'll PM you both my cell phone number

Deanna in CO · Post by **Deanna in CO** » Mon May 28, 2012 3:53 pm

OK, you guys, now you're making me jealous! Kari and I might have to schedule something in the Denver area, just on general principles! ;-)

Deanna