Opthamologist appt.

[CathyMaine]

Just wanted folks to know I just had my eye appt. She diagnosed me with Blepharitis and wants to get the inflammation under control before she looks @ a possible prescription for glasses. She called in a steroid ointment and eye drops (I apologize but I didn't write the specific med. down) and I'm to follow up in 10 days. She did say the ointment/drops work very quickly. She also noted that she frequently sees folks with MC have eye problems, especially if they are having a flare up.

Also...she questioned whether I was seeing a rheumatoid specialist, given the autoimmune nature of my diagnosis. Has anyone here seen an RA specialist? And if so, was it helpful?
Part of me hates to add another specialist to the mix of my PCP,GI, and opthamologist but would be willing to try if it was at all helpful.

[tex]

Also...she questioned whether I was seeing a rheumatoid specialist, given the autoimmune nature of my diagnosis. Has anyone here seen an RA specialist? And if so, was it helpful?

Yes, a number of members have done that, and some of them have been diagnosed and treated. The problem with that, though, is that the arthritis is caused by gluten-sensitivity and mast cell issues, (and in some cases, casein-sensitivity). Consequently, most of us have found that after we get our MC symptoms under control, our arthritis symptoms fade away. At one time, about 10 years ago, my knees were so bad, that sometimes I had to use 2 canes, on the really bad days. Some of my fingers were inflammed, and were growing crooked and twisted, etc. After I adopted the diet, and my gut began to heal, all those symptoms went away. I've still got those canes, as souvenirs, but I've never used them, since. Connie apparently had a similar experience, and here's what she posted in a response to another new member, yesterday:

Welcome to the club, Phil. If you are anything like many of us here who had "arthritis", the "arthritis" goes away once your body is clear of the toxins of gluten. I was seeing the head of Rheumatology at Oregon Health Sciences University, Dr. Atul Deodhar, (I hope you see this in a google search, Dr. D) for years before my dx/w/MC because I was in constant pain. He wrote on my chart, after I refused to take methotrexate or sulfasalazine to "suppress my immune system" (his ONLY answer to my pain) that I refused to take medication and would be disabled within 5 years - that was 9 years ago. I also refused Entocort after much research, although I know it's been successfully used by many here, I am just afraid of drugs and treated my MC w/o any prescription meds by eliminating gluten and using OTC meds.

Wean yourself off Celebrex and take tylenol as long as you need it. I have a 24 year old business that has physical aspects to it that a 25 year old would be intimidated by. I'm 63 now, strong as a horse and all my body pain is GONE. I will be GF for 3 years as of 8/1/12. I have 2 sisters who walk with canes, that's canes plural - they won't be tested or change their diet, they don't have diarrhea - so maybe we should be thankful that diarrhea appeared and had to be dealt with, so we actually found out what really was making us sick. As a double DQB1, I'm one of the lucky ones, gluten appears to be my only intolerance - maybe tapioca too - but I used to be dairy intolerant and I can eat ice cream now and used to react immediately. Go slowly, Phil, be your own doctor.

Connie

As bad as my symptoms were, I never went to see a doctor about them, let alone a rheumatologist, because I knew that he or she would diagnose me, and like Connie, I wasn't the least bit interested in taking the powerful drugs that I knew would be prescribed. I have a high school classmate who is now wheelchair-bound, who refused to take my advice to try the GF diet. She was taking methotrexate at the time, but after that stopped working, she went on to the anti-TNF drugs. She trusted her doctor, and she stuck with him, as she continued to deteriorate, and now, of course, even the most powerful drugs don't help, and she's accumulated so much damage by now, that she probably wouldn't be able to recover at this point, even if she adopted the diet.

Please don't allow yourself to fall into that trap.

Tex

[Lesley]

I also have blepheritis. I've had it on and off for years. Most uncomfortable.
Did she tell you to get some baby shampoo and wash your eyelids and lashes with it? That is the most important part. The ointment and eye drops don't help if you don't do this.

[maestraz]

Hi Cathy,
Yes, I saw a rheumatologist for a little while. But, most of my aches and pains resolved after going off of gluten (even without the NSAIDS I had been taking) so I haven't been to see her recently. I had a comprehensive auto-immune work-up, which turned up nothing. This doc knew I was GF/DF and did not accept or deny the role of diet, but also did not push meds on me.

[brandy]

Hi Cathy,

No I didn't see a rheumatologist when the joint pain hit. Honestly I didn't know what a rheumatologist was when the severe joint pain hit and my GI doc told me that joint pain did not exist with CC. I fired him at that point. At this point I think I was kind of too burnt out with seeing doctors and too sick to see a doctor. I read a lot of posts from Sara----we miss you Sara---that talked about the joint pain, the dizziness and fatigue, the brain fog, and the walking at the 30 degree angle being common with MC. I had all of this. As my gut healed all of this stuff went away. I had 15 years of preexisting joint pain in fingers, arms and wrists that I thought was due to "aging." Then I got on Entocort and was hit with unbelievable joint pain...my shoulders...my back...my legs.....pretty much all over my body. It must be common that when you get on Entocort you can get slammed with the unbelievable joint pain for I"m guessing what was for me around 4 weeks. I went from being an extremely active 50 yr old who walked 10 miles/week to not being able to walk around the grocery store or carry my groceries into the house.
After about 4 weeks the extreme joint pain was gone. After being GF for 3 months my preexisting joint pain of 15 years in fingers, arms and wrists was gone. I'm guessing in a month or less the extreme joint pain that you can get while on Ento should pretty much be gone. I believe another gal, Belle posted about this recently, she is on Ento and I believe hers was gone in around 3 weeks. She kept posting about it then finally said "it's better."

So now I have zero joint pain and feel like I'm 35.

Hope this helps, Brandy

[DebE13]

I had a consultation with one and was told I had chronic pain syndrome, fibromyalgia, needed more sleep and excerise, and have dry eye. It was a very disappointing and frustrating appointment to find out nothing was wrong since I knew all my complaints are related to MC. But I guess it's good to rule out other possible issues. BTW, I declined the offer to take more RX to treat these problems.

I'm still struggling with many of the complaints: eye pain & burning, fatigue,itchiness, knee & leg pain etc. However, I am noticing some improvements but it's a VERY slow process in my case but I'm sticking with the entocort and diet changes for now.

[CathyMaine]

Thanks so much for everyones responses! I am thinking that I'll just stick with my GF/DF diet, taper down the Entorcort and hopefully my eye issues will resolve with the steroid ointment. I was thrilled that the opthamologist acknowledged and verified that my eye problems were related to my MC. It's all related, as far as I'm concerned!
Lesley-the doctor gave me some OCUSOFT-which are pads with cleanser on them and I'm going to stick with those. I have cleaned my eyes 3x and they feel so much better, even though I haven't started the ointment yet. Do you have glasses Lesley? I will likely need glasses for reading.
Brandy-I'm so glad that you feel better!! There is hope for me. I was having major wrist joint pain and that has hugely decreased since I started the Entocort 9 weeks ago.
Thanks again all!