I was diagnosed with Celiac via biopsy in March with significant damage.
I have been gluten free for 9 months. I have gone to many doctors(gastro, rhumatologist, opthomologist, etc.), including the well known Dr. Peter Green at Columbia.
No one seems to be able to help me with my severe sore eyes and sore burning painful feeling in my neck and upper back. I do not get diarrea, but still frequently get gas and bloating.
I don't know what to do except stop eating gluten and taking prescription pancreatic enzymes. I have read a lot of books about "leaky gut syndrome" and am thinking that this may be the only logical explanation for what is wrong with me at this point.
Is there anyone out there with a similar situation or knowledge of what I can do?
Your dry eyes and back/neck pain could be fibromyalgia, I have it and it is flaring up real bad right now. I had hoped that is was all tied into the gluten thing, but so far that isn't the case. I have been gluten-free and casein free since August so it should have had some effect on that if it is going to. As to your gas/bloating, you should check to see if you are intolerant to cow's milk, I am and that problem was settled by avoiding casein. I was diagnosed through Enterolab for gluten and casein. Best of luck to you. Barbara
I thought I might have Fibromyalgia too - But I went to two rhumatolgists (one in CT and one at Columbia recommended by Dr. Green) - Both told me I do NOT have fibromyalgia. What was very frustrating to me was that they did not offer any logical explanation as to what I did have and what I should do about it.
I also went to a optomologist - I have been puting antibiotic ointment in my eyes for 3 months with no relief. I also had tear duct plugs put in, tryed restasys drops and use artificial tears. Apparently the Schirmer Test I took showed I had very low tear production. Again no logical explanation as to why this happened and no relief from doctors.
I also go to a Chiropracter, got to a gym for personal training and go for massages. Temporary relief at best.
Was diagnosed by a rhumatologist for fibromyalgia, had all the symptoms. I am in a real bad flare right now and am wondering if ithe darn stuff is seasonal. Had hoped that going gluten-free would cure, NOT. It seems to be located only from my shoulders to my fingers at this point.....hurts a lot. They don't know a really lot about it and it is a dumping station for doctors, just like IBS it. Barbara
MY eyes are affected also, it seems. I was thinking they get bad now when maybe flour is in the air. They burn so bad, actually a sore feeling, and I look like I havent slept in a week.
Curious why do you take the pancreatic enzyme? I take creon, I have chronic pancreatitis......... Maybe that is causing the eye problem?
I dont have any problems with yall are going thru but as far as the flour in the air, almost all of the grains we are not alowed to have are winter harvests. so farmers are problably starting to harvest or the grains are almost ready. my family lives on a farm and all around them the farmers are growing wheat and all kinds of other grains. everytime i go down to visit i get upset stomach and the works. i know its not the food bc both my parents have celiac disease as well. just a thought
you're right christi--it is in the air--i live in the country and farms can be a big problem--not only with wheat, but for me it's the dust, the mold when it rains, i live in a low area, near a river--when they are baling hay and straw--ewwwwwwwww--many of us older celiacs remember the show, "Green Acres" well, country living is no longer the life for me--i cant wait to get to new york--hehe--deb
Deb Long Island, NY
Double DQ1, subtype 6
We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!
About flour in the air...one of my most frequented coffee shops is part of a major bakery (the front is a coffee shop/bakery, the back is where all the baking takes place for this store and two restaurants.) Every time I go in the place, a day or so later I get sores in my nose. No other reactions, but these are painful and annoying. (Yes, I've given up going in. ) I can't imagine how being out where this stuff is in the air everywhere must feel. Yuck.
Re: Dry eyes...(I'm trying to figure out how to use this message board)...It might be helpful to know that dry eyes are associated with low thyroid levels. I do have low thyroid, which is often paired with celiac (yep, got that too)...and an astute opthomologist once told me that the low thyroid was causing dry, redness in my eyes. I doubt that this is the answer for everyone, but it would be worth considering if it seems to fit into anyone's picture. Also, note that the muscle spasms and aches can come from magnesium deficiencies...for which a magnesium drip,at one period, (pre-celiac diag.) helped me stabalize that.