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Looking For A Celiac Doctor In Austin Or San Antonio Tx (And Feedback On My Symptoms)

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#1 spirit_walk

 
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Posted 21 December 2012 - 08:24 AM

Hello board,

I am looking for a GI doctor that specializes in Celiac's Disease. I'm not sure if this is the best place to ask or if anyone would have knowledge, but I thought I would try. I live in the South Austin area in Texas. I found a doctor named Dr. Luban in Austin, but he does not take my insurance (BCBS). Does anyone have any recommendations on doctors or know where I might find that information?

Just a little history on myself. I began having pain in my hands a few years ago and over the last year it became worse. This March my hands began to really hurt to the point that I couldn't turn door handles or lift a pot off the stove without significant pain. Lifting my 2 year old daughter was so pain that if felt like my wrists were going to break. What started in my hands and wrists has migrated to hips and knees and is now affecting my shoulders and jaw. My shoulders, jaw, and wrists pop all the time. I have never had any swelling of joints! I have completely cleaned up my diet in the last four-six months but have only been completely gluten-free about 3-4 months. I went from seeing my general practitioner, to an ortho for MRIs, to a nerve doctor, and am now on my second rheumatologist. I have a lot of bloodwork for inflammation and all came back negative for rheumatoid factor, CRP, CCP, Lupus screening, gout, and other tests. I've also had a bone scan of my entire body done, and results were negative for inflammation. My current rheumatoid doctor says I have some kind of inflammatory arthritis, but he can only verify this by feeling my joints even though there is no visible swelling. If you looked at me, you would not know I have any issues. He also ran blood test for celiac, and it came back negative (but I've read that you have to be eating gluten for this to be accurate).

But after leaving fast food, chocolate, junkfood, etc behind, I've lost about 27 pounds over the last six months. I'm too skinny (went from about 157 pounds to 130 pounds). I'm eating plenty, but I can't seem to get enough calories with fish, rice, beans, quinoa, chicken, etc.

Here's the reason I want to see a CELIAC doctor. I saw a nutritionist that ran a food allergy test on me. She said that I was "intolerant" to eggs, gluten, cow's milk, malt, yeast, barley, rye, wheat, carrot, pepper, cantaloupe, watermelon, lemon, grapes, peanuts, walnuts, cashews, sesame, tomato, pineapple, tuna, crab, asparagus, coffee, lobster, cheddar cheese, and yogurt. She told me that I needed to be on a rotation diet, which I didn't do for a few weeks because of the difficulty of just eating things not on my list.

She told me I most likely have "leaky gut." Well, after a couple of months, I'm wondering if I'm now intolerant to brown rice, chicken, dates, among other things b/c I ate them so often.

I know that when I eat certain foods, I have an immediate reaction within 20 minutes of eating. The reaction is that I can feel tingling in my hands and then I may have more joint pain afterwards. Sugar seems to be a real culprit to the symptoms.

So, I'm pretty sure (not certain) I have this leaky gut syndrome. I know I have something autoimmune going on due to the migration of joint pain in my body. I think I could have sero-negative RA, but my doctors keep telling me I don't have RA. The symptoms of joint popping in my shoulders and wrists don't seem to be consistent with other people that I know with RA. So, the next step for me is a gastroenterologist, but I don't want to just see any GI doctor. I want to see someone who deals or has a lot of knowledge on Celiac.

I would love to hear feedback with anyone who might have similar symptoms (joint pain, popping, etc). It is important to note that I DO NOT have any stomach or intestinal pain. Other than an occasional upset stomach (once or twice a year), I don't have stomach issues. But, as a child I seemed to have diarrhea a lot that went away when I was an adult.

Any advice would be greatly appreciated.
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#2 kerid

 
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Posted 21 December 2012 - 07:46 PM

Hello board,

I am looking for a GI doctor that specializes in Celiac's Disease. I'm not sure if this is the best place to ask or if anyone would have knowledge, but I thought I would try. I live in the South Austin area in Texas. I found a doctor named Dr. Luban in Austin, but he does not take my insurance (BCBS). Does anyone have any recommendations on doctors or know where I might find that information?

Just a little history on myself. I began having pain in my hands a few years ago and over the last year it became worse. This March my hands began to really hurt to the point that I couldn't turn door handles or lift a pot off the stove without significant pain. Lifting my 2 year old daughter was so pain that if felt like my wrists were going to break. What started in my hands and wrists has migrated to hips and knees and is now affecting my shoulders and jaw. My shoulders, jaw, and wrists pop all the time. I have never had any swelling of joints! I have completely cleaned up my diet in the last four-six months but have only been completely gluten-free about 3-4 months. I went from seeing my general practitioner, to an ortho for MRIs, to a nerve doctor, and am now on my second rheumatologist. I have a lot of bloodwork for inflammation and all came back negative for rheumatoid factor, CRP, CCP, Lupus screening, gout, and other tests. I've also had a bone scan of my entire body done, and results were negative for inflammation. My current rheumatoid doctor says I have some kind of inflammatory arthritis, but he can only verify this by feeling my joints even though there is no visible swelling. If you looked at me, you would not know I have any issues. He also ran blood test for celiac, and it came back negative (but I've read that you have to be eating gluten for this to be accurate).

But after leaving fast food, chocolate, junkfood, etc behind, I've lost about 27 pounds over the last six months. I'm too skinny (went from about 157 pounds to 130 pounds). I'm eating plenty, but I can't seem to get enough calories with fish, rice, beans, quinoa, chicken, etc.

Here's the reason I want to see a CELIAC doctor. I saw a nutritionist that ran a food allergy test on me. She said that I was "intolerant" to eggs, gluten, cow's milk, malt, yeast, barley, rye, wheat, carrot, pepper, cantaloupe, watermelon, lemon, grapes, peanuts, walnuts, cashews, sesame, tomato, pineapple, tuna, crab, asparagus, coffee, lobster, cheddar cheese, and yogurt. She told me that I needed to be on a rotation diet, which I didn't do for a few weeks because of the difficulty of just eating things not on my list.

She told me I most likely have "leaky gut." Well, after a couple of months, I'm wondering if I'm now intolerant to brown rice, chicken, dates, among other things b/c I ate them so often.

I know that when I eat certain foods, I have an immediate reaction within 20 minutes of eating. The reaction is that I can feel tingling in my hands and then I may have more joint pain afterwards. Sugar seems to be a real culprit to the symptoms.

So, I'm pretty sure (not certain) I have this leaky gut syndrome. I know I have something autoimmune going on due to the migration of joint pain in my body. I think I could have sero-negative RA, but my doctors keep telling me I don't have RA. The symptoms of joint popping in my shoulders and wrists don't seem to be consistent with other people that I know with RA. So, the next step for me is a gastroenterologist, but I don't want to just see any GI doctor. I want to see someone who deals or has a lot of knowledge on Celiac.

I would love to hear feedback with anyone who might have similar symptoms (joint pain, popping, etc). It is important to note that I DO NOT have any stomach or intestinal pain. Other than an occasional upset stomach (once or twice a year), I don't have stomach issues. But, as a child I seemed to have diarrhea a lot that went away when I was an adult.

Any advice would be greatly appreciated.


i really hope you find some answers. i think that if they found out it was celiac, it wouldn't be surprising, especially with the "diarrhea as a child" thing. and the autoimmune thing. celiac tends to run with AI stuff. good luck!
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#3 nvsmom

 
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Posted 22 December 2012 - 08:00 PM

Your joint pain sounds a LOT like mine. I creak and pop, rarely swell, and the pain moves after staying in one location for a few months... usually. It began in my early twenties and comes back every few months but some of the pains stick around now; for example, I haven't been able to lift my left arm over my head without pain for six months now.

When I went gluten-free, I was really hoping that the pain and fatigue would go, but they didn't. I then found out I have hypothyroidism (Hashimotos) which probably began back in my 20's but my doctors only went by the TSH test; my TSH was around a 5, which they said was normal so I was dismissed.

The pain and fatigue came back with a vengence shortly after starting thyroid hormones. I too had bloodwork for RA and Lupus (negative except for ANA) so at this point I'm hoping my arthritic like pain is associated with hypothyroidism and that the worsening of my symptoms was caused by my body adjusting to the hormones. It's not gone yet, but my meds aren't ideal yet so I'm trying to be patient. I suspect that I might have lupus, but it's taking half a year to a year to get in to a rheumatologist now, so I really don't know what it is... It could even be celiac realted since I've only been gluten-free for 6 months now.

Have you had your Thyroid checked? Free T4, Free T3, and TPO Ab are good tests to do in addition the TSH. Hashimoto's can cause pain. Lyme disease is another one that can cause pain and is easy to miss.

It is possible it is celiac for you. There are a good number of celiac who don't have stomach issues either. I met one man a while back whose only symptoms was sores in his throat (ouch) and headaches, so lack of GI symptoms doesn't rule it out. You are correct in that being gluten-free will cause blood tests to be negative. An upper GI endoscopy could show some damage still if you haven't been gluten-free for too long... I'm not sure if there is anything else that a GI specialist could do for you.

My advice would be to stay very strictly gluten-free for a a half year or so and see if it helps. Sometimes symptoms take a long time to go away, plus gluten exasperates the symptoms in many autoimmune disorders anyway so if it is something else, it won't hurt. I would also check into Hashimotos thyroiditis. If your thyroid is under an autoimmune attack, your metabolism could be swinging between fast and slow and causing symptoms like weight loss and pain... Perhaps google it and see if it fits with you.

Best wishes to you! I hope you figure it out soon... I know how chronic pain can wear you down after a few years.
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#4 spirit_walk

 
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Posted 30 December 2012 - 07:10 AM

Thank you for the response nvsmom. I have had my thyroid checked, and again results came back negative. I had my thyroid checked because my hands began to get very cold at work, and I've never experienced this before. My rheumatoid doctor originally told me that my testosterone was low but my thyroid came back okay. I then saw an endocrinologist, and all results were good. I still can't seem to put any weight back on, but my diet is much different than it was when I was putting down fast food, candy, and chips and dips daily. I'm hoping the clean diet is what has caused the weight loss. I've been strictly gluten-free for about 3.5 to 4 months. But because I have so many food restrictions (according to the nutritionalist I saw), it's difficult to get a lot of food in my diet without eating a lot of the same foods over and over. I'm really trying to stick with this food rotation diet, but it is not easy. Just hoping I don't become intolerant to more foods.
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