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Celiac Doctor Near San Jose, California?


ConfusedNeuropathic

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ConfusedNeuropathic Rookie

Hi all,

SHORT VERSION:

I live in San Jose and am currently looking for a doctor to screen me for celiac disease. Can any of you folks recommend one that you've had a good experience with? I see a few listed in the doctor directory on this site but am unsure of what kinds of positive/negative experiences people have actually had with them. Please feel free to PM me or post here, I will drive anywhere in the Bay Area as needed.

LOOOOONG VERSION:

The extended version of my request is as follows. I'm a 30 year old male who has had all kinds of strange symptoms over the last few months. It started with some chest pains and tender calves in both legs, at that time a EKG did not turn up any abnormalities. Then I started seeing streaks of blood in my spit, and had a CT scan which detected sinusitis and a badly deviated septum. My doctor said the bloody spit was from postnasal drip irritating my throat. I took antibiotics (Avelox, Augmentin, and Biaxin XL) for a month, and the bloody spit stopped, but the sinusitis only partially cleared up.

After that, I started having painful bowel movements and bloody stools. I had an anoscopy which found an anal fissure and hemerrhoids, and the doctor told me I was constipated (first time for this for me) and suggested I take docusate sodium stool softeners. That seemed to help the bloody stools some, and the painful bowel movements have subsided.

Following that, I started feeling dizzy all the time and developed strange sensations in my feet/legs and hands/arms. The sensations alternate between burning/tingling and itching (without rash). My doctor tested me for vitamin D and vitamin B12 levels, and I was deficient in D and in the low range for B12, so I've been taking oral supplements of both for a while, to no noticeable effect. The neuropathic burning feelings have slowly become more frequent and widespread over the last month. I also saw a neurologist and had a brain and cervical spine MRI, neither of which revealed anything unusual (outside of some neck vertebrae degeneration which is more than expected for my age) that could explain the symptoms. I was tested for heavy metal toxicology and that came up with nothing.

CLIFF'S NOTES:

Today I'm still having the neuropathy (very bothersome) and have noticed some weight loss (I weighed about 140 pounds before everything started and lost about 8 pounds in the last few weeks). Bowel movements alternate between constipation and diarrhea, there isn't much middle ground. My doctor thinks I'm nuts and is chalking it all up to anxiety. He won't consider the possibility that it could be something else at all.

I only recall the neuropathy starting after the month-long course of antibiotics and can't help but wonder if there's a GI tie in -- perhaps the antibiotics did something to my GI tract that led to malabsorption of nutrients and also vitamin supplements? Anyway I'm clutching at straws here and want to at least explore the possibility of the root problem being gluten intolerance. So any help in recommending a doctor who will at least screen me without thinking I'm insane would be much appreciated!

  • 2 weeks later...

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jacqui Apprentice

I saw Gary Gray at the Stanford Celiac management clinic. He does all lab work including gene testing day one/first appointment. The clinic was only on Mondays in AM I think. At least he diagnosed and then I went to local docs. I was pleased with him but others weren't. I needed diagnosis because up in Sacramento doctors were and are still oblivious!

SHORT VERSION:

I live in San Jose and am currently looking for a doctor to screen me for celiac disease. Can any of you folks recommend one that you've had a good experience with? I see a few listed in the doctor directory on this site but am unsure of what kinds of positive/negative experiences people have actually had with them. Please feel free to PM me or post here, I will drive anywhere in the Bay Area as needed.

LOOOOONG VERSION:

The extended version of my request is as follows. I'm a 30 year old male who has had all kinds of strange symptoms over the last few months. It started with some chest pains and tender calves in both legs, at that time a EKG did not turn up any abnormalities. Then I started seeing streaks of blood in my spit, and had a CT scan which detected sinusitis and a badly deviated septum. My doctor said the bloody spit was from postnasal drip irritating my throat. I took antibiotics (Avelox, Augmentin, and Biaxin XL) for a month, and the bloody spit stopped, but the sinusitis only partially cleared up.

After that, I started having painful bowel movements and bloody stools. I had an anoscopy which found an anal fissure and hemerrhoids, and the doctor told me I was constipated (first time for this for me) and suggested I take docusate sodium stool softeners. That seemed to help the bloody stools some, and the painful bowel movements have subsided.

Following that, I started feeling dizzy all the time and developed strange sensations in my feet/legs and hands/arms. The sensations alternate between burning/tingling and itching (without rash). My doctor tested me for vitamin D and vitamin B12 levels, and I was deficient in D and in the low range for B12, so I've been taking oral supplements of both for a while, to no noticeable effect. The neuropathic burning feelings have slowly become more frequent and widespread over the last month. I also saw a neurologist and had a brain and cervical spine MRI, neither of which revealed anything unusual (outside of some neck vertebrae degeneration which is more than expected for my age) that could explain the symptoms. I was tested for heavy metal toxicology and that came up with nothing.

CLIFF'S NOTES:

Today I'm still having the neuropathy (very bothersome) and have noticed some weight loss (I weighed about 140 pounds before everything started and lost about 8 pounds in the last few weeks). Bowel movements alternate between constipation and diarrhea, there isn't much middle ground. My doctor thinks I'm nuts and is chalking it all up to anxiety. He won't consider the possibility that it could be something else at all.

I only recall the neuropathy starting after the month-long course of antibiotics and can't help but wonder if there's a GI tie in -- perhaps the antibiotics did something to my GI tract that led to malabsorption of nutrients and also vitamin supplements? Anyway I'm clutching at straws here and want to at least explore the possibility of the root problem being gluten intolerance. So any help in recommending a doctor who will at least screen me without thinking I'm insane would be much appreciated!

  • 4 weeks later...
NerdGirl Newbie

I was wondering if you were able to find a doctor. I don't have a specific recommendation, but I wanted to let you know that I went through a lot of the same stuff that you did. I was desperate and went on the gluten free diet before being tested, with amazing results.

I wish that I would have been officially diagnosed, but there is no way that I will go back on gluten now. It is like night and day for me. Don't lose hope.

Angela S Newbie

You should try Health Now Medical Clinic in Sunnyvale. They have an informative website and your initial consultation is free. I don't have celiac but they diagnosed a gluten sensitivity as well as a stomach parasite.

Hi all,

SHORT VERSION:

I live in San Jose and am currently looking for a doctor to screen me for celiac disease. Can any of you folks recommend one that you've had a good experience with? I see a few listed in the doctor directory on this site but am unsure of what kinds of positive/negative experiences people have actually had with them. Please feel free to PM me or post here, I will drive anywhere in the Bay Area as needed.

LOOOOONG VERSION:

The extended version of my request is as follows. I'm a 30 year old male who has had all kinds of strange symptoms over the last few months. It started with some chest pains and tender calves in both legs, at that time a EKG did not turn up any abnormalities. Then I started seeing streaks of blood in my spit, and had a CT scan which detected sinusitis and a badly deviated septum. My doctor said the bloody spit was from postnasal drip irritating my throat. I took antibiotics (Avelox, Augmentin, and Biaxin XL) for a month, and the bloody spit stopped, but the sinusitis only partially cleared up.

After that, I started having painful bowel movements and bloody stools. I had an anoscopy which found an anal fissure and hemerrhoids, and the doctor told me I was constipated (first time for this for me) and suggested I take docusate sodium stool softeners. That seemed to help the bloody stools some, and the painful bowel movements have subsided.

Following that, I started feeling dizzy all the time and developed strange sensations in my feet/legs and hands/arms. The sensations alternate between burning/tingling and itching (without rash). My doctor tested me for vitamin D and vitamin B12 levels, and I was deficient in D and in the low range for B12, so I've been taking oral supplements of both for a while, to no noticeable effect. The neuropathic burning feelings have slowly become more frequent and widespread over the last month. I also saw a neurologist and had a brain and cervical spine MRI, neither of which revealed anything unusual (outside of some neck vertebrae degeneration which is more than expected for my age) that could explain the symptoms. I was tested for heavy metal toxicology and that came up with nothing.

CLIFF'S NOTES:

Today I'm still having the neuropathy (very bothersome) and have noticed some weight loss (I weighed about 140 pounds before everything started and lost about 8 pounds in the last few weeks). Bowel movements alternate between constipation and diarrhea, there isn't much middle ground. My doctor thinks I'm nuts and is chalking it all up to anxiety. He won't consider the possibility that it could be something else at all.

I only recall the neuropathy starting after the month-long course of antibiotics and can't help but wonder if there's a GI tie in -- perhaps the antibiotics did something to my GI tract that led to malabsorption of nutrients and also vitamin supplements? Anyway I'm clutching at straws here and want to at least explore the possibility of the root problem being gluten intolerance. So any help in recommending a doctor who will at least screen me without thinking I'm insane would be much appreciated!

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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