Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac Doctor Near San Jose, California?


ConfusedNeuropathic

Recommended Posts

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748

    Kathy N
    Newest Member
    Kathy N
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.