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

University Celiac Clinics

JamiD

By JamiD
in Doctors

Recommended Posts

JamiD Apprentice
JamiD
Posted

Can anyone share an experience with a dedicated Celiac Clinic ie Stanford, Mayo, Columbia?

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

Celiac.com Sponsor (A8-M):


Murph Newbie
Murph
Posted

My experience w/ an alleged Celiac expert at Stanford was horrible. Was probably 3 yrs ago and still makes my blood boil if I think about it too much. (So I won't write much)

It became obvious he was far more interested in getting another research subject than in actually helping me.

JamiD Apprentice
JamiD
Posted
  • Author

Well, I've got an appt at Stanford in Aug. I'm discouraged by Murph's experience, but I can't afford the tests from a Naturopath right now and my insurance will cover a visit to the Stanford clinic.

In the meantime, I will remain on a lectin-free diet.

  • 3 weeks later...
The Lovebug Rookie
The Lovebug
Posted

I saw Dr. Allesio (sp?) at the University of Maryland Celiac Clinic and had a favorable experience although I really just wanted to know whether I should be tested. I've been on the gluten-free diet for about 5 years and, aside from an occasional "glutening" by someone else, I've had a good response. Before that I was extremely sick for about 6 years and had occasional bouts for many years before that. I also had questions about whether my children should be tested (now that they are starting to have children of their own). Although Dr. A. had an intern see me initially (and we spent 30-or so minutes together), he was pretty quickly in and out of the room. But it felt wonderful to be with someone who was SO knowledgeable about celiac, had great humor and warmth, had a very pragmatic approach and left the door open (so to speak) to further visits, questions, etc.

It was worth the hassle of traveling so far and waiting so long . . .

Sue

whitney728 Newbie
whitney728
Posted

I've been seeing Dr. Green at Columbia-Presbyterian's celiac center for about two years, and I'd say I've had a fairly positive experience. My only complaint is that it's difficult to get him to call you back (if you need test results explained or something like that.)

par18 Apprentice
par18
Posted
I saw Dr. Allesio (sp?) at the University of Maryland Celiac Clinic and had a favorable experience although I really just wanted to know whether I should be tested. I've been on the gluten-free diet for about 5 years and, aside from an occasional "glutening" by someone else, I've had a good response. Before that I was extremely sick for about 6 years and had occasional bouts for many years before that. I also had questions about whether my children should be tested (now that they are starting to have children of their own). Although Dr. A. had an intern see me initially (and we spent 30-or so minutes together), he was pretty quickly in and out of the room. But it felt wonderful to be with someone who was SO knowledgeable about celiac, had great humor and warmth, had a very pragmatic approach and left the door open (so to speak) to further visits, questions, etc.

It was worth the hassle of traveling so far and waiting so long . . .

Sue

Hi Sue,

I just read your post this morning. I met Dr. Alessio Fasano last summer during a talk he gave at the University of Virginia. His talk and his personality were very impressive. What I think a lot of people don't realize is how busy a person he is. The fact that you got to see him at all is impressive. The thing that I have found since my diagnosis over two years ago is how much you or I or anyone else can learn about Celiac if they just try. Those of us with Celiac are the real experts. The average family doctor can become a so-called "expert if they just try a little. The main problem is that there is no money to be made treating this condition after the diagnosis. There is no incentive for any doctor to spend a whole lot of time talking to any of us.

The fact that you have Celiac and children is a genuine concern. That said you know that the only treatment for them is the same as you and that is the gluten-free diet. You don't need Dr. Fasano or any other doctor to tell you that. Convincing your children or anyone else to try the diet on the onset of symptoms is the hard part. Most people are scared to death of having to change their lifestyle. They will be willing to spend a lot of money on the front end trying to eliminate everything else before finally settling on the same diet as you. You think it would be the other way around. I have family members who probably won't do anything unless they develop symptoms. There is nothing wrong with that if the first thing they do is see if the diet helps them. Trying the diet is free. This makes the most sense however human nature generally dictates the other course (expensive testing) first. If it were me and I wanted to test for anything the first thing would be to see if they had either of the two genes (DQ2 or DQ8). If they have neither then that would not completely eliminate their chances but would put them in a low-risk catagory.

Sorry about the length of this reply but I hope this helps.

Tom

FinsUp Rookie
FinsUp
Posted

My son sees Dr. Guandalini at the University of Chicago. We have nothing but great things to say about him and his staff. Every visit (including his endoscopy) have been positive experiences.

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

Celiac.com Sponsor (A8-M):


  • 4 weeks later...
jlp Newbie
jlp
Posted
My experience w/ an alleged Celiac expert at Stanford was horrible. Was probably 3 yrs ago and still makes my blood boil if I think about it too much. (So I won't write much)

It became obvious he was far more interested in getting another research subject than in actually helping me.

Yikes. I'm sorry to hear that, especially since all my searches for Celiac experts in the Bay Area have led me to Stanford, so far. Are there any MDs in the Bay Area that you would recommend?

GFhopeful Rookie
GFhopeful
Posted

there is a recent thread on the Mayo Celiac Clinic if you look under "Doctor's". Those who went were pretty positive about it in general and Dr. Murray especially.

JamiD Apprentice
JamiD
Posted
  • Author

My appt at Stanford is on Aug 6th. I'll post about my experience.

jacqui Apprentice
jacqui
Posted
My appt at Stanford is on Aug 6th. I'll post about my experience.

Hi I saw Dr. Gray and Dr. Pyle. My experience was positive, but I am also in the medical field so I was hoping he would use me as a subject. No word yet though... Although he did talk about me without names at one of his guest talks in Sac. Well, a friend quoted him and it was exactly what he had said to me.

I felt it was a very good experience especially compared to many people on the forum whose doc's would not order the blood work for them. My firt appt. was with Dr. Gray who just diagnosis you and then has you follow up with Dr. Gayle Pyle who rechecks me every so often. Dr Gray day one ordered complete Celiac panel including HLA DQ testing, vit. deficiency...(long story but I was already diagnosed by my ------ GI after I had an ER visit. He told me and it's in path report ...sorta looks like what is seen in celiac disease. Kid you not and then he told me to buy the book "The gluten-free Bible" and see a RD!! That is it!!!) Dr. Gray ordered my actual slides and read them himself. He said my vili were 3+ and 4 is worst per him. They give you their cards to email them with any questions but I never heard back from either. I called and I was able to speak to Dr. Pyle.

The negative is I have lots of neuro issues and per my friend who went to the Sac meeting he knew very little about neuro stuff, which is what I expected b/c at my 1st appt. he did not acknowledge my neuro complaints. THEN I saw Dr. Pyle and brought up my neuro and she said she is a GI and cannot comment on neuro but that she has pt's with neuro symptoms and they seem to be having success through the Mayo clinic.

I have been to 5 neuro's and not one had an answer. One in Sac, Davis, Stanford - the 2nd worst, and the last 2 guys from UCSF!!! #5 said "You'll get better." That'e it!!!! So another doc who thinks neuro symptoms and celiac disease don't exist thus diagnosis pt. must be NUTS!!

I hope all goes well!

Take care,

Jacqui

  • 2 weeks later...
JamiD Apprentice
JamiD
Posted
  • Author

I saw Dr Gray yesterday.

Because my antibodies (positve IgA and EMA, but negative transglutinamase) and biopsy (negative) were done 6 mos post gluten restriction, he wanted me to do a gluten challenge and re do the biopsy. Well, being in the middle of a divorce and going back to work, I just can't fit that in.

He did order the gene tests, but said that even if they were positive, it wasn't a definitive diagnosis. And his focus is on getting a confirmed diagnosis.

My focus is on wellness and since everything lethal seems to have been ruled out, I'm sticking with what's working, that being my diet.

I'm disappointed that he couldn't help me connect the dots with diet and its effects on me, but with the help of this board, I'm chipping away at it myself.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.