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 Expert Gi Spoke At Support Group

floridanative

Recommended Posts

floridanative Community Regular
floridanative
Posted

The Dr. I saw is the leading Celiac expert in a major US city and she is noted in Wheat-Free, Worry-Free (Dana Korn) due to her expertise on the subject. Most of her time is spent educating doctors about Celiac so future patients won't have to endure what many of you have.

She spoke at my support group on Sat. and below is what I thought was important to share. The following information is from my own personal notes taken at the meeting and in no way should they be considered as the doctor's exact words. There was no pamplet handed out for reference. The doctor's name is not posted as I did not get her permission to do so.

The endoscopy/biopsy is still considered the 'gold standard' for a Celiac dx in the US but she feels that the blood tests will replace it as such in the next 6-12 months. She said the person doing the endoscopy should take 6 to 8 biopsy tissue samples (2-3 is the norm). With less than 6 samples the risk is great that you could get a negative result, but still have damaged villi and hence, Celiac disease.

You need to be followed by a doctor for check ups if you have Celiac disease. The standard for 'checking' to see how you're doing on the gluten-free diet is not, I repeat, is not the biopsy anymore. That should only be done if your blood work (Celiac panel) is not normal after 6 months (or so) on the diet. Only then is the biopsy needed IF that is you are looking only for evidence of Celiac damage. There are other health conditions which require the endoscopy of course.

For several reasons that I can't explain correctly, the doctor highly recommends to all her Celiac patients take a probiotic (I have seen this mentioned here before but didn't know what they were). She says basically this is a life long recommendation to treat overactive bacteria in the stomach which afflicts many Celiacs who eat more sugar on the gluten-free diet. I picked Culterelle up at CVS and a 1-month supply (30) cost me $20. Maybe someone with more knowledge about this can post more info about this condition.

She also recommends that Celiacs take a capsule multi-vitamin. She thinks liquids vitamins are great but since they don't taste good that most patients won't take them long term. The reason she likes the capsule multi-vitamins is that the capsule is easily digested but you get all the stuff inside without question. She says she sees too many undigested vitamins when doing colonoscopies (she can read the vitamin name) to tell patients to take the reg. hard multi-vitamins. I read in an unrelated book that if your vitamin disolves in less than 15 minutes in a glass of water you should be getting the benefits of it. So I'm investigating this matter further. I take Centrum and it dissolves fairly fast in water. I think vitamin level blood tests should indicate if they're working. The doctor specifically mentioned Pioneer brand mulit-viatmins and said they were at CVS but they weren't at mine.

It's very important to have your family members tested whether they have any symptoms of Celiac or not. The doctor noted Dr. Fessano's (Italian Celiac research specialist) work which shows something called the iceburg effect. His studies show that only 30% of patients with Celiac are exhibiting symptoms - that means that 70% are totally asymptomatic. 70%.....that is an astounding statistic to me! Roughly 3 million Americans have Celiac and 95-97% of them are walking around undx'd. *note I think that includes 500,00 gluten intolerant patients plus 2.5 million with Celiac.

One of the more interesting points the Dr. made was about Celiac and infertility. Something called idiopathic infertility I think was the term. Anyway, she feels that this is one area where some undiagnosed Celiacs spend a fortune on fertility treatments when for some of them, all they need is to follow a gluten free diet in order to get pregnant. Please note I said only that the Dr. said SOME infertility is caused by untreated Celiac disease. But the Dr. said it's rare for an infertility specialist to ever think of testing anyone for Celiac since they've probably never heard of it.

Regarding a gluten challenge, the Dr. says once someone is on the gluten-free diet, she never tells them to eat gluten again in order to do a biopsy and show damage again. This is a very outdated and incorrect way of

thinking/testing.

Things to consider when one has Celiac dissease: higher risk of osteoporosis, pancreatic problems, rheumatoid arthritis, and hypothyroidism (there are more things I'm sure but she mentioned these). She pointed out that one major rx drug for osteoperosis has gluten in it! She also noted Celiacs should have their adrenal glands checked as well as their B12.

For dieticians educated correctly about Celiac look for one that is D.I.G.I.D. certified. Good luck with that one as it's much easier said than done.

Regarding gene testing - first I'll note that it appeared to me that the Dr. thinks Dr. Kenneth Fine is doing some great work. She also said that 40% of all Americans have one of the two genes for Celiac but they do not all have Celiac obviously. 95% of Americans have the HLA DQ2 gene and 5% have the HLA DQ8. If someone has both genes, they for sure have Celiac. Someone can have only one gene and either have Celiac or not. But one could not have either gene and they could still have problems eating gluten - they are considered gluten intolerant.

Lactose intolerance is fairly common with blunted villi and patients with this can usually reintroduce lactose after their villi have healed. All Celiacs do not have this problem.

That is all the infomation I have to share. As stated above, this is not intended to be a transcprit of the meeting I attended. But sometimes you have to tell the doctors what you need them to do for you. I hope this information will help at least one person in need.

Note to anyone who likes Arby's - their corporate doctor on staff (forgot his exact title) attended the meeting. He mentioned that Arby's was working on providing accurate info as to what Celaics can eat at their restaurants.

Nini - please add anything that I forgot to mention. I'm sure there is a lot I didn't cover.

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Tiffany--That sounds like it was a great, informative meeting! Thanks for sharing :)

jenvan Collaborator
jenvan
Posted

Thanks for the info girl! Am printing it off to read...

Guest nini
Guest nini
Posted

Tiffany, I think you pretty much covered it! Good job taking notes. Oh, she also brought up the Celiac Panel for blood testing and said that if the tTg and the EMA are both positive, then it is 100% that you have Celiac... She said something about Dr.s should do a minimum of at least three of the tests on the complete Celiac Panel, those two and the total serum IgA, the AGA are also valuable too, but that the tTg, EMA and IgA are the MINIMUM tests that should be run.

She stressed the importance of having all first degree relatives of dx'ed celiacs screened because of the increased risk of having celiac.

Rusla Enthusiast
Rusla
Posted

Thanks for sharing this with us, it is very informative and interesting.

happygirl Collaborator
happygirl
Posted

Wow, great information. I am printing it off and passing it out. In fact, I think I should send it to the quack of a GI that did TWO endoscopies and never mentioned Celiac.

Thank you so much for sharing!

floridanative Community Regular
floridanative
Posted
  • Author

Thanks everyone and thanks to Nini for listing the Celiac panel blood tests the Dr. spoke of. I hope this info can help someone who is being given conflicting information as I was given by doctors who didn't know much if anything about Celiac disease.

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

Celiac.com Sponsor (A8-M):


codetalker Contributor
codetalker
Posted

Thanks for taking the time to share all this info. It was very informative.

mamaw Community Regular
mamaw
Posted

For liquid vitamins and minerals , there is a fairly good tasting one called MIRACLE 2000 , original flavor or cherry flavor....I buy it from the vitamin shoppe. For a good capsule packet of vits and mins The mountain house is a good one to use. They also have a good probiotic.

thanks for your fine note taking!!!!!

mamaw

floridanative Community Regular
floridanative
Posted
  • Author

Oh I just remembered something I forgot to say in the post above. Dana Korn is coming out with a new book entitled 'Gluten Free for Dummies' I think either this or next month. Nini please correct me if I got the title wrong.

Guest nini
Guest nini
Posted
Oh I just remembered something I forgot to say in the post above. Dana Korn is coming out with a new book entitled 'Gluten Free for Dummies' I think either this or next month. Nini please correct me if I got the title wrong.

oh that's right! she partnered up with the books for Dummies people and yep putting out a Gluten Free for Dummies book!

jerseyangel Proficient
jerseyangel
Posted
Gluten Free for Dummies book!

Sounds like that would be right up my alley :D

nettiebeads Apprentice
nettiebeads
Posted
oh that's right! she partnered up with the books for Dummies people and yep putting out a Gluten Free for Dummies book!

That's fantastic!

mandigirl1 Enthusiast
mandigirl1
Posted

floridanative,

thank you for reporting to us all that information. that was very nice of you. there was some helpful info.

I was just wondering if you could recommend a really good Celiac author/specialist/nutritionist/therapist in the NYC area. I am trying to find a therapist I can talk to about my food issues/problems. Its hard to find someone in NYC, given how many therapists there are!!!

Even if you dont know of any in NYC (because maybe you dont live there), do you have any other info that could put me the direction of getting help??? Thanks!!

Its nice to have so many great fellow Celiacs helping one another.

(Me personally, I love to help----Im a 4th grade teacher, who just today dropped off sandwiches at the local church, that helps feed the homeless. Felt so good doing this because there were so many leftover, untouched, sandwiches my students didnt eat.)

:)

lovegrov Collaborator
lovegrov
Posted

This sounds like Cynthia Rudert from Atlanta. She spoke at a GIG national conference I went to. I know she recommends probiotics to ALL of her celiac patients.

richard

Guest nini
Guest nini
Posted
This sounds like Cynthia Rudert from Atlanta. She spoke at a GIG national conference I went to. I know she recommends probiotics to ALL of her celiac patients.

richard

:D

TCA Contributor
TCA
Posted

Thanks so much for all the info!!! We're going through the testing in the family now and this helps tremendously!!!!

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
    2. JudyLou
      - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankle...
    3. marzian
      - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      This is very exciting news. The research lends itself to preventing the immune system in other autoimmune disorders from getting out of sorts. As someone with a compendium of autoimmune disorders I feel a bit of hope.
    4. Jmartes71
      - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week, in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with...
    5. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,139
    • Most Online (within 30 mins)
      7,748
    kathleen apodaca
    Newest Member
    kathleen apodaca
    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

    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      Airborne Gluten?

      By Jmartes71 · Posted

      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.