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Celiac Expert Gi Spoke At Support Group

floridanative

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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.

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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.

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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!!!!

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