Should I Go To The Nyc Celiac Place?

[plumbago]

Hello Everyone,

I am new to the forum.

Diagnosed with celiac disease in May of 2010. Antibody tests were high in March and April of this year. Since May, after a positive biopsy, I have been doing the very absolute best I can to go gluten-free, but I have had occasional instances of severe cramps. In late October, I had my first celiac comprehensive blood tests since being diagnosed. Here are the results:

Deamidated Gliadin Abs, IgA -- 11 ("normal")

Deamidated Gliadin Abs, IgG -- 31 ("abnormal" - moderate to strong positive)

t-Transglutaminase (tTG) IgA -- 5 ("abnormal") -- "weak positive"

t-Transglutaminase (tTG) IgG -- 5 ("normal")

Endomysial Antibody IgA -- Negative 157 ("normal")

Many questions. How is it that some results are "normal" and some are "abnormal?" I have no idea. I've done a bit of research on the internet but can not come up with anything conclusive as far as the answer to that question.

My Vit D is extremely low (18) so I've stepped that up to 50,000 weekly.

The physician who ordered the blood tests for me has not explained any of this to me. In fact he is the one who told me before drawing my blood "once your antibodies are high, they will always be high." I thought about that, and concluded he must be wrong because when I originally got tested for celiac disease (blood-tested), the physician who ordered those tests - a different doc - said "do not STOP eating gluten! because that could affect the results of your tests." So I didn't. I kept eating gluten. Long story short, as every one on here knows, gluten does affect blood tests and antibodies. October doc was incorrect.

Moving on, I sent the gastroenterologist who conducted my endoscopy the results of October's blood tests. His office assistant called me back in a rush and only said, your results mean that you are still ingesting gluten. End of story, no further conversation.

Now, my question is, is it worth it to book an appointment with the doctors in Columbia University in NYC? I've read bits and pieces about there being a good Celiac center there. I don't live there. Normally I live in DC, but I could swing it, if they take my insurance. I don't care if the appointment is months in advance, as long as it is worth it.

Any feedback would be most appreciated! I look forward to participating more.

--Plumbago

[GFinDC]

Hi Plumbago,

There is a celiac clinic at the University of Maryland in Baltimore. Dr Alessio Fassano is the head of that clinic and is well known in the celiac world. So you could go there as an alternative to NYC. There is also a nutritionist named Cheryl Harris in Alexandria who works with celiac patients.

I am not surprised your antibodies are still a little high though. Going gluten free is kind of like learning to ride a bicycle, most people take few tumbles and get some scratched knees along the way. Some of the common issues are eating processed foods (that may have cc), taking vitamin pills that may have gluten, drinking coffee, tea or other things that may have gluten, sharing a toaster with gluten eaters, sharing cooking pots or utensils with gluten eaters, kissing the gluten eaters and not making a yuck face, sharing peanut butter, or other condiments with gluten eaters, and some people even have trouble with shampoos and makeup that have gluten in them.

Gluten can hide lots of places and it is easiest to just stop giving it a chance to slip in. That means not eating processed foods for a while until you get the hang of things. And many people have problems with dairy at first too and need to stop it for a while.

Pet foods can have gluten also and should be checked.

[plumbago]

Thank you gluten-free in DC.

Do you think I can just google Cheryl Harris and find her?

Also, I suspect you're correct about just giving up processed food for a while. Lunch and dinner would be fine, but that's a lot of eggs to eat for breakfast! And I like meat, but I do get concerned about the fact that my meat eating has increased since going gluten-free.

Thanks again.