[Lynayah]

Does anyone here have experience with the University of Chicago Celiac Center physicians for adults? I have an appointment with Dr. Semrad in August and would love to hear from other who have used her or the Center. Thank you!

Lyn

[mom26boys]

I haven't been, but I would love to hear how your appt. went, if you wouldn't mind

[Lynayah]

mom26boys, on Aug 30 2009, 06:18 PM, said:

I haven't been, but I would love to hear how your appt. went, if you wouldn't mind

How nice of you to ask!

I'm still waiting on the results -- I should have them maybe as soon as tomorrow, and I'll let you know.

Much appreciated,
Lee

[Lynayah]

mom26boys, on Aug 30 2009, 06:18 PM, said:

I haven't been, but I would love to hear how your appt. went, if you wouldn't mind

Hi, mom26boys:

I have my results and am writing as promised. My Gliadin IgG is very high and I definitely have gluten sensitivity, or intolorance -- whichever you wish to call it.

My biopsy and gene test came back okay, so it is not Celiac.

So, while I an highly sensitive to gluten and still plan on eating gluten-free, I do not have an auto-immune disorder.

Thank you so much for caring!

Warmest regards,
Lyn

[Ivy]

Lynayah, on Sep 17 2009, 06:21 PM, said:

Hi, mom26boys:

I have my results and am writing as promised. My Gliadin IgG is very high and I definitely have gluten sensitivity, or intolorance -- whichever you wish to call it.

My biopsy and gene test came back okay, so it is not Celiac.

So, while I an highly sensitive to gluten and still plan on eating gluten-free, I do not have an auto-immune disorder.

Thank you so much for caring!

Warmest regards,
Lyn

Could you please tell me if they do any follow up and treatment, look at related disorders, or do they just diagnose? Thank you.

[Lynayah]

Ivy, on Oct 13 2009, 02:43 PM, said:

Could you please tell me if they do any follow up and treatment, look at related disorders, or do they just diagnose? Thank you.

They tested me for vitamin absorption and I believe they also did a CBC. I'm in the initial weeks of all this and have another appointment scheduled for November. I would guess that if they are going to look into other things, they would do so at that time.

I'll let you know.

[dalbi2]

Hello,

This is my first post. My 8-yr old daughter is being treated for Leaky Gut by Dr Hicks out of Delavan Wisconsin. Although I am happy with the results thus far, I am looking for an MD experienced in nutrition who also takes insurance and I think I hit the jackpot with University of Chicago Celiac Center. I have yet to schedule her for an appointment. However, I need to make an appointment for myself because I believe I need testing also. Lyn, could you please explain a little about the testing and if they insist on an endoscopy right off the bat?

Appreciate any info....

T

[Lynayah]

dalbi2, on Oct 20 2009, 07:01 PM, said:

Hello,

This is my first post. My 8-yr old daughter is being treated for Leaky Gut by Dr Hicks out of Delavan Wisconsin. Although I am happy with the results thus far, I am looking for an MD experienced in nutrition who also takes insurance and I think I hit the jackpot with University of Chicago Celiac Center. I have yet to schedule her for an appointment. However, I need to make an appointment for myself because I believe I need testing also. Lyn, could you please explain a little about the testing and if they insist on an endoscopy right off the bat?

Appreciate any info....

T

Let me begin by saying how very happy I am with the treatment I've received at U of C.

Testing: It all depends on the person. I had to do an 8-week gluten challenge first, which left me highly symptomatic. After the challenge, they ordered blood work right away and, if memory serves, they went ahead and scheduled the endoscopy in case the blood work showed that an endoscopy was indicated -- frankly, I don't remember for sure if they scheduled it right away or shortly thereafter.

They are careful to test you in the best order for insurance coverage. As I understand it, not all insurance companies will pay for the endoscopy unless the blood work indicates it is necessary.

A quick word about the endoscopy: It was much, MUCH more comfortable and much easier than I expected it to be. Dr. Simrad did an excellent job.

I'd suggest beginning with an appointment for your daughter and then discussing your concerns with her doctor at U of C. If you use Dr. Stefano Guandalini, who has an excellent reputation, he will, I am sure, guide you as needed. He does not take adult patients, so you will need to use one of the adult specialists there. I am very happy with Dr. Simrad and would recommend her to anyone.

[Lynayah]

Ivy, on Oct 13 2009, 01:43 PM, said:

Could you please tell me if they do any follow up and treatment, look at related disorders, or do they just diagnose? Thank you.

Ivy, on Oct 13 2009, 01:43 PM, said:

Could you please tell me if they do any follow up and treatment, look at related disorders, or do they just diagnose? Thank you.

Hi, Ivy:

I had my appointment at U of C today and, as promised, am writing to let you know what happened.

Dr. Semrad ordered another Vit. D (and E) blood test, also more IGA - she asked for one that tests the entire spectrum -- I believe she called it an "older version". She also ordered another regular IGA, if I understood her correctly.

She also ordered another colonoscopy for me -- I had one with another doctor last year, and he wrote "non-specific inflammation" on the test results. She does not like not knowing what the problem might be, and she also wants to check for, I believe she called it "microscopic colitis."

In addition, she asked if I would kindly make myself available for research studies since my case is a bit out of the norm. Of course, I said I'd welcome it.

My colonoscopy is scheduled in January. I'll let you know!

I hope you are doing well. Thank you again for your interest.

Warm regards,
Lyn

[Lynayah]

I just received the results to my second Gliadin test, and I'm higher now that I was when after doing the gluten challenge! Oh, good grief.

My vitamin levels came back fine. Whooo-hooo! VERY happy about this.

For those who may have an interest, I've posted a thread asking about higher Gliadin levels here:

http://www.celiac.co...showtopic=64449

In the meantime, I wanted to post the update here, too. I am now also scheduled for blood work to check complete blood count, my kidney function, and my thyroid. I'll keep this thread updated when I get the results.

Colonoscopy still scheduled for January. Oh, fun, fun, fun! By the way, I don't think I mentioned this earlier, but in addition to the doctor questioning the lower GI thing, I also found small red streaks of blood in my stool (sorry to be blunt, but it was on the tissue as I wiped). It happened three times. I am not too worried, but I am glad that U of C is checking me again.

I continue to be very happy with the University of Chicago Celiac Center and would recommend it to anyone.

Thank you to all who have been viewing this thread -- I looked at the count today, and it blew me away! There are a lot of you out there. I pray the information is helpful to some of you, and I deeply appreciate knowing you are there.

Best wishes to all,
Lyn

[Lynayah]

Kidney and thyroid tests came back okay.

[Lynayah]

Lynayah, on 04 January 2010 - 10:27 AM, said:

Kidney and thyroid tests came back okay.

colonoscopy - 2 polyps despite being free of them last year. Both were the kind that can lead to cancer if not removed. I have a very "twisted" colon and my former doctor may have missed them in the folds -- not sure. Anyway, they're now removed. I will need to have another colonoscopy next year as a safety measure.

Everything else okay, including no colitis.

Side note: A twisted colon is no fun during a colonoscopy, but my test went smoothly this time. To make things easier for me, Dr. Semrad used a very thin scope -- the kind usually used on children. This made the colonoscopy MUCH MORE COMFORTABLE than when my former doctor did it. It was pretty easy this time around. Whew!

[Lynayah]

Update: I had another check-up last week. Vitamin levels are good. I'm still waiting on gliadin results and will post them when I know.

I asked about my DQ, and I am a double DQ6. I remember reading somewhere that those with double DQ6 are perhaps more prone to neuropathy, which has certainly been true with me. I treat my gluten-intolerance as seriously as celiac. I honestly believe that, with me, it's an auto-immune disorder that attacks my neurological system instead of my intestine. (This is me talking here and not my doctor.) Anyway, I hope U of C learns something from me that might help others with the same.

I continue to feel better by the day. It is amazing how much my mood has improved over time! I am calmer and have more peace of mind -- able to relax easier, which has really been delightful to experience.

It's still a battle, and some days are more challenging than others, but it gets easier all the time. Life is good.

For those of you out there just beginning your gluten-free journey, hang in there!

[Matisse]

Lynayah, on 25 June 2010 - 06:10 AM, said:

Update: I had another check-up last week. Vitamin levels are good. I'm still waiting on gliadin results and will post them when I know.

I asked about my DQ, and I am a double DQ6. I remember reading somewhere that those with double DQ6 are perhaps more prone to neuropathy, which has certainly been true with me. I treat my gluten-intolerance as seriously as celiac. I honestly believe that, with me, it's an auto-immune disorder that attacks my neurological system instead of my intestine. (This is me talking here and not my doctor.) Anyway, I hope U of C learns something from me that might help others with the same.

I continue to feel better by the day. It is amazing how much my mood has improved over time! I am calmer and have more peace of mind -- able to relax easier, which has really been delightful to experience.

It's still a battle, and some days are more challenging than others, but it gets easier all the time. Life is good.

For those of you out there just beginning your gluten-free journey, hang in there!

I am curious whether all the anti-gliadin tests you've tested positive with have been the older one your mentioned in one post. I wasn't sure if the doctor said she wanted to also test you with the older gliadin test, implying you first had the deamidated gliadin test. Also were you negative for the tTG?

I am asking because I've tested positive twice for the deamidated gliadin test and am DQ2 and DQ8 negative as you are. (First one came back 33.9; after almost 9 months of a gluten free diet, it came back at 13.4.) I've never been given the older gliadin test. I am negative for tTG. Also, how were you able to find out that you are a double DQ6? When I was tested at Lab Corp for the celiac genes they only reported I was not DQ2 or DQ8 positive, not what DQ I was. My understanding is that Enterolab can give that information but only on the beta portion, not the alpha, and of course I would have to pay the full cost of it. I'm getting curious as to which DQ(s) I am.

Thanks for posting your experiences so far.

[Lynayah]

Matisse, on 01 July 2010 - 08:47 PM, said:

I am curious whether all the anti-gliadin tests you've tested positive with have been the older one your mentioned in one post. I wasn't sure if the doctor said she wanted to also test you with the older gliadin test, implying you first had the deamidated gliadin test. Also were you negative for the tTG?

I am asking because I've tested positive twice for the deamidated gliadin test and am DQ2 and DQ8 negative as you are. (First one came back 33.9; after almost 9 months of a gluten free diet, it came back at 13.4.) I've never been given the older gliadin test. I am negative for tTG. Also, how were you able to find out that you are a double DQ6? When I was tested at Lab Corp for the celiac genes they only reported I was not DQ2 or DQ8 positive, not what DQ I was. My understanding is that Enterolab can give that information but only on the beta portion, not the alpha, and of course I would have to pay the full cost of it. I'm getting curious as to which DQ(s) I am.

Thanks for posting your experiences so far.

Darn, I remember the doctor talking to me about the older -vs- newer test -- I believe I've had both, but I am not sure. I remember there was one she used because, if I'm remembering this correctly, one is better if taking a look at gluten intolerance as opposed to celiac only . . . but I'll have to check on this. I have to call U of C in September for more bloodwork, and I can ask the nurse at that time.

Double DQ 6: If you've had your DQ tested, then you have which DQ you are in the results. Just call and ask.

tTG?? Does this refer to Tissue transglutaminase IgA? I was tested for IgA and IgG and only IgG was positive, indicating gluten intolerance but not celiac.

See below for more . . .