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jcc

Member Since 31 Mar 2004
Offline Last Active Jun 12 2009 08:12 AM
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Posts I've Made

In Topic: Zyrtec - Contains Gluten And Dairy/lactose

27 May 2009 - 06:27 AM

Hello all.

I called Zyrtec just now and they explained to me that their products contain gluten and milk (all of them)!

Does anyone know of a brand that does not contain gluten or lactose? I am going to call Claritin as well - but sheeeeesh. You would think that they would have maybe one formulation that didn't contain gluten or lactose.

It was funny because after he told me that it contained the things that I was allergic/intolerant too, he said "would you like me to send you any coupons or store locations where you can purchase Zyrtec?" Um NOOO!!


This is news to me! If true, you might want to relay the information you received to the keeper of this list:
http://www.glutenfreedrugs.com/

In Topic: Eating Gluten To Get Tested

27 May 2009 - 05:51 AM

In the end, one's response to the diet may be the best test of all.

For others reading along who may be considering a dietary trial, it really is best to do at least the blood testing before experimenting with diet.... if you think you will ever want to seek an official dx. Then no matter what the results... I always recommend a dietary trial... because far too many people have problems with gluten despite negative celiac disease testing. I have heard of others who feel their condition worsened with the challenge.

You could try ordering up the blood tests quickly, although antibodies can drop off rapidly. A positive would be meaningful, but a negative could be false. If you opt to do a gluten challenge, it should be for 4- 8 weeks. And, if the results are negative, they suggest continuing the challenge and retest at 6 months and a year.

So... if you've already seen improvement... and would return to a gluten free diet no matter what... is it worth the official proclamation? Only you can decide, but nobody needs a doctors prescription to make dietary changes.

The genetic testing... you could do... but be careful how you read the results. Most doctors will tell you that you can't have celiac disease without having one of the main HLA types (HLA DQ2 or HLA DQ8), and they usually only look for those two specific types. My family has HLA DQ1. I have known several biopsy proven celiacs with this type, but it is also associated with gluten sensitivity without villous atrophy. This type does seem to be more common in those with some neurological complications, like my daughter, but she also had classic diarrhea and skin problems.

Enterolab does not limit their testing to HLADQ2 or DQ8, so if you decide to go that route of genetic testing... I'd recommend doing the cheek swab through Enterolab. BUT... gluten sensitivity is possible in just about genetic type... so it may be an interesting thing to know... but may not tell you as much as you hope. Just don't let anyone tell you that you can't have celiac disease or gluten sensitivity without having HLA DQ2 or DQ8.

Here are some references for you... on how quickly blood antibodies fall and the duration of a gluten challenge. Hope this helps!
.

RESULTS: Twenty patients could be followed during GFD and all antibody titres fell sharply within 1 month after introduction of a GFD and continued to decline during the survey interval. Thirty days after beginning the diet only 58, 84, 74 and 53% of all patients had positive antibody levels of tTGrh, tTGgp, EmA and AGA respectively. CONCLUSIONS: As the antibodies used to confirm the diagnosis of celiac disease fall rapidly and continue to decline following the introduction of a GFD, it is important that health care providers carefully inquire about the possibility of self-prescribed diets before patients sought medical attention.

Antibody levels in adult patients with coeliac disease during gluten-free diet: a rapid initial decrease of clinical importance. PMID: 15554953


Are you scheduled for a biopsy? Are you eating gluten?
Any changes in your diet can affect the accuracy of your biopsy results. It is necessary for you to be eating gluten every day for at least 4-8 weeks before the procedure. If you are scheduled for a biopsy and are not eating gluten, talk to your doctor about what is necessary to obtain accurate results. If you have a biopsy and have eaten gluten only a short time before the test, you and your physician will not know if a negative test result is accurate or due to your diet.

http://www.uchospita.../uch_014187.pdf


Cara

In Topic: Looking For Celiac Dr. In Minneapolis Area

27 May 2009 - 05:31 AM

Hello:
I was recently diagnosed with Celiac, through a routine screening of family members. (My 6.5 year old was diagnosed two months ago.) My endo showed inflamed, flat lining with "no villi present". My internal medicine Doctor does not appear to understand Celiac, and I am concerned that I will not receive proper follow up care to ensure that I am responding to gluten-free. I am 44, and feel that I have had Celiac all of my life. I want to be assured that I do not have refractory sprue, etc. Does anyone know a good doctor in the twin cities that I can consult with for follow up care?

Thanks for any assistance you can provide.


Joseph Murray, M.D, is a reknown gastroenterologist at Mayo~
http://www.sflorg.co...n100906_02.html

I may have a recommendation for you by the end of the day for a primary care doctor who understands celiac disease. My DIL is in medical school at Mayo, and she shadowed a doctor in the area who has celiac disease herself. I'm just not sure if she was a primary care doctor or not. I'll let you know soon as I find out.

Cara

Well, the doctor is in Family Medicine but she is Rochester...Margaret Gill, MD
http://www.mayoclini...o/10854495.html

But, my DIL is going to ask around about someone in the cities. Are you looking for a primary care doc who "knows" celiac, or a gastroenterologist ?


Also, you may want to check with a local support group... celiacs recommending celiac doctors probably give the most trustworthy recommendations. I always get a little nervous about doctors recommending doctors....unless they really know them. I know Margaret Gill is very knowledgeable because my DIL talked with her and Dr. Gill has celiac disease, but unfortunately she's not in the cities.

Minneapolis/St. Paul Area Support Group
Contact 1: Carol Hansen
Northland Celiac Support Group (formerly Midwest Gluten Intolerance Group)
Tel: (651) 489-0645
E-mail: carolahansen@comcast.net
Contact 2: Barbara Wojcik
Tel: (651) 653-4523
E-mail: barbara1760@comcast.net
Internet: http://www.northlandceliacs.org

In Topic: Wisconsin Celiacs Unite!

26 May 2009 - 04:39 PM

Hello fellow Kenoshans and Wisconsinites!

I was born in Milwaukee, grew up in Greendale, attended UWM, and have resided in Kenosha for the last 20+ years.

I've been gluten free for eight years, along with my 13 year old daughter. I've been busy advocating about gluten sensitivity ever since we realized my daughter has gluten sensitivity. She doesn't have celiac disease, but had GI, skin, and neurological symptoms related to gluten. Try googling The Gluten File and it tells her story..can't post the link here.

I don't post here very often anymore, but I browse occasionally... and felt compelled to post on this Wisconsin thread! Anyway, I would be happy to help any of you who are new to this, especially those living in Kenosha.... so don't hesitate to contact me via email at this addy I've learned a lot over eight years ;).

For those in Kenosha looking for a support group... the Milwaukee Sprue Crew meets at the north side library every couple of months~ you can contact Bev Lieven. I attended a few meetings in the beginning, but just find online support groups easier! A local group can certainly help with best doctors, best places to shop, and have a more personal touch.

Here is a listing of WI CSA support groups... including Milwaukee's group.
http://www.csaceliac....php?stateid=50
And websites of two other WI groups:
East Central Wisconsin Gluten Free Group - http://ecwgfg.gfnavigator.org/
Wausau Celiac Support - http://www.celiacinw.../Home_Page.html

I also received this not long ago... looks like a group may be starting up in Racine as well.

Racine Celiacs…WFHC-All Saints Health Care is proud to announce a Celiac / Gluten-Free Support Group in the Racine area. The first meeting will be held on Saturday, April 19 from 3:00 -4:00 p.m at WFHC-All Saints St. Mary's Hospital on Spring Street--3800 block. Meeting will be held in the Racine Room, on the lower level by the cafeteria. Those affected by celiac disease / gluten free diet in Racine and the surrounding area are invited to attend. There is no charge. Contact Tricia Seidler FNP at (262) 687-5972 or Tricia.Seidler@wfhc.org if you would like to more information but are unable to attend this meeting.

This meeting is offered by WHFC-All Saints Health Care; supported by the National Foundation for Celiac Awareness and the Milwaukee Celiac-Sprue Crew. MCSC has ~50 present/past members in Racine County and All Saints is able to provide an regular meeting place. The location may prove convenient for those in SE Milwaukee County as well. There are lots of veteran/experienced celiacs in the area and also many newly diagnosed. This is an exciting opportunity and produce interesting results as area celiacs become involved.


I've shopped the Gluten Free Trading Company in Milwaukee on several occasions in the past (great place!), and Earthly Goods in Gurnee (not sure if it is still open)... but currently find everything I need at Woodman's in Kenosha. They have a very large gluten free section that just keeps growing!

Nice to meet you all!

Cara