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cyclinglady

Member Since 31 Mar 2013
Offline Last Active Today, 07:15 AM
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#941460 My Mother Has Been Diagnosed With Celiac And Diverticulosis

Posted by on 04 March 2015 - 03:04 PM

Check out the University of Chicago's celiac website. It has some great information. And.....all first-degree relatives should get tested even withou symptoms (some of us have no symptoms at all). Get tested!
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#941420 Ucsb Student In Fall

Posted by on 03 March 2015 - 10:53 PM

Hey, there is an In N Out less than four miles away! We eat there safely! Tell them you have a gluten allergy.
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#941419 Ucsb Student In Fall

Posted by on 03 March 2015 - 10:35 PM

I think it is about as safe as you are going to get at a university. Are the baked goods certified and prepackaged? Where are the gluten-free toaster ovens kept? Is someone going to throw in gluten-containing toast in the gluten-free toaster oven to save time? Are they baking gluten-free baked goods in dedicated areas using gluten-free equipment?

Can you go in a tour?

Can you cook in the dorm shared kitchen? Then bring a bin of cooking stuff to stash in your room.

It irks me that the university requires you to purchase a meal plan, yet they can not guarantee a gluten-free meal fit for a person with celiac disease. Not sure that UC schools require this but CSU schools do. Search within this forum as this topic has come up in the past.

Hummm... I am going to research this myself!

But, I can say that we survived a Baltic Sea cruise and a two week trip to England. My husband travels for work. So, it can be done.

Let's see what others have to say.
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#941413 Is This Celiac?

Posted by on 03 March 2015 - 09:34 PM

Welcome!

Here is a link to Mary Shomon site regarding thyroid testing:

http://thyroid.about.../bloodtests.htm

These are the celiac tests:


-tTG IgA and tTG IgG
-DGP IgA and DGP IgG
-EMA IgA
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
-endoscopic biopsy - make sure at least 6 samples are taken

The University of Chicago's celiac disease website has a wealth of information and I encourage you to check it out.

KEEP EATING GLUTEN UNTIL ALL TESTING IS COMPLETE!

All lot of thyroid sites are recommending a gluten free diet. But many folks who have Hashi's also have celiac disease. Testing for celiac disease should be done before trying a gluten-free diet. If you do have celiac disease, going back on gluten for testing can be horrible! If tests results are negative, then by all means, try a gluten-free diet. Most folks need a definitive diagnosis in order to maintain the diet for life. I can tell you that going gluten free has not helped my thyroid at all! I have been gluten-free for two years and I am currently on a hyper swing.

Welcome to the forum and let us know how it goes!
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#941388 How Long After Starting A Gluten Free Diet Will Symptoms Recede?

Posted by on 03 March 2015 - 02:40 PM

No, it can takes months to YEARS to have symptoms resolve! Some people do not have any symptoms at all!

I would strongly do some research. The University of Chicago has a great celiac website and discusses testing. Doctors, even GI doc get it wrong all the time. Just read all the threads in this forum.

You do have to be eating gluten to get tested. Since you are just mildly positive, I would take the blood test over in a few weeks after consuming gluten and ask for biopsies (up to six).

I was barely positive and my biopsy showed a moderate to severe damage. My only symptom was anemia at the time of my diagnosis. ,

You could also still have a parasite issue on top of celiac disease. Was that eliminated?

Here is a list of the tests:

-tTG IgA and tTG IgG
-DGP IgA and DGP IgG
-EMA IgA
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
-endoscopic biopsy - make sure at least 6 samples are taken

Welcome to the forum and let us know how it goes!
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#941076 Ucsb Student In Fall

Posted by on 27 February 2015 - 10:37 AM

Congratulations on getting accepted. Is SB short for Santa Barbara?
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#940886 Positive Biopsies, Negative Serology - ?

Posted by on 24 February 2015 - 10:59 AM

My ferritin (iron stores) was a 2. I refused the transfusion even when my hemoglobin was at my lowest (7) and that is the number to be concerned about! Taking iron and going gluten-free improved my hemoglobin level fast and the iron stores continued to build for six months. That is when I stopped supplementation. Take that iron with Orange juice for better absorption. Old fashioned molasses is chock full of iron too. Of course, I do not know your situation, so do your research.

It is nice not to be out of breath anymore!
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#940667 I'm Totally Lost. Help Please?

Posted by on 19 February 2015 - 06:36 PM

Hi! Here is some information regarding testing from the University of Chicago:

http://www.curecelia...5_Diagnosis.pdf

http://www.curecelia...uide/factsheets

Looks like they prefer to see patients who have eaten gluten daily for 12 weeks for both biopsy and blood test.

Unfortunately, your stomach issues will probably return. But getting a diagnosis is important. I have one (dx March 2013), but my husband does not. He went gluten free based on the poor advice of my allergist and his GP 14 years ago. He feels great now, but says that I get way more support from family, friends and medical staff.

It sounds like your doc performed the endo, but did not take samples (biopsy) and that is a shame! I had no visible damage, yet biopsies revealed moderate to severe damage. Anemia was my only symptom at the time. No tummy issues, though my GI wrote down that I had them (I did but only if I ate eggs, dairy or nuts which I have been allergic to most of my life!). I think he did it for insurance approval.

Continue your research and let us know how you are doing. We are here to help!
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#940359 How Often To Retest Family Members?

Posted by on 13 February 2015 - 08:14 PM

Please have the full panel run! I was only positive on one of the tests in the panel. If my doctor had only ordered the TTG tests, I never would have been diagnosed!

My 13 year old tested negative but will get retested every two years or sooner if symptoms present.
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#939794 Recovering From A Severe Glutening...need Advice!

Posted by on 05 February 2015 - 08:30 AM

A wise decision! We avoid eating out as much as possible. It is not fun anyway with the worry of getting glutened. I always get up from the table and ask to talk to the manager or chef. I want them to know that I am not avoiding gluten for the fun of it.

I often carry in my cute little cooler bag into the restaurant containing my own food when dining with gluten-eating friends or I just order a drink. I always have nuts, gluten-free cereal bar or jerky in my purse or glovebox. If I am on the road, I head to the car to tailgate my meal and return when everyone has just received their food. Whatever works for you.

If you get on the plane and you are in the air, you can let the flight attendant know that you might need quick access to the bathroom which may be helpful if there is a line. Choose the restrooms in the back where all the attendants hang out.

Take on food even if you order a gluten-free meal. I have yet to eat one that has not been botched. Of course, there is always peanuts and drink some high calorie juice or soda.

Watch out on the probiotics. If you have any allergies (i.e. milk), taking a milk-based probiotic will only make you feel worse. Otherwise, taking Tylenol or equivalent might help with aches and pains.

Happy flying!
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#939617 Celiac Or No?

Posted by on 02 February 2015 - 09:15 PM

Exactly which celiac tests were taken? Did you get copies of all her lab test and their results? Often doctors run a cheaper screening panel. In my case, if my doc had not run the full panel, my diagnosis would have been missed.

If she goes forward with the endoscopy, be sure to get up to six biopies. The intestinal tract is vast and it is easy to miss damged areas which are not always visible to the doctor. Ask how steroids may negate a celiac blood panel. I can not tell from your posting when she was tested and when she was on steroids and or other meds.

Here is more information from Mass General regarding testing:

http://www.massgener...isease-faq.aspx

Of course it could be something other than celiac disease too, like Karen said.
I wish you well!
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#939122 New To This Group

Posted by on 26 January 2015 - 04:01 PM

She could very well have celiac disease which is an autoimmune response triggered by gluten found in rye, wheat and barley. It is not an allergy to wheat, though it is possible to have both.

Here is some information about celiac disease and testing from the University of Chicago. Any MD can test. You must make sure that she is eating gluten daily until all testing is complete.

http://www.curecelia...onals/screening

I hope she feels better soon!
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#938850 Excellent Gi In Orange County, Ca

Posted by on 22 January 2015 - 12:46 PM

Welcome to the club! Do you plan on doing the endoscopy?
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#938832 Very Discouraged!

Posted by on 21 January 2015 - 08:34 PM

One of our forum members is an MD (newborns - neonatologist) with celiac disease. She finally had to ban gluten from her house as she was getting glutened by her kids! I am sure her kids are healthy without gluten on a daily basis.

Hubby and I are both gluten free. Our kid is gluten-free in the house. She gets pre-packaged gluten food in her lunch. She eats at restaurants and at her friend's house. She washes her hands every time she arrives home (that includes her friends and helps with germs too!). She is super healthy and eats better than her gluten eating friends!

I keep a big bin of kitchenware at my parent's house, along with a five-day cooler. Haul that stuff to my parent's lake house too where 15 or more stay. Keeps us safe while we are visiting. You might consider this for his job too.
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#938258 Can't Put On Weight

Posted by on 11 January 2015 - 05:17 PM

do you have any idea of how many calories you are consuming daily? i have this same problem (not being able to keep weight on) and discovered i wasn't eating nearly enough calories to gain weight (plus, i have a very high metabolism) i found this info out by plugging everything i ate into a phone app called 'my fitness pal' - most people use this when they are dieting, but i (and some others on here) found that it also works in "reverse" :) also, useful to try to keep a food journal when you're on the go. just whip out your phone and plug in your meal. it also has a barcode scan function (that actually *works* lolz) which makes it that much easier.

if you can, eat more healthy fats: peanut butter, almond butter, avocados, etc. i have also heard that coconut oil is good for gaining (but haven't tried a regimen of it yet) some people just put a spoonful of it into their morning beverage (i keep forgetting! ha, i'm sooooo not a morning person!! ;) )

Put that jar of coconut oil by the coffee pot and then you will remember to use it! I use refined as i do not like a coconut-tasting coffee. I snack on fresh butter! I kid you not! Plus, I just poured whipping cream into my plain Greek yogurt and had a blob of peanut butter just before that. Like you said, fat really helps!

After two years, I am eating dairy. I think I am over the lactose intolerance. Casein could still be a slight issue (it is during moldy days) nothing that an antihistamine can not help. My brother is waiting for Spring to see how I fare during pollen season. We have shard the same allergies since we were kids. Still allergic to garlic though.
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