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cyclinglady

Member Since 31 Mar 2013
Offline Last Active Today, 01:22 PM
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#950130 Ouch

Posted by on 16 August 2015 - 02:55 PM

I don't understand this aversion to restaurants. Here in Omaha, other than fast food, most every other restaurant is supportive and easy to work with. There are many, many with dedicated gluten-free menus. As to length of time for contamination symptoms to subsiDe, it is generally a couple of hours to at most two days for me.


My hubby typically recovers in just a few days too.

Not me! I was diagnosed over two years ago (anemia was pretty much my only symptom) and it took me about a year or longer to feel good and resolve all deficiencies. I think was accidentally glutened a few times during my recent vacation in July. Five weeks later, I am still suffering. Now I have abdominal pain, indigestion, fatigue, body aches. My antibodies were re-tested and they are off the charts. I still have not been able to identify the source. I went to high-end restaurants, those that had great reviews written by celiacs on Find Me Gluten Free, and I ate at my parent's house and supervised all food prep. I am the gluten police and my home is gluten free. Yet, something got past me! You bet, I am eating at home for a while until my symptoms resolve.

The point is that everyone presents differently and heals differently.
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#949553 Family Dr. Thinks My Daughter Does Not Need To Eat Gluten To Show Up On Blood...

Posted by on 30 July 2015 - 08:35 AM

Here is a list of 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

(Source: NVSMOM -- )

NVSMOM (you can search some of her threads) is a great source since she lives in Canada. She is a forum moderator and is on often but she is taking time to enjoy summer and her family!

There is a lot of controversy regarding the validity of the Cyrex tests. You can google to find out. Leading celiac experts do not endorse these tests.

http://www.curecelia...erolab-or-cyrex

I hope this helps!
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#948390 Solved Food Intolerance By Treating Parasitic Infection?

Posted by on 07 July 2015 - 12:37 PM

I am not a doctor, but I have never heard of pin worms living outside of the intestinal tract. They are very common in small children. They have to be ingested (usually playing in dirt) and the worms come out of the rectum to lay eggs, kids scratch, put their fingers in their mouths and they re-infect themselves. It is so common that there is an over the counter treatment.

Does your medical doctor concur?
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#947472 4 Years On Gluten Free, Dairy Free Diet And Still Not Much Progress

Posted by on 21 June 2015 - 07:41 AM

If I recall, one of our members PowerofPositiveThinking had some enzyme issues. You might search for her postings (she did get better!). I think she also had pancreatic insufficiency (PI). The enzymes were a prescription and not Over the counter. I am mentioning it because it was hard for her to get a diagnosis and you did test negative on PI.

Here is another link from an old thread that might be helpful:

http://www.celiac.co...estive-enzymes/

An article about enzymes:

http://health.usnews...es-help-or-hype

I am glad you are working with a doctor. Colleen is right. It is important to rule out other diseases and not try to diagnose yourself, but it helps to be armed with questions that you have researched when you visit your doctor. They can overlook things as we all know!
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#947419 Biopsy Decision - Dr Said It Won't Be Negative If Truly Celiac

Posted by on 19 June 2015 - 07:25 PM

I just wrestled with this decision last month.  I wanted a definitive diagnosis, but also knew there was a risk of a false negative biopsy.  In my research the rate of false negative of hugely variable and largely dependent on the person performing the biopsy and the person completing the pathology report.
We also knew regardless of the biopsy results we would go gluten free.
In the end we opted for the scope.  We had a pediatric GI who was very competent and experienced with celiac disease.  The lab was also really good and knew how to really look for celiac disease.  There were benefits to having a definitive diagnosis and we opted to try and get that.
In the end it came back positive, which did not change what we have done since then, but it does give us access to additional resources.  Plus it gives us the absolute confidence we need to make the changes we need to make in our home for our daughter's well being.


Welcome to the forum!
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#947418 6 Years

Posted by on 19 June 2015 - 07:23 PM

I am sitting in my gluten-free front porch on a late summer evening with my faithful black lab at my feet pondering about how I will respond to your posting. Life is good. It is not easy and it never has been, but now I feel like my old self. I can handle so much more physically and emotionally.

I have been gluten free for over two years. Most of my symptoms are gone. I do not miss being anemic. It was so severe that I took breaks constantly because I was exhausted. I could hardly breathe. Just by sheer grit I was able to ride my bike for any great distance. How I manged to run a 1/2 marathon in my condition is beyond me! My anxiety is gone. I thought the anxiety was just attributed to that final year of menopause, but it was my celiac disease and unstable thyroid. My allergies are practically gone. I used to live on allergy meds. Food intolerances and allergic reactions (that would land me in ER) occurred often and are now resolved (I think!). Even my cold uterica is gone and I had that since is was a toddler. Now, I am just hoping for bone improvement.

I used to think that anemia was my only symptom. But that was not really true. Celiac disease was probably the root cause of so many of my past health issues that would come and go. I am thankful that my diagnosis will help others in my family for future generations and not one will have to hear that, "It's all in your head!"

Whew! I have got to get going! I have a teen to pick up from a party. I need to put
final touches on the picnic I prepared for tomorrow's water polo tournament (I miss the ease of eating out). And there's that "last" load of laundry to get done (I just hate to fold and put clothes away!)

Glad you are feeling better, Googles!
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#947373 Not Sure If This Is Truly Celiac Related, But...

Posted by on 19 June 2015 - 06:24 AM

I would never recommend for someone to go gluten free without first getting tested for celiac disease. If the tests are negative and the person wants to try the gluten-free diet to see if it eliminates their symptoms, then fine. The gluten-free diet is a huge commitment not only to food changes but lifestyle changes as well. I can see why your friends would resist.

There is no way that I would have gone gluten free to resolve my life-long anemia. Heck, it took me over a year of being on the diet to see results. I personally needed proof that gluten-free was the cure for my illness. There was also no way that I would have given up so many carbs after my celiac disease diagnosis without proof that I had diabetes either. It is hard to disregard lab results!
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#946659 Not Sure If I Have It Or Not... ?

Posted by on 05 June 2015 - 05:49 AM

I think your doctor is misguided! I have never heard of such a thing. Testing again in 3 months to see if your antibodies have gone down (for diagnosis) is crazy because many folks continue to have elevated antibodies for over a year simply because that is how their body is or they maybe getting exposure to gluten. Plus, the learning curve in avoiding gluten is steep! The chances for your glutening yourself or someone else doing it (e.g. Restaurant) is high during the first three months.

I probably said this before, but my ttg tests were negative. Only the DGP iga was positve (the iga one was negative) and yet I had a Marsh Stage IIIB (moderate to severe villi damage) on my biopsy results.

Oh, iron-defiency anemia hidden by a genetic anemia (thalassemia) was my only symptom and caught by my GI during a routine colonoscopy (Yep, over 50!)
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#946539 Cheating On The Diet

Posted by on 02 June 2015 - 03:57 PM

Your hubby needs to get serious!

I was shocked at my diagnosis because my husband had been gluten free for 12 years (never tested/bad advice from two doctors). We maintain a gluten-free house. The kid gets her gluten fixes outside of the house. Some households can be mixed but you need safe areas to prepare food and he needs to brush his teeth before kissing you besides other things. Yes, you can get glutened from kissing!

Lucky that you had a celiac savvy doctor! Me too!
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#946535 Cheating On The Diet

Posted by on 02 June 2015 - 03:47 PM

I had life-long anemia which was attributed to 1) my being a woman and 2) a genetic anemia which was masking iron-deficiency anemia related to celiac disease which was caught finally during a routine consult for a colonoscopy (Yep, over 50!). Two months in to my diagnosis, I broke some vertabrae doing nothing. That's when I was diagnosed with osteoporosis. I had no tummy issues at the time I was diagnosed.

Why did they run a celiac panel? I too, am curious.
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#946526 Restaurants In Az

Posted by on 02 June 2015 - 02:43 PM

Oh, don't forget In n Out! Ask for gluten allergy. Their fries are safe! They'll cook your burger on the back grille to prevent cross contamination and wrap it in lettuce.
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#946525 Restaurants In Az

Posted by on 02 June 2015 - 02:41 PM

Here is a link to their website:


http://www.gourmetgirlsglutenfree.com

Again, worth the drive. Have lunch and load up on baked goods to freeze. It is on Oricle just north of River on the north side of town.
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#946523 Restaurants In Az

Posted by on 02 June 2015 - 02:20 PM

In Tucson? Gourmet Girls go Gluten Free. 100% gluten free! Worth a drive from Phoenix to pick up their bakery bread and freeze it! Tucson Tamales has a wide selection of gluten-free items too.
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#946245 Does This Lab Result Mean Rule Out Celiac Disease?

Posted by on 27 May 2015 - 03:26 PM

How long have you been gluten free? Usually, you need to be consuming gluten daily for 12 weeks in order to get an accurate result.
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#945991 Carnival Cruise Gluten Free Experience

Posted by on 21 May 2015 - 05:39 AM

I have been on Royal Carribean a few times. Here are a few tips. When booking, notify the carrier of your gluten-free needs. Upon entering the ship the first day, the buffet restaurant is usually the only thing open. Find a head waiter there (they are usually greeting passengers in the doorway) and tell them you have celiac disease and must be gluten free. They will go get you a plate of food from the kitchen. It is not advised to ever eat in the buffet restaurants due to cross contamination issues. The rest of the trip, we only ate in the main dining room. Our head waiters ordered snacks for our room as room service is not equipped to handle gluten-free. The pizza/coffee/snack areas were sent gluten-free items that were held behind the counter. We called in the afternoon ahead of time to ask for the gluten-free pizza to be baked. Took longer, but we got food!

We carried gluten-free snack things from home on port days, but loaded up on a hardy breakfast in the diningroom. Snagged a few apples and bananas for snacks too.

We had a great experience!
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