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Member Since 31 Mar 2013
Online Last Active Today, 03:54 PM

#945005 Glutened, And Furious

Posted by on 01 May 2015 - 06:55 AM

Are you serious? I thought you were just venting!

Go ahead, if you plan on dragging everyone into the restroom with you. You might make your point or you might just hurt yourself (hard to write a paper when you feel like crap, no pun intended! ) Better yet, spend your time educating the lame people around you. I sat my family down (Yep, even those eye-rolling relatives) and explained celiac disease and had some hand outs and a copy of my lab tests. I kid you not! I told them that they need to be supportive of me and that I am not a hypochondriac! Granted the old folks were the hardest to deal with, but guess what? Others in our family have discovered that they have it to. Makes for a nice gluten-free Thanksgiving!
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#944716 Anyone Highly Air Sensitive To Wheat Here? Lifestyle/adjustment Questions

Posted by on 26 April 2015 - 03:55 PM

Have you been tested for refractory celiac disease? The gold standard for a celiac disease diagnosis is an endoscopy with six or so biopsies after positive celiac blood tests. That is not always possible for various reasons for many folks. Those folks often find healing with the gluten-free diet. But if you are still struggling after being gluten free for five years, then I would recommend a GI consult.

Perhaps it is time to find out what is really happening inside your gut.
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#944217 A Resume On All My Tests And Considerations

Posted by on 17 April 2015 - 11:59 AM

We are not doctors. I know you are trying hard to get a diagnosis.

If you are not getting medical support, you can simply go gluten free for six months or so and gauge how you feel. It certainly will not harm you to eliminate all forms of wheat, barley and rye. If you decide to do this, you must be sure you are 100% gluten free.

I wish you well!
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#943969 Mashed Potatoes?

Posted by on 13 April 2015 - 03:14 PM

Good grief!  I do not know where you people eat out but I have been eating mashed potatoes in restaurants, when I do venture out, for YEARS, and have never been glutened by them.  I do not eat in chain restaurants unless they have been trained by GIG because it is in these chain places where they hire less than knowledgeable people and there is a greater risk of cc or an all out gluten hit.  But all it takes is a conversation with the right people to verify how a side dish is prepared to make the choice whether it is safe to eat.  No one working in a decent restaurant would add wheat to mashed potatoes and then not inform the chef in charge.  `
To the OP......no, gluten is not "created" by the act of mashing potatoes.  In fact, if any waitstaff ever said something as ridiculous as that, I would get up and walk out the door.  I wouldn't want them touching my plate, let alone handling a food order.  When dining out, just ask someone higher up on the food chain how their mashed spuds are prepared to verify it's gluten free status but you can eat mashed potatoes from a restaurant without fear.

I stand my ground, Gemini. I never worked in chain restaurants. You would not believe what can happen in a kitchen. Do I still go out? Yes! But I never assume that food is prepared the same way I do at home.

We travel and have eaten around the world, but we (hubby 14 years gluten-free and I am 2 years gluten-free) have been glutened -- in four star restaurants and hole-in-the wall places. The only restaurant we have never been glutened and never have to grill the manger or chef is in a totally gluten free restaurant. I have been glutened in two GIG trained restaurants. People make mistakes. I fought managment staff at our local university who had been trained to serve gluten free food. Their staff of kids made cross contamination errors right in front of us much to the embarrassment to the manager as we stood and watched. I cringe when I think that students who were forced to buy into meal plans were getting glutened. They used to outsource certified gluten-free desserts, but later, to save costs, made their own gluten free cakes using all the same pans, gunked up mixer used for gluten containing items. Thankfully, this has been resolved!

You are right about the waiter who said that mashing potatoes cause them to turn into gluten. That is truly an "Uh, Oh!" Moment that would tell us to leave ASAP or just order a coffee.

I do not want to discourage anyone from eating out. Common sense, good intuition, and a talk with the manager or head chef helps.

Everyone needs to weigh the risks for themselves.
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#943904 My Celiac Disease Is Causing Stressful Family Conflict

Posted by on 12 April 2015 - 11:41 AM

You are going to "wow" your employers during your internship and you are going to get a fabulous job offer from them! Better than the offers you will receive from your rounds of interviewing at school. It can really happen! It worked for me and it can happen to you! You go, girl!
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#943533 Something In Processed Meats?

Posted by on 05 April 2015 - 07:15 PM

I can not eat nitrates either. Add in any garlic and six to eight hours later I am vomiting that particular food that has been sitting my my stomach. You can not pay me to eat a sausage or hot dog!

We eat fresh meat or uncured if we buy lunch meat like turkey.
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#942717 New Here..and Already Messing Up?

Posted by on 23 March 2015 - 08:06 AM


You might want to check out Newbie 101 section. Cross contamination is a very real problem. Here is the link:

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#942540 Hormones, Hashi's And Celiac- How Does This All Work Together?

Posted by on 20 March 2015 - 10:00 AM

Yep! Hashi's can take wild swings. I have been running hyper lately. It is really frustrating! My swings were severe the last year leading on to menopause. I experienced perimenopausal symptoms for 13 years!

Night sweats: I bought large bath towels and kept a stack, plus a nightgown change on my bedside table -- I kid you not! Blow dryer left out with a nightlight on in the bathroom because sometimes I was chilled from drenched hair.

Migraines: only had two during that time period and never had them before or since.

Irritability: can blame that on celiac disease, thyroid or perimenopause

Wacky 30 day periods occurred only during the last year. Became severely anemic as a result.

Hot flashes: mostly after menopause.

HRT has been really helpful for me. Eliminated the night sweats. Made my life more manageable. Having insomnia does not make for a fun person. I was on bioidentical HRT on and off. Hubby was the first to mention that I should get back on them! Something to consider combatting the perimenopausal symtoms.

Take care!
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#942348 1St Blood Test Results

Posted by on 17 March 2015 - 07:19 AM

If my doc had not ordered the complete panel, I would not have been diagnosed. My TTg was very low and my total serum IGA was normal. I was positive on one of the DPG tests. My biopsy showed moderate to severe damage.

Keep eating gluten until all testing is complete. A firm diagnosis would be very helpful for your son if you can get it (accommodations at school/university, further testing for other issues like osteoporosis, etc.
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#942221 How Long Before Testing Should I Restart Gluten

Posted by on 15 March 2015 - 11:26 AM

Any medical doctor can order the celiac blood panel. Make sure the complete panel is ordered. They often just order a shorter version to save on costs. If I had not had the complete panel, I never would have received a diagnosis. Not sure how your insurance handles it though. They may want a GI to order it.

Five days of being gluten free should not affect testing. Just get him back in gluten.

If celiac disease is ruled out, then I would strongly suggest going gluten free for up to six months. This forum can help guide you through he gluten free process. It is not just about making sure gluten in not in his food (cross contamination, hidden gluten , etc.)
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#942214 How Long Before Testing Should I Restart Gluten

Posted by on 15 March 2015 - 10:56 AM

He did NOT get tested for celiac disease.
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#941693 Diarrhea For Over A Month While Gluten Free?

Posted by on 07 March 2015 - 10:41 AM

I think you need more time. Time to make sure you are not getting cross contaminated, eating hidden sources of gluten, etc. It takes months to recover. Remember, gluten sets off an autoimmune response.

Then there are the intolerances that go along with a damaged gut. Eat things that are cooked through and easy to digest. Eating lots of raw fruit and veggies is not the thing to do when you gut is wreaked! You can eat those things later. Maybe that green juice is causing you problems.

I am allergic to garlic and the entire family: leeks, onions, etc. This is one food family that I have not been able to overcome despite being gluten free for two years. So, even though garlic has all these healing properties, I can not eat them.

Keep a food journal. You might be surprised.
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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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