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kareng

Member Since 26 Jan 2010
Offline Last Active Private
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#715933 Is Contamination Unlikely?

Posted by kareng on 12 July 2011 - 11:32 AM

I'm sorry you're still feeling sick. You are probably not getting CC if your TTG has dropped back to normal. What your Dr. probably didn't tell you is that a Marsh 3 biopsy typically takes a couple years to heal, and can take as long as five years if the damage is really bad. At three months with the TTG down, now your body can start to repair damage.

I also had to go casein-free/soy-free when I first got off gluten to be rid of the stomach trouble. I could only digest those foods after about a year gluten-free. You might try eliminating some of the common problem foods like dairy, soy, and corn to see if any of those are making you feel ill from non-celiac intolerances.



That's what I was going to say! :)
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#715621 Should I Still Call It Celiac Anyway?

Posted by kareng on 11 July 2011 - 08:38 AM

Okay, so my blood work came back negative for celiac, and because I respond so well to the gluten-free diet, my GI dr wants to diagnose me as gluten sensitive (just like he wanted to diagnose me with IBS before I requested the test :rolleyes: ). I'm still firmly convinced that the test result is false because...

1. I had to request it myself so I have little faith in how often my dr. or his lab sees the test to have the experience to run it correctly.

2. My grandmother was positively diagnosed with celiac. :D

3. All my symptoms fit and are being relieved by a gluten-free diet.

So my question is, because I'm officially diagnosed gluten intolerant, do others (i.e. restaurants, family, friends) in general respond more seriously if you tell them your gluten intolerant, or that you have celiac disease?



Tell them Celiac Disease. And if they don't understand, tell them wheat allergy. I know Wendy's workers understand allergy. You really don't have to explain the whole medical history to anyone but us.
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#715426 Tennessee Pride Country Sausage gluten-free?

Posted by kareng on 10 July 2011 - 05:37 AM

Thank you! I just had this question arise in my house and couldn't find the answer on their site either.


Please notice that this info is 5 years old. Products and maufacturing practices change. You need to read the ingredients, maybe check the current website or speak with the company.
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#715177 Advice Getting Our Granddaughter Tested

Posted by kareng on 08 July 2011 - 02:56 PM

I think call the pediatrician. Just be aware that many of them don't want to be confrontational. Even though this could be considered neglect, many don't want to get involved. It's the law but a doctor could rationalize as its not diagnosed, etc.

Perhaps you could get your son alone and talk to him? You might let him know that if she continues with whatever may be wrong with her, when she is in school the teachers will notice. If he refuses to get her help then, they will have to call CPS, its the law.

I don't think you should threaten to call social services yet. But it is something to think of in the future. Are you prepared to take custody at some point? The fiance sounds like a problem.

Good luck! It is frustrating to see someone doing the wrong thing & you can't so much.
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#715020 Just Got Fecal Test Report Back, I'm Allergic To Everything?

Posted by kareng on 07 July 2011 - 07:10 PM

This is purely my opinion based on unscientific feelings. I met the Enterolab doc. I was excited to hear from him. Saw him speak. Left at the intermission. He was a bit too slick for my tastes. I never felt he gave us enough info to understand the way the tests work. I think there is something to testing poop. It is what our body is rejecting. I would take the results with a grain of salt as the saying goes. Use them as a starting or place to start a trial.
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#714733 I Missed The Fourth Of July

Posted by kareng on 06 July 2011 - 05:31 PM

Sorry you are feeling yucky! I think some people have a similar to gluten reaction to corn.

Please! Don't loose faith in chocolate! It isn't evil. Some of the companies that mix it with unnatural additives are the evil ones.

Trying to come up with some jokes but they all seem corny and not very funny. I'm afraid the corn intolerant population would give me an earful or cob me over the head!
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#714651 Anyone Use Penzey's Spices?

Posted by kareng on 06 July 2011 - 11:42 AM

If they don't use any products that have gluten, & most wouldn't even be near a wheat field or wheat harvester or wheat silo or wheat truck, why would they go to the expense to test for gluten? Even then all they could say is it tests for less than 20 or 10 or 5. The tests can't say 0 even if it is 0.
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#714479 Need Help Badly!

Posted by kareng on 05 July 2011 - 08:40 PM

This is just making me mad that you would even consider this!

Depending on the state you live in, sending your child to stay in an environment that you know is unsafe, is child neglect, medical neglect and or child abuse!
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#714473 My Mother In Law Is Making Me Nuts

Posted by kareng on 05 July 2011 - 08:12 PM

So i'm fairly newbie.. and have been doing pretty good. I know that my eating habits were poor for years.. I never thought about it. Now I'm thinking about EVERYTHING I put in my mouth (see other post about thinking about food all the time) This is a huge change for me and its hard. MANY of my favorite food (i.e. french dip sandwiches) are not basically off limits as i've known them.

So my own mom is being great. She lives 6 hours from me and is always sending me recipes and things... my MIL however is being nuts. She thinks is "ridiculous" and how could I be 37 and have this just come up... like i'm making this up. She is like "you can eat this" I"m like "i cannot.. it has croutons in it" She rolls her eyes and scoffs off like i'm purposely cutting out HER food. I tried nicely explaining to her about how I get really ill and its just not worth it. She said "well.. just wait a few weeks and try again" I think she doesnt believe me.

vent over.



Because you are new to this, limit your exposure to her. Let hub do things with her. When you have figured this out, then you can be around her. Then state it once then ignore her. Or don't respond at all.
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#714199 Accidentally Ate Gluten/wheat But No Reaction?

Posted by kareng on 04 July 2011 - 02:28 PM

I've been on the gluten/wheat free diet for 12 days, although I did go gluten/wheat free a couple of days before my blood test (which was negative) before going back on it since I was told to in case I screw up the results.



I just re-read this. You have only been "gluten/wheat free" for 12 days. Going to a bar that can't tell you what is in the food & then actually eating it, tells me you haven't really been gluten free for the whole 12 days. When you are ready, really try the gluten free diet for a few weeks and see if you feel better.

The problem with this gluten light approach is, if you are Celiac, you are producing the antibodies from the gluten so you haven't healed anything. I would think that gluten intolerants wouldn't really heal & feel thier best either.
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#714033 Is Dr. Pepper Gluten Free?

Posted by kareng on 03 July 2011 - 01:50 PM

Dr Pepper and Pepsi may be listed as gluten free on their websites but everyone's reactions are different with this disease. Whenever I drink a dark colored soda, I have a reaction like I have eaten gluten.



That doesn't mean they are not gluten free. You react to something in them. Sometimes it is hard to figure out what.
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#713510 Change In Alexia Frozen Potato And Sweet Potato Products

Posted by kareng on 01 July 2011 - 12:13 PM

Alexia brand frozen potato and sweet potato products (except for potato bites) had gluten free on the label and were made in a gluten-free facility up until now. Due to expansion, they are going to be made in a facility that also processes wheat (possibly also shared equipment. Their printed statement to their employees is somewhat vague on this, so the lovely gal I spoke to was having difficulty finding out information about the equipment line). They now say that they can no longer guarantee there won't be trace amounts of gluten cc.

New potato products made in this shared facility will no longer carry the gluten free label, however, so you can spot them that way. Per the Alexia rep, if a product still has 'gluten free' printed on it, it was made in the gluten free facility.


Isn't that a shame?

How did you find out? Just curious! The rest of us might have just gone along assuming they were still OK.
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#713410 Severely Glutened...

Posted by kareng on 01 July 2011 - 06:30 AM

I got cross contaminated from the peanut butter jar and didn't have symptoms until the middle of the night. Now I feel like I've got stomach flu... complete with body aches, terrible backache, horrible cramping and nausea. I'd made it over a month without even getting slightly glutened. :( (I was on a gluten challenge til the middle of April and then went back to gluten free but got glutened at a restaurant by salad dressing.)

I'd almost forgotten how bad I can feel. THIS SUCKS!!! I only discovered I'm gluten intolerant about 6 months ago (although I've had the symptoms all my life.) We've discovered my 2 year old son is gluten intolerant as well, so at least we caught it early for him.

I guess I can be thankful that my throat hasn't swelled up like it does sometimes, but at least that goes away with benadryl. I haven't had body aches and the whole list of symptoms since April when I was constantly eating gluten for the challenge.

Just needed to vent a little. I get so frustrated I want to cry. I'm still getting used to the fact that there are so many things I can't eat anymore without checking labels, and it's hard to realize that I can't trust anybody when they say something is gluten free. My in-laws were visiting and contaminated the jelly jar right in front of me and I didn't notice until my husband caught me before I put it on my gluten-free bread. I mean it was a lesson for them how sensitive I am and they were nice and understanding about it, but it's still hard to constantly be educating other people.



Have 2 jellies, butter tubs, PB, etc. Put some bright colored tape on the gluten-free one & put your name on it. Anyone who misses hot pick tape with Jen on it is just inconsiderate or mean. Probably shouldn't be in your house. :blink:
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#713406 For Goodness Sake

Posted by kareng on 01 July 2011 - 06:15 AM

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..


Sounds like they just gave you the results of the other tests, twice.

Write down what you want to say when they call or you call for the results. Ask if they can send them to you, or email, or you can pick up a copy - whatever works for you. Write this down so you don't forget. Get a Copy even if they are positive.

Ask them to read you the name of the test, the test result (number) & the range it falls into. Like Test ABC is 220 the range for positive is >150. Write on your paper ahead of time - Test name: ____ Result: ______ Range: ____________
Do at least 5 of these lines.

Ask if any other tests were ordered but not back yet. Sometimes one page is still sitting on the doctor's desk to be read.

No matter what the results, ask what you should do next. Even if negative, insist that you are still "sick" and what is our next step.

Get a big piece of paper & write all these things down & leave a space to put the answer. IF its results from 2 of you, 2 pages. Tell the nurse to slow down (nicely) you are a bit confused with all the numbers & letters.

Good luck. The Celiac tests can take longer because not every lab can run them & some only run them once a week on Tuesday.
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#713262 On The Topic Of Buying Fruit/veggies

Posted by kareng on 30 June 2011 - 01:28 PM

I think germs or bacteria are more of a worry than a stray cookie crumb. The cookie crumb should rinse off. Bacteria tend to grab on & need a bit of slippery soap and wiping or scrubbing.
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