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Member Since 17 Apr 2004
Offline Last Active Today, 01:20 AM

#931916 Kraft Products ... I'm Shocked!

Posted by on 03 October 2014 - 02:24 AM



 You accuse us of passing misinformation, yet you are doing just that yourself.   I was shopping just the other day and saw some cheese that looked good and would go nicely with the gluten-free crackers I had,  read the label and wheat flour was one of the ingredients.  It wasn't beer, it was wheat.  Same with the stupid frozen vegetables, why do they need to put a wheat derivative in a bag of frozen vegetables???  I'm glad I checked because that would have been one item I would have THOUGHT I could just pick up and buy--NOPE.  Maybe you have just developed a routine where you buy the same things over an over and don't have to look any longer but those of us that are new are still in the learning process.  

In both the instances of gluten 'hiding' that you are giving it is not actually hidden. It was in the ingredients list! That is not hidden gluten. We need to read labels. We need to read them every time we buy something processed. Is it hard to get used to at first, yes for some of us it is but we do get used to it. 

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#931358 Guess I Am Back

Posted by on 26 September 2014 - 02:01 AM

While you are waiting for the appointment call the doctor's office and ask if you can go in and get the celiac bloodwork done. Tell the nurse since celiac runs in your family that you would like the doctor to have the results in hand at the appointment. Stress the amount of weight you are losing and your increase in symptoms.

Do not go gluten free until your tests are done. 

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#931274 Dh Sometimes Look Like Poison Ivy?

Posted by on 24 September 2014 - 02:59 PM

My DH was misdiagnosed throughout my entire childhood as poison ivy. Doctors wondered how I would get it even in the winter. Of course they never considered it might not really be poison ivy.  I did manage one year to actually get poison ivy ON TOP of the Dh lesions. That was true hell. The derm my Mom took me to said I had gotten poison sumac on top of the poison ivy. He couldn't figure out where I got it though since it didn't grow in the area I lived in. I did get relief from a course of prednisone but the doctors would only give me a script once a year because of the risk of side effects.  That would clear the DH for a couple of months but it would always return. 

You really need to be more careful with the restaurants where you are eating. If you are not mentioning you're celiac and ordering from a gluten free menu you should do so. Your entire system is being impacted by getting glutened even if the most troublesome symptom is a DH breakout. 

I hope this outbreak heals for you soon. 

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#931234 Thoughts On Test Results

Posted by on 24 September 2014 - 02:03 AM




Some schools will NOT do the accommodations without positive tests and endoscope--thanks to all of the "fad" dieters out there.....




In this case the doctor has given her a diagnosis. She is under no obligation to tell the school how the doctor arrived at the diagnosis. She just has to show them the paperwork she gets from the doctor saying the child is celiac. 

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#930991 Endoscopy Or Not?

Posted by on 18 September 2014 - 11:50 AM

If you were talking about an adult then I likely would say just go gluten free. However your child will need to be safe in school or daycare and in most instances a diagnosis is needed to accomplish that. If either your ped or your GI doctor is willing to give a diagnosis based on her improvement on the diet then IMHO you could skip the endoscopy. If not then it is better to do it now while your child is still eating gluten. Many have nasty reactions to a gluten challenge after they have been gluten free for a while so a challenge may be difficult later on. While any procedure has risks most endos go smoothly and only require a short time under anesthesia. 

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#926110 Don't Know If I Should Leave My Job Or Not!

Posted by on 02 August 2014 - 11:55 AM

I don't think a mask is going to be enough. Plus having worn them myself at times they are uncomfortable and unless they are respirators air does leak around them. I baked for a living for a short time and know that you are likely covered in flour by the end of the day. If you really love baking and there isn't a gluten free bakery that is hiring near you perhaps you could start one up. Depending on your city's codes you might even be able to do it out of your house or a converted garage. 

I am sorry you are being put in such a tough spot. I hope you can come up with a good resolution to this problem.

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#923338 Just The Left Side, Or Just Me?

Posted by on 09 July 2014 - 01:59 PM

Have you had any celiac testing yet? If not ask your doctor to test. Has your doctor ruled out anything else it could be? Have you had any testing done like barium swallows, ultrasounds, x-rays etc? Projectile vomiting like you describe is not to my knowledge common with celiac but that is not to say it can't happen. 

Do keep eating gluten until all celiac related testing is finished. 

I hope this gets figured out for you soon. 

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#922081 Contamination Anxiety- Help!

Posted by on 30 June 2014 - 12:23 PM



I have read that one research test program showed that 10 mg of gluten did not damage intestines of adults with celiacs in the program and that 50 mg of gluten did damage intestines.  So "a few molecules of gluten" may not be harmful, but you do need to minimize your gluten intake.




It is true that we can have a very wide variety of sensitivities to small amounts of gluten and do have to do what we need to do for us to respect our own sensitivity level.


My issue is with studies like the one you wrote of above. It seems so many studies only concentrate on the damage that may be done to our intestines. Researchers seem to totally ignore that Celiac (not celiac's) is an autoimmune disease not just a gut disease. We can have many more impacts that involve body systems that are pretty much totally ignored, like the brain. Just because the villi don't get damaged IMHO does not mean that the antibodies are not attacking another system. Many of us have to be very strict to heal things like ataxia and DH or to avoid fatigue, joint and muscle damage or damage done to other systems from the inflammation that the antibodies cause. 

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#922027 Recoving Quikly After Eating Contaminated gluten-free Food

Posted by on 30 June 2014 - 04:02 AM

gluten-free I was thinking the same thing. The tight throat concerns me. It is possible to have both celiac and an allergy. OP you need to mention this to your doctor as allergic reactions can go from annoying to deadly with no warning. 

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#921586 Vertigo/peripheral Neuropathy

Posted by on 25 June 2014 - 02:43 PM

If you never had these type of symptoms prediagnosis you should strongly consider heading to your regular doctor. ERs can only check for so much and your GP can give you a full workup and a referral to a specialist if needed.  As another poster stated not everything is gluten related. This needs to be checked out, IMHO.

I hope your feeling better soon and welcome to the board. 

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#918133 How Do You Deal With Waves Of Depression Post Exposure?

Posted by on 28 May 2014 - 11:13 AM

Those horrible dark feelings are for me the first sign I have been glutened. If life seems not worth living I know I am in for a couple of rough weeks. It does help pinpoint a gluten incident for me also. You need to be as strict as possible with the diet. It can be hard when your new to the lifestyle but it will get easier in time. 

I wish I could be more helpful in ways to deal. I try to stay busy with mindless stuff and make sure I do something that I consider a treat. I know that my mood will impact how I perceive stuff other people say or do around me. I try to keep that in mind so that I don't snap at someone or burst into tears over a misunderstanding. 

I make sure not to forget my vitamins, especially my sublingual B12. Excercise, a long walk, hot bath and lots of chocolate seem to help a bit also. 

It may not be the case for you but over time the duration of my depressions has gone from days at the beginning to just 1 day now that I have been gluten free for long time. 

I hope things get better for you soon.

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#916205 Left Side Pain, I'm New In Town Help Me Out!

Posted by on 16 May 2014 - 03:56 AM

It would be a good idea to mention this to your doctor. It could be celiac related but it could also be something unrelated. Are you having other issues like D or C ? If your female you could have something going on like ovarian cysts or another problem in that area.

Hope it resolves for you soon.

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#912649 Starting To Wonder (List My Symptoms)

Posted by on 15 April 2014 - 04:03 AM

Do go get yourself tested as your symptoms do sound like they could be celiac. Do not go gluten free yourself or have your daughter go gluten free until all celiac related testing you want to have done is finished. After that go gluten free for a bit to see if it helps.

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#909743 Another Request To Help With Test Results

Posted by on 21 March 2014 - 11:09 AM

Glad I read this, it's similar to my biopsy report. Waiting to take the genetic test. 

Genetic testing can be part of the diagnostic process but it is not a definate that you don't have celiac if you don't have either of the two most common celiac associated genes. If you do come back negative on the gene test don't let that convince you not to do a gluten free trial when all your celiac related testing is done.

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#908803 Over 25 Years Of Chasing A Diagnosis, Please Help, Elevated Ttg Iga

Posted by on 13 March 2014 - 03:11 AM

Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in? I lasted six days, I felt like I was dying. My eyes were burning and black and red underneath with swelling, I looked like death. My husband is traveling and I couldn't take care of our five year old. Two days ago I needed a break, I went off gluten again. I just couldn't take it anymore. Besides a massive headache when I woke this morning (I get neck headaches due to two slight herniated disks in my neck and slight arthritis), I felt better today with more energy and more clear then I ever had. I ate gluten free all day again today, I never felt so FREE! Tomorrow it all comes to an end, my husband yelled at me and told me I better listen to the doctor and eat my gluten. I have cried so many times today that I have to start ingesting again. Now being off gluten twice in the past few weeks and going back on has convinced me gluten is 100% poisin to me. No matter what my test results may be, there is in no way, shape or form I will ever be ingesting gluten ever again. 6 more days of gluten and then the rest of my life can begin! I live in NY and the thought of a NY bagel used to get me so excited. Today the thought of it makes me ill. That is so crazy because bagels were my favorite foods in the world. So tomorrow, wish me luck, what should I eat? I can't wait till my husbands home so I can roll up in a ball and wait out the rest of my time.

Sorry you are suffering so much. Call your doctor's office this morning and ask to speak to a nurse about what is going on with your symptoms. Your doctor may tell you to stop the challenge. Reactions after stopping gluten even for a short time and then adding it back in can be severe and are an important part of the diagnosis process. Your doctor may even give you a diagnosis based on that reaction and your blood test results.

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