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ravenwoodglass

Member Since 17 Apr 2004
Offline Last Active Today, 12:10 PM
*****

#937550 Help With My Test Results Please.

Posted by on 29 December 2014 - 11:28 AM

Links have been posted disputing this claim and those 3% have been found to have something, not Celiac....if Celiac is an autoimmune disease, which it is, there has to be some genetic component present, identified or not.

No one is saying that celiac is not genetic. Just that not all the associated genes are commonly known. In my own family I have seen one person who was diagnosed with positive blood and biopsy and then years later had their genes tested and was told since they didn't have DQ2 or DQ8 that they couldn't have celiac. So now they are back on gluten and suffering the effects. That is what encouraged me to get my genes tested. I have DH and am a firmly GI diagnosed celiac and I don't have either of those two genes. I have a double DQ9. IMHO no one who has positive blood tests should quit or not start the diet just because the gene test is negative. 


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#937327 Feeling Sorry For Myself And Confused.

Posted by on 24 December 2014 - 12:39 PM

Welcome to the board. You do need to be consuming gluten for any celiac related testing. You may want to call the doctor's office and ask to speak to a nurse. It is possible that your doctor told the GI about the severity of your reactions and that is why the told you to stay gluten free. It is also possible that (shudder the thought) they are not all that familiar with celiac testing and made a mistake. 

It isn't unusual for the body to react more strongly after we go gluten free and accidently get some. Do be sure to check out the Newbie 101 thread at the top of the Coping section so you know what you need to do to keep yourself safe.


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#936751 Cookie House (Rant)

Posted by on 13 December 2014 - 03:00 AM

Or stand around the cookie table, and look at people like they are really stupid and ask " you still eat this shit?"

While sipping on the Baileys and munching a delicious gluten-free cookie you brought with you. 


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#935397 So Frustrating...

Posted by on 21 November 2014 - 03:04 AM

I agree with the others. You need to do a proper gluten challenge, a couple of slices of bread a day for at least a couple of months, and then get retested. If your doctor(s) have told you to only eat it for a couple days you need new doctors. It does sound like you could be one of us and seeing as you have children and celiac is genetic it would be a good idea to get properly tested. 


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#934363 Gluten Threshold

Posted by on 07 November 2014 - 03:17 AM

are you kidding me??? people w CELIAC disease CAN NOT TAKE a chance!!! cross contamination is the "BIG" fear!! because we obviously have to steer clear from all things containing GLUTEN. this just pisses me off! when will people understand that this is not an allergy like pollen or peanuts but realize this is an auto immune disease!?!?!?!?!?

Very few people who are not celiac understand the cross contamination issue until they do some research. Alfred is doing the responsible thing and coming to us for information. I am thankful that he is doing so while his product is in development. You should be too.


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#932870 False Negative Test Results?

Posted by on 18 October 2014 - 03:32 AM

 False negatives do happen. It delayed my diagnosis for many years. However if you want to have celiac related testing done you have to be eating gluten. If you have stopped and improved and any introduction makes your symptoms come back then you know that your body doesn't want it. That will make a challenge difficult.

 You should get the total IGA and IGG done. I have never seen a 0 for those gliadin related tests before. Doesn't mean it doesn't happen I have just never seen it.

You both have very low B12. A sublingual supplement will help with that. Do ask the ped before giving it to your child though. Low B12 is quite common for folks with celiac. 


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#932065 Kraft Products ... I'm Shocked!

Posted by on 04 October 2014 - 12:01 PM

I do read every label--but when something comes up and I don't know what it is, I put it back on the shelf...paranoid, maybe, but like this example, what is it???  So, us newbies coming here, asking for help, getting blasted because we choose a product that says gluten-free vs one that does not because we are new...that's not ok????  Then, if you do research, 5 sites say gluten-free, 5 say it's not--so who is right???  Point being, if Kraft (or any company) knows a product is gluten-free, label it as such...

No one is 'blasting' you because you want to choose a product labeled gluten free over one that doesn't. I was just as paranoid as you about it when I was first diagnosed because I was so severely ill pre-diagnosis and even a trace amount of gluten has me in pain, unable to think for about 3 weeks and also gives me a nasty GI bleed that can last up to 3 days. I shop at Wegmans because they label all their gluten free items and for a while would only go with their brand. However in the 12 years now that I have had to be very strictly gluten free I have learned about companies like Kraft and Unilever. Both will clearly disclose any gluten ingredients on the label. People have tried to explain that they will not hide gluten with chemical names. If something is derived from a gluten ingredient they will say so on the label. They will not say that the gluten has been 'processed out' like the coffee and beer that were mentioned. (By the way I would not touch either for all the money in the world). The best place to go for info on whether something is gluten free or not is the maker. If you really don't want processed food that does not carry the gluten-free label that is your choice. It is best early on to not consume any processed food anyway. 


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#932011 Trying To Figure Out What Is Wrong

Posted by on 04 October 2014 - 01:31 AM

The test you are positive on is specific to celiac. Be careful with the Librax as it can have a sedating effect so driving may be impacted. I never found it to be helpful either and it is not something IMHO that should be used long term. It is time to get a second opinion from a different doctor. If your doctor objects it is time to find a new PCP. Keep eating gluten until all your testing is finished and then after testing is done go ahead and get on the diet. 


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#931960 Kraft Products ... I'm Shocked!

Posted by on 03 October 2014 - 11:53 AM

I really think MOST of the glutening I get is because hubby still eats gluten in our household and even though he thinks he's being cautious, I still feel like he's getting it on the fridge door or microwave or somewhere and I come along and pick it up.  Maybe one day he'll stop.

You could also be glutened by his kisses if he doesn't brush his teeth first. It can be hard to live with gluten eaters but it can be done safely. If you can get him to use just one space on a counter to make a sandwich or other gluten item and perhaps get him to wash his hands after he eats that may help.


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#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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