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Member Since 17 Apr 2004
Offline Last Active Today, 02:42 AM

#942892 Grocery Store

Posted by on 26 March 2015 - 06:57 AM

So did this ding-bat also insist that all bags of flour be kept out on the loading dock along with any prebaked items like bread, cookies, cakes etc. Does she want a sign posted at the door that says any customer using lotion needs to put on the gloves kept by the entry. Geez.

Not only is this woman a bit extreme but any manager that did anything other than give lip service to her needs training IMHO.

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#942788 Is Celiac Disease The Culprit Of My Many Tendon Issues?

Posted by on 24 March 2015 - 10:53 AM

Great catch! This drug has so many horrible side effects that the FDA makes the manufacturer print a black box warning on the drug information leaflet. Spontaneous snapping tendons and other tendon issues are the scariest (at least for a runner like me!). I took this drug after surgery and had six months of a neuropathy in one foot. Imagine a live bee imbedded in your foot! This drug is on my "allergy" list. I will never take it again!

I wonder if this could be the cause of my tendon issues. I know it is off topic but do you know if those issues could remain for years and then flare up with heavy use of the affected limbs? I had a horrible reaction to Levaquin. It made me hallucinate and basically shut down my pancreas (as near as I could tell). It took a couple months of pancreatic enzymes before that got back to normal but the tendons in my hands and lower legs just keep getting worse.  I have a physical job and getting tired of having to ace wrap my leg and open fingers using the other hand. If anyone knows anything that might help that would be great. 


I should note that I did report the reaction to the FDA and would advise anyone having an adverse reaction to a drug to also report.  Reporting helps get black box warning and can help in a decision to withdraw the drug from the market. 

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#942336 Help With Blood Test Results

Posted by on 17 March 2015 - 01:00 AM

This result :Deamidated Gliadin Abs IgA  - result was 31 units (reference range is 0 - 19 with moderate to strong positive defined as > 30 units) and the notes on it for me read "Above High Normal"    is specific to celiac.

No matter what the results of your biopsy are you are in the right place. Keep your doctor in the loop as to your reactions to the challenge. If they are severe enough some doctors will stop the challenge. As soon as the biopsy is done you can start back on the gluten free diet. No need to wait for the results.

Do be sure to read the Newbie 101 thread as it has a lot of good advice on how to keep yourself safe once you can return to the diet. 

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#941672 Help Dh People

Posted by on 07 March 2015 - 01:24 AM

Do you eat the coconut oil or put it on the lesions? I find it useful for dry skin and hair also when applied topically. 

Do you know you should limit iodine until your lesions are healed? Iodine can keep the antibodies active in the skin. I only had to drop iodized salt but others have had to limit high iodine foods also. I stopped getting lesions unless glutened within a couple months and within a couple years my lesions became just one or two tiny blisters when glutened. If your breakouts are still severe if you get CCd you may want to limit iodine for a bit. Do add it back in after your skin has calmed down as iodine is a needed nutrient. 

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#941498 My Mother Has Been Diagnosed With Celiac And Diverticulosis

Posted by on 05 March 2015 - 01:59 AM

Looks like diverticulosis does not require any special diet or treatment?



In addition the diverticuli may resolve after a time gluten-free. I had extensive diverticuli throughout my entire large intestine before my celiac diagnosis. GI said he had never seen anything like it. When I had a follow up colonoscopy 5 years after diagnosis they were almost all gone. 

Make sure you check those food based supplements as some will be labeled gluten free but contain barley or wheat grass. You don't want those. 

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#941316 Found This Site It's Got Some Dr. Horror Stories About Celiac..

Posted by on 02 March 2015 - 12:09 PM

Thanks for posting. So sad to see so many that had similiar experiences to my own. Every doctor should have to read that before they get their license. So much ignorance in the medical community. It is nice to see I wasn't as alone as I always felt I was but why do so many of us have to suffer for so long. 

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#941133 Ucsb Student In Fall

Posted by on 28 February 2015 - 02:47 AM

Congrats on the acceptance. You may want to talk to a supervisor at the dining hall and see if they are 'celiac aware' and what precautions they take to feed you safely. If they can't feed you safely then they may drop the charges related to food on your bill so you can use that money to feed yourself safely. Many years ago they put my DD in senior housing her first year so she would have her own kitchenette but back then there were no gluten free options available at the dining hall at the college she went to. I think more schools and other institutions are a bit more knowledgeable now. 

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#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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