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Member Since 19 Aug 2008
Offline Last Active Dec 17 2014 09:06 AM

#721162 FDA Open For Comments

Posted by on 06 August 2011 - 08:48 AM

Was announced past week that the FDA will await more comments before finalizing regs on gluten free food labeling.

One last chance to let them know your experience and what needs to be done to protect people with Celiac Disease.

I submitted comment that if it were peanuts, they would not allow a product to state "Peanut Free" on the label, if on the back of the jar, in small print, it said "Processed in a Facility That Also Processes Peanuts"! Why should that be different with gluten? I've been nailed so many times by products like that, until I finally started only buying prepared foods that state "Certified Gluten Free." Really, why should it be OK to double me over with abdominal cramps, sending me back and forth to the bathroom, making me sick to my stomach, kill all the living villi in small intestine, and open me up to a multitude of other auto immune diseases?

How to contact:

The docket will officially open for comments after noon on Aug 3, 2011 and will remain open for 60 days.
To submit your comments electronically to the docket go to www.regulations.gov
1. Choose “Submit a Comment” from the top task bar
2. Enter the docket number FDA-2005-N-0404 in the “Keyword” space
3. Select “Search”
To submit your comments to the docket by mail, use the following address:
The Division of Dockets Management
Food and Drug Administration
5630 Fishers Lane, Room 1061
Rockville, MD 20852
Include docket number FDA-2005-N-0404 on each page of your written comments.
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#669583 Question About Doctor's Recommendations

Posted by on 21 January 2011 - 01:15 PM

And, by the way, of course her blood work would come back negative if she has not been eating gluten!

It's scary sometimes, what we have to endure to finally get a diagnosis.

I guess the most important message is to learn to be your own advocate.
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#669555 Diagnosed 2 Years Ago Only By Blood Test, Could It Be False?

Posted by on 21 January 2011 - 11:48 AM

I was tested back on November 13th, 2008. I didn't think much of it since my doctor called and said "You have celiac disease". I've been living gluten-free since. However, I've been having the same symptoms I had before: Gas and bloating. I had a biopsy done in May of last year and it came back negative, which isn't surprising since I've been gluten-free. I called my doctor today to get the results of the blood test that they used to diagnose me. They said it was the "Tissue transglutamine, IGA" - not sure what I spelled correctly or incorrectly there :) The results came back abnormal >100 with <10 being normal. I think I felt better for awhile but for the past year, perhaps, still have gas and bloating. I don't recall having any other symptoms except perhaps irritability. I read a lot that people have muscle pain, headaches, etc.

I feel fine today but felt pretty badly yesterday. Really, the best connection I can find for my issues is my gum. I chew gum every day, typically sugarfree. I know that sugar alcohols can cause gastro problems but it seems to be an immediate reaction and it doesn't seem to end. As well, I just realized I have not had my fat free Nestle hot cocoa mix today (processed on shared equipment).

I'm just wondering if there's another test I should have done, if you guys think that yes I definitely have celiac, if my gum is causing the problems, etc. Any opinion would be greatly appreciate.

As a side note, I did post something similar to this on the "coping with" forum and did not receive many replies; I also did not have my blood test results handy. Please let me know if this should be deleted as a duplicate.
Thank you!

Have your doctors done any follow up blood tests to see that your antibody levels are coming down? If they're not, you're still ingesting gluten, from somewhere (be it the gum, an old toaster, shared kitchen counter space, medications, or products that aren't safe).

I'm not a medical person but I've never heard of getting a false positive. False negatives, yes, for various reasons, but positive blood panel is usually just that, positive for celiac disease.

I think my first year or so after diagnosis I ate things made on shared equipment. But the longer I go, and the longer it took to bring my levels down, the more I've eliminated things like that. I've gotten much pickier and my follow up blood work got progressively better.

On the feeling better side... Many things resolved very quickly, some took longer. And the longer I was gluten free, the more severe my reaction to gluten has become. That could be what you are experiencing.

Like the other member mentioned, processed on shared equipment is a personal choice. But it's one I now say no to. Trace amount here, trace amount there... Even my GI doc says the problem is it all adds up. How many times in a day or couple days or week? They start to add up to something more than a trace if ingested too close together.

Food for thought.
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#662389 Knife & Fork gluten-free Lunch

Posted by on 22 December 2010 - 09:10 AM

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#650023 Need To Vent About Family

Posted by on 29 October 2010 - 07:33 AM

Just curious, were you eating gluten free prior to being tested? That could result in a negative.

And I empathize with you on that "just a little" -- I mean, if someone had a person over for dinner that had a peanut allergy they wouldn't even dream of putting "just a little peanut butter" in what they're cooking. Why is this (gluten) hard to perceive? We had a luncheon at work where the sales staff prepared dishes - Mexican food theme - and one of the guys came into my office and told me it was safe for me to eat his dish because he probably only used 1/4 cup flour in it. !!!!! Only! I'm sure I just looked at him like he was nuts.
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#604303 Muscle Weakjness / Twitching / Neurological Symptoms?

Posted by on 13 April 2010 - 10:51 AM

I had a whole host of neurological problems, which we now know were related to undiagnosed celiac disease. Many have gone away completely (I'm at about 2+ years since diagnosis). Roving pins and needles, muscle pain, numbness, ataxia. As explained to me, these are the result many years (decades, for me) of intestinal damage and not absorbing vitamins and nutrients -- especially B12, and Vitamin D.

Pre-diagnosis I was also evaluated for MS. Thankfully it wasn't that and now we know what it is.

Definitely look into supplements, my GI doc and nutritionist recommended sublingual B12 (Methylcobalamin). If your Vit. D levels haven't been checked, that would be worthwhile. I ended up having to take prescription dose Vit D, once a week.

Hang in there. It's a bit of a process, but you're on your way to healing now.
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