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Member Since 17 Apr 2004
Offline Last Active Today, 12:32 AM

#945712 More, Worse Symptoms,.... Depression Taking Hold.

Posted by on 16 May 2015 - 01:02 AM

It sounds like you are still getting glutened. You say you travel for your job what are you doing for food when you travel? Can you talk to HR and explain the situation or possibly take sick leave while you get this figured out?  If not can your doctors order a celiac panel for you and then get a blood draw done before or after work? That would at least give you a starting point for you and your doctor to start at. 

Sorry you are going through this. I am going through something similiar as far as the exhaustion on your days off is concerned. I call them 'lost days' and it can make things very difficult. Hope you get some answers soon. 

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#944688 Questions About Crumbs

Posted by on 26 April 2015 - 11:01 AM

This is a huge problem for me to figure out :(. At this time, I don't know what I'm going to do, but I'm grateful to get the facts here. I will research different types of feed and be sure about wearing the mask for now. Thanks.

Do look into other feed. You may be able to find some that is gluten free and that your horse will tolerate. Perhaps make a call to the horse's vet. He might have some feed suggestions. Also be careful when grooming. 

If no one else in your household can handle the feeding perhaps a neighbor, 4 H kid, or another horse owner might be willing and able to help out. Someone that loves horses might even do it in exchange for being able to ride one when they are done. If your horses will tolerate other riders. 

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#944627 Major <3 For Andalou Naturals

Posted by on 25 April 2015 - 09:57 AM

I never meant to post something that would cause a problem. I do not use their hair care after seeing that they run out so quick after the first time. As for the face cleaner I use triple checked that one and it's clear that I can see but I'm no chemist. Again if I caused a problem I apologize. I double checked my post and did not see any links I posted in regards of claims.

You are not the one that posted any claims.  I think the response from admin was in reference to post #2. Please don't be concerned you didn't cause any problems. 

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#944522 My Celiac Disease Is Causing Stressful Family Conflict

Posted by on 22 April 2015 - 11:51 AM

one of my best friends is now a co-owner of a restaurant.  i was like, YAY!!!  i'll finally have somewhere to eat out without worry!!!!  nope.  his business partner wants nothing to do with food allergy responsibility aka he's afraid if they tout something as gluten free/celiac safe that someone will sue them if they make a mistake.  'too much risk'  even though i can read their menu and most of it is completely and easily could be prepared gluten free (simple, fresh menu - steak, lobster, salads, etc nothing really fancy or intricate).  i even said i would go into the kitchen and supervise.  (i even offered to train the staff)   smh.....   <_<  it sure would be nice to go (anywhere) and not have to fingerprint every meal    :(

If it is not a big restaurant you could go in with that friend on a day when the co-owner wasn't there and talk to the chef. You could certainly have something like a steak and baked potato with no problems. All the chef would need is to cook it in a clean saute pan and not use gluten seasonings or sauces. Then when you go in just tell the waitress to tell the chef to give you an 'arlene special'. 

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#944494 Push For Diagnosis Or Just Wait?

Posted by on 22 April 2015 - 12:53 AM

OP- it sounds like your little one is responding very well to the diet. It is great news that she is recovering so quickly. If it was my child I would keep her gluten free. If you do decide to test later you will have to challenge but with the preschool years being so important for growth and development I think you are wise to continue with the diet for at least now. 

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#944493 Push For Diagnosis Or Just Wait?

Posted by on 22 April 2015 - 12:49 AM

Yes HLA it's the genetic test and if she comes out negative that roules out celiacs for ever, but is she's positive for dq2 or dq8 it's very likely she'll develop celiacs, so maybe go gluten free. 

While rare there are diagnosed celiacs without one of those 2 genes. Having one of the 2 genes does not make it "very likely" she will develop celiac many people carry the genes but never develop celiac. 

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#944182 Bumps In Throat?

Posted by on 17 April 2015 - 01:19 AM

Have you seen an ENT (ear, nose and throat) doctor? If not perhaps make an appointment with one. You also might consider seeing an allergist in case this is an environmental allergy unrelated to food. It sounds like it is making you miserable so I hope they find the cause soon. 

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#943371 New Member. My Daughter Has Celiac Disease?

Posted by on 03 April 2015 - 01:26 AM

Welcome to the board. There is no doubt that she is celiac with so many positive results. Do not take her gluten free until after she sees the GI doctor. The doctor may want to do an endoscopy and she needs to be on gluten for the results of that to be valid. Even then sometimes damage can be missed. After all celiac related testing is done then she will need to get on the diet. Do be sure to read the Newbie 101 thread at the top of the coping section as it will have info to help insure that she is safely gluten free after all celiac testing is finished. 

It would be a really good idea to get all other family members tested even if they don't seem to have symptoms. It is not at all uncommon for there to be other family members diagnosed once one is. 

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#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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