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Member Since 26 Apr 2010
Offline Last Active Aug 07 2014 05:07 AM

#804055 Swollen Neck Absolutely Insane

Posted by on 16 June 2012 - 10:07 PM

You guys arecompletely right but im in quite a predicament. My allergy doc is the one who started me getting tested for celiac, however, he does not appear to be up to speed on the fact that gluten intolerance and celiac are different and that it is necessary to be on a gluten diet to have a chance of accurate search results. I really need to find a new general doc or something who understands all this. Im at a loss with respect to that. :(

I'm thinking you should ask about a wheat allergy diagnosis and be done with it! You may have celiac as well but it really doesn't matter as far as wheat being poison to you.

Please be careful about the breathing. I'm still worried for you if you didn't get to urgent care today. Call an ambulance if you get worried about breathing because that can get dangerous really fast. If it's still bad, go when you read this in the morning, mkay?
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#803822 Negative

Posted by on 16 June 2012 - 12:39 AM

I answered your other post with the ANA. Why don't you go low-iodine as well as gluten-free and see if it the rash goes away? :)
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#803285 Id For Gluten Intolerant

Posted by on 13 June 2012 - 02:58 PM

I put it on my medicalert bracelet for my dangerous medication allergy. I don't know that it's a good idea for only celiac and I sort of regret putting it on my bracelet. I'd rather they do whatever treatment is medically necessary even if it glutens me in the process. We have a few on the board who get into really dangerous situations if they are exposed to gluten, and they do need the alert bracelets.
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#802950 Genetic Test Results........

Posted by on 12 June 2012 - 11:34 AM

You're DQ5, DQ6. By the way a negative test only means you're at low risk for celiac. There are people without the so-called celiac genes who are celiac by blood and biopsy.
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#802949 Would Anyone Recommend Homeopath Testing?

Posted by on 12 June 2012 - 11:31 AM

I'm unwilling to go back on gluten in order to be testing because of the harsh reaction it puts my body through.

A friend of mine was diagnosed with coeliac after seeing a dietician and undergoing homeopath and food allergy testing.

I was wondering if anyone would recommend undergoing Homeopath, had any experience with it or any advise on seeing a dietician and avoiding the doctors (as all doctors in my experience have been useless!)

Thanks! K x

This is not legitimate celiac testing. Food allergy tests don't test for celiac and your strong response to gluten is more reliable than any pseudo-scientific homeopathic tests.

Unfortunately we undiagnosed folks (I'm in that boat too) are stuck with either gluten challenging or continuing to live as if we're celiac. It sucks, but that's the reality of it.
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#802552 For Those Who Gave Up Dairy...

Posted by on 11 June 2012 - 09:25 AM

Google for "dangers of milk" and get shocked. You might not want to go back on dairy products now you have learned to do without.

Look in the legitimate medical literature (which does not show up on Google) and you will get an entirely different picture. Most of the health information on the Internet is garbage.
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#801782 Contamination On Food Boxes

Posted by on 08 June 2012 - 02:30 PM

Wow, so Heidi please don't think we're all wanting to fight with other when you read this. :blink: I notice you're new here and I didn't even welcome you. Welcome to board. Feelings run a little high when it comes to how careful you have to be about gluten. We're usually a much more laid-back bunch!
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#801670 Contamination On Food Boxes

Posted by on 08 June 2012 - 09:27 AM

Gemini, Do you know what IMHO means??? After suffering with undiagnosed Celiac & DH for 50 plus years, I can call it LOVE.... Some here may not respect my IMHO either, but so be it... Some here haven't suffered enough either... I say, Spread the Love to Family Members...

When I first read the post I was reminded of a friend with OCD I used to help. She was obsessed with the possibility of germs on food boxes and when she shopped she would wear gloves, line the shopping cart with bags, wipe off the conveyer belt at the checkout, and double-bag all her food. She wanted me to do the same when I shopped for her. Her therapist told me shop the way I do for myself and NOT lie to her that I was doing these crazy things. (I was lying to simply get food into her apartment; this woman was severely disabled.) The problem is, if we agree to irrational and fearful requests, we continue to enable and encourage the fear. That's not an act of love. That's lazy and destructive and doesn't allow the people around us to face their fears and grow out of them.

There is NO DANGER to a person with celiac putting a frozen dinner in a bag in the car on the way to work. Period. It's pure irrational fear and the family member who is worried about this really needs a firm and loving reality check. It's stressful enough avoiding situations where there is a real danger of being glutened; creating danger out of safe situations will be detrimental to this person's mental health in the long term.
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#801650 Contamination On Food Boxes

Posted by on 08 June 2012 - 08:25 AM

Talk about guilting people into being overly compliant when there isn't any issue! This has nothing to do with love and not everyone has a problem with gluten. If the food is being carried in a bag from the grocery store, there is no issue at all.
Have some common sense people! <_<

The "in a wreck and gluten spilling out" is really over-the-top. I agree with you that capitulating to this and not buying frozen food for work (that isn't even stored in the freezer) is enabling overly fearful behavior. We're in places with gluten all the time like grocery stores, our workplace where people eat bagels and donuts, friends' homes, restaurants, and cars. None of these situations pose any risk unless we're eating the food. (Give or take RARE allergic or anxiety reactions in the bread aisle.) It's important be realistic about what can cause issues for someone with celiac like getting crumbs in the butter, compared to safe things like transporting a boxed frozen dinner in a bag to work. To be completely honest, it occurred to me to wonder how your family would even know?

Heck, last time my picky nephews visited they wanted waffles and I didn't want normal Bisquik in the kitchen. I bought Eggos, kept them in the freezer, cooked them in the toaster oven, and put the toaster oven rack through the dishwasher afterwards. No big deal and I didn't get CC'd. You just have to use common sense.
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#801553 Contamination On Food Boxes

Posted by on 07 June 2012 - 10:40 PM

I'm celiac and I ride in my friends' cars all the time without worrying about gluten from their groceries. I don't see any issue.
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#799165 Clever Kid Using celiac disease To Stay Home From School . . .

Posted by on 29 May 2012 - 01:07 PM

Here's a different perspective. I had tons of stomach trouble as a kid from food allergies and undiagnosed celiac. (I tested negative for celiac but I was off wheat at the time.) As well as the allergic/celiac stomach trouble, I would get psychosomatic stomach-aches. The stomach-aches were plenty real - I really was in pain - but Mom noticed I was usually OK evenings and weekends and had the most trouble Mondays.

I was apparently having some behavioral problems at school too. I was a pretty anxious little kid, with some depression as well. I'm sure it was the celiac disease messing with my mind. I finally got sent to the school psychologist in second grade. My school was expecting learning disabilities but instead discovered that I was reading well beyond my grade level and was pretty much bored and miserable in class. That lead to anxiety, depression, and the stomach-aches.

I started third grade in a gifted/talented program and things got a LOT better. I stopped avoiding school and was engaged in my lessons. My parents also got me to a child psychologist who taught me some relaxation exercises I could do that would stop the stomach-aches.

So - make sure your celiac-prone kids are not anxious! Look into what they are avoiding and why!
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#799092 Weak Positive Ttg Iga

Posted by on 29 May 2012 - 09:26 AM

Are there conditions other than celiac disease that can raise Ttg IgA levels?

Specificity of TTG IgA in adults is maybe 95-98% (studies vary). Celiac is by far the most common reason for elevated TTG, particularly in people with celiac symptoms, which you have. Chronic diarrhea, bloating, and joint pain are all celiac symptoms.

Endomysial IgA does not have a terribly high sensitivity. It is around 75-80%. TTG IgA is the more sensitive of the two tests. The difference is that Endomysial IgA is specific for celiac.

Occasionally type 1 diabetes or autoimmune hepatitis can cause elevated TTG. TTG can also rarely appear in inflammatory bowel diseases like Crohn's and microscopic colitis. (Microscopic colitis can be gluten-caused; this may be a different expression of celiac disease.)
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#798588 Dow Bread Enhancer

Posted by on 26 May 2012 - 04:01 PM

It's probably some kind of methyl cellulose.

Yep, I found it. Hydroxypropyl methylcellulose and carboxymethylcellulose. They're getting the cellulose from wood so there won't be any soy in it.

This kind of stuff is basically an indigestible fiber. Nice alternative to folks like me who don't tolerate xanthan gum.
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#798187 I'm Going Bonkers Over The Diificulties Of Celiac Disease!

Posted by on 24 May 2012 - 09:10 PM

I'm sorry you're having such a rough time. Yes, schizophrenia can be caused or worsened by gluten. One of the old names for it was "bread madness".

The specialty breads are part profiteering, but they are also paying for the gluten tests, dedicated gluten-free facilities, expensive specialty flours, and the cost of shipping it a long distance often frozen. In contrast, wheat bread is made from a grain that's largely government subsidized so wheat prices are artificially low.

I had to eat cheap in graduate school. Potatoes, rice, and dried beans and lentils are inexpensive nourishing staples. Even better they're naturally gluten-free without any risk of cross-contamination. Sometimes you can get a whole chicken really cheap on sale. Add peanut butter, eggs, whatever fruit and vegetables you can find on sale. It's summer so you can even try growing some from seeds if you have a sunny spot where you can dig or put pots. You will probably have to do some cooking - it's the best way to eat cheap and to make sure your food is really gluten-free.

Like you, I can't figure out how they would get gluten in preserves so it seems like a cover-your-ass to me. As for the chips, do you have any way to watch sales or clip/print out coupons to make the name brands more affordable?
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#797921 Essential Oils

Posted by on 23 May 2012 - 06:05 PM

I agree with eating the ginger however I thought the purpose of the essential oils was because they were natural. I would never put something that had fragrance or other chemicals outside of natural ones on my skin as it would cause other reactions that I've developed to things over the years.

I think having something to take the edge off of the symptoms that is natural is fabulous. Tea is awesome for all sorts of things as well or using the two in unison could possibly help more?

Don't confuse "natural" with "safe". Hemlock is natural. ;) EOs are very unnaturally concentrated so they really bear no resemblance to anything you would find in nature. They are so strong you can flavor an entire pot of spaghetti sauce with a drop or two of oregano oil or a pie with a few drops of orange oil. There is very little safety data on medicinal use, and some oils that are commonly available through aromatherapy suppliers either carcinogenic or highly toxic taken when internally. That assumes you're getting pure oils, which is difficult to verify unless you happen to have a GC-MS setup in your living room. Many commercial oils are cut with cheaper oils or cut with cheap fragrance compounds like linalool and linalyl acetate. Let's put it this way. France exports over 10x the "pure" lavender oil it actually produces.

That's not to say that EOs aren't useful. You just have know what you're doing. Using EOs takes the same level of expertise and study as any herbal medicine.
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