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ravenwoodglass

Member Since 17 Apr 2004
Offline Last Active Today, 03:22 PM
*****

#626420 I Need Some Help With This One Y'all

Posted by ravenwoodglass on 25 July 2010 - 06:29 AM

As someone who has been fighting serious agoraphobis now for a year and a half I have to agree with the little baby steps at first. That's how I have come along the best. Another thing you may want to consider is asking your doctor if it is okay to take a half a valium before you do something that has brought these attacks on. That's called propholactic (sp) use and is how I have been able to go back to college and now most days I can either go without it or only take a quarter tab before I leave for class.
I take alprazolam and when I first started this fight back into the world my doctor told me to take half a one with me (in the script bottle of course) and when the attack would start to put it under my tongue. It would then go very quickly into the bloodstream and directly to the brain. Please ask your doctor if the valium would work the same way before you try it and be aware it will taste awful.
Also have you made sure the valium your taking is gluten free? Here one dentist kept giving me the generic form, or tryed to anyway, and it wasn't gluten-free. Only the name brand was but it was very expensive. That's why my shrink uses the alprazolam for me, in that case the name brand, Xanax is not gluten free but the generic is. If you have gluten issues the Valium may help with the symptoms when you take it but if it is a form that is not gluten free it will keep the process going.
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#626230 Label Says Wheat But No Reaction?

Posted by ravenwoodglass on 24 July 2010 - 03:22 AM

I am a firm believer that Celiac can go into remission and then appear when you let you guard down. So please choose carefully. ;)


This is found in some young people and doctors call it the 'Honeymoon Effect' and it is why they used to think kids would outgrow celiac. However, and the however is a biggie, they now know that celiac can not be 'outgrown'. The symptoms may lessen but damage is still being done. GI symptoms may seem to resolve but the autoimmune attack will continue sometimes working on different organs like the brain and liver. IMHO playing with not being gluten free after a firm diagnosis is playing with fire. Eventually you will get burned and when you do it may be in a way you can't go back from, like lymphoma.
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#626229 Really Interesting Results From Avoiding Gluten

Posted by ravenwoodglass on 24 July 2010 - 03:12 AM

The villious atrophy is the gold standard for celiac diagnosis, you are diagnosed no matter what the test results say. As for the little ones, I do wish you had their blood tested before going gluten free. They both clearly have have had positive results with the diet and slip ups have shown the issues returning. Talk to your ped and let the ped know that you have been diagnosed. The ped may want them to do a gluten challenge for the blood testing but the chance of a false negative with kids is pretty high even on a full gluten diet. If you do have them tested I would get them back on the diet no matter what the results.
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#626224 Wait, What? Can A Doctor Suggest Celiac Base On This?

Posted by ravenwoodglass on 24 July 2010 - 02:54 AM

The three tests you have posted are within the reference ranges. That means the results are normal. Where is the elevated tTG IgG that your doctor is referring to? That would be a sign of autoimmunity.


That was posted in this thread

http://www.celiac.co..._0
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#626034 Wait, What? Can A Doctor Suggest Celiac Base On This?

Posted by ravenwoodglass on 23 July 2010 - 11:03 AM

*** Reposting due to error in first posting - I didn't understand results***

Hi, I went gluten free five years ago after two decades of gastro issues, chronic infections, etc. I had a biospy done after going gluten-free and the results were negative. I've also had enterolab run my genes and those showed gluten sensitivity genes but not Celiac, so I've adhered to my gluten-free diet knowing I can't eat it whether or not I have Celiac Disease.

My doctor doesn't usually push tests on me but the other day he said he wanted to run a Celiac Panel. This is after five years of gluten-free (although I know it sneaks it's way it here and there by accident only). Anways, I argued that it was a waste of time but he pushed for them anyways. Yesterday he emailed me with this:

"The results do suggest Celiac. The TTG IGA would be elevated if you eating foods that stimulate the immune system, but would be negative with a gluten free diet. The tTG IgG indicates that your body has been stimulated in the past. So, since you are on a gluten free diet, we expect the IgA to be negative."

Here are the actual results:

TTG Antibody, IGA <3 (Reference range negative <5)
Endomysial Antibody (IGA) - negative
Immuoglobulin A 381 (81-463)



Can he really diagnose based on my Immuoglobulin A results? Can't they be elevated for other reasons? I'm so confused because the results are still in range. Any explanation could really help.

To reiterate I will continue a gluten-free diet, I don't care whether I actually have Celiac. However, I would like to understand this test better.

Thanks!

Immuoglobulin A 381 (81-463)

This is your total IGA. That is in normal ranges which means if your original tests at diagnosis showed an elevated IGA in the celiac tests then yes that would be diagnostic. That the numbers have gone down to normal levels would show that you are doing well on the diet.
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#625483 News Story: "gluten Free" Foods May Be Contaminated

Posted by ravenwoodglass on 21 July 2010 - 09:26 AM

That study just confirmed what I already knew. I am pretty reactive.


Ditto.
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#624597 Elimination Diet - Help!

Posted by ravenwoodglass on 17 July 2010 - 03:18 AM

I am going to advise you to find an allergist who will guide you through the process. When calling ask if they help with elimination diets as not all do and you don't want to waste your money and time with appointments with ones who won't. The allergist will take an history of what you diet typically includes and will give you the best starting point for you. The starting point will be designed so that you have the nutritional and caloric needs fulfilled. It is not easy to do one on your own. After a week or two on the prescribed diet you will begin adding stuff back in for a week at a time in single ingredient form. It really is the best way to go although it is a process. The allergist will have you call the office and report your progress on a weekly basis and mine had me call and report any adverse reactions immediately.
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#624142 Dr Issues

Posted by ravenwoodglass on 15 July 2010 - 03:08 AM

You are in a very hard spot and you have my sympathy. You have to go back on gluten to be tested and you would have to find a doctor willing to test.
It sounds like your best option is to just continue the diet at least until you are out of school and able to find work and live in an area where you can find a new and more knowledgable doctor.
I wish I could give you some more helpful advice but to be tested you need to redamage your body, not an option that is a good one when you are actively pursuing a degree.
Do you have Thai Kitchen noodles available there? With those and some gluten free broth and some veggies at least you would have a healthy alternative to the Ramen noodles.
Ask some questions here about how us folks with limited funds manage food wise. You should find lots of replies with good and workable ideas for you.
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#624053 Am I Gluten Or Diary Intolerant?

Posted by ravenwoodglass on 14 July 2010 - 01:38 PM

The first thing you need to know is that if you are gluten free you can't be tested for celiac. You have to be eating gluten. What that means is if you go gluten free and feel better but you still feel you need a diagnosis you will have to go back on gluten for 2 to 3 months. If your body wants to be gluten free those 2 or 3 months will be miserable months.
That said you don't need a doctors permission to be gluten free and it may well help your problems disappear. If you want to do a trial of the diet you have to be strict. It would be a good idea to read as much as you can here and when you go gluten free you should also give up dairy for at least a couple months. After you have been feeling good for a while then you can challenge dairy starting with hard cheeses like cheddar and yogurt. It is also a good idea, as the other poster stated to go easy on soy at first. Start out with whole foods and leave the specialty gluten free stuff alone at first.
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#623411 You Should Stop Calling Gluten Intolerance A Disease

Posted by ravenwoodglass on 12 July 2010 - 02:33 AM

Life is full of individual choices. I don't think what a individual chooses to label themselves, whether diseased or different, should be a subject for argument. No matter what the label all here know the serious repercussions of injesting gluten on our bodies. If one person is more comfortable thinking of themselves as diseased and another is more comfortable thinking of themselves as different then that is their personal choice and both IMHO should be respected.
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#622358 Contradicting Results

Posted by ravenwoodglass on 07 July 2010 - 03:55 PM

Boy can I identify with your post. I am a text book firmly diagnosed celiac. I had the blood tests more times than I can count. It took literally 15 years after the worst of the symptoms set in before I was diagnosed because I also show negative on blood tests. Why I don't know but lots of us do. Just listen to your body and by the way the tests for celiac will be negative if you are gluten free. If the tests he is doing are the gene panels do be aware that you can still be celiac even without one of the two most common genes. I am one of the folks that is living proof that you can be celiac and not DQ2 or DQ8. You are diagnosed. Now you can heal and get your life back.
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#622005 Post Diagnosis

Posted by ravenwoodglass on 06 July 2010 - 10:09 AM

Thank you! I've got the multi sorted out. I've been taking Nature's Plus Source of Life (iron free version) for the last 3 years. I'm not going out on a limb when I say this is the very best multi out there. It's a bit pricey, but well worth it. And gluten free! I haven't even had a cold in well over two years. Any recommendations on a good fish oil suppliment?


Just a quick note, do make sure that the one you take doesn't contain barley grass or wheat grass. Those are considered gluten free but many of us react to them. Especially if your new to the diet it is best to avoid those in juices or supplements.
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#621828 Post Diagnosis

Posted by ravenwoodglass on 05 July 2010 - 02:57 PM

Thank you! I'm actually most worried about my overall brain function. Its a real dissapointment that my body has changed so dramatically over the last couple years but truthfully, I can't see a future for myself without total and complete restoration of my mind. Without that, my intestines and body don't mean much at all.

I'm staying positive, and I'm very grateful to have found this website and everyone here.


Please do stay positive. It may take a while but your brain function should return to at least almost normal levels. Before diagnosis my brain was fudge, if you held up a fork I couldn't tell you what it was. My memory was so bad I couldn't even read anymore because I would forget a sentence as soon as I read it. It took a while but my brain actually functions now. Not only can I read but I can also remember what I read. I have even gone back to school to finish off the last couple of classes I need for my degree. If I could recover anyone can. It just takes time and being strict with the diet.
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#621772 Got Glutened But Can't Figure Out From What

Posted by ravenwoodglass on 05 July 2010 - 10:49 AM

Many of the McCormicks seasoning mixes have gluten. I would read that back panel next time you are at the store. The ones that don't have wheat could also be CC'd in the plant. Airborne wheat in those places would be IMHO a danger no matter how well the lines are cleaned. I use their single ingredient spices with no issues but avoid the mixes. You can always use the same single ingredient spices for the taco seasonings. If your not sure what to use just carry a packet over to the spice aisle and match them up.
It sounds like you are pretty familiar with your gluten symptoms and if they include neuro symptoms it is unlikely you have a bug.
All in all there were a lot of places gluten could have snuck in. I hope your feeling better soon.
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#621615 Post Diagnosis

Posted by ravenwoodglass on 04 July 2010 - 03:59 PM

Welcome, Things will get better. It can take some time to heal so try to be patient with your body. Your in the right place to learn what you need to do to heal and to keep yourself safe. Many of us do go through a bit of withdrawl and it can take some time to ferret out all the places gluten can be. Some sublingual B12 may help a bit with healing the memory issues. A good gluten free vitamin supplement is also a good idea.
Ask any questions you need to and I hope you heal soon.
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