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Member Since 17 Apr 2004
Offline Last Active Today, 02:41 PM

#869704 Lost A Parent To Celiac

Posted by ravenwoodglass on 20 May 2013 - 02:55 AM

So sorry to hear of your loss. I think there are likely many of us who have lost parents to causes that may be linked to celiac. I lost my Mom young to cancer and lost my Dad last month. Since I have two copies of the same celiac gene both of my parents also had that gene. My Mom undoubtedly was an undiagnosed celiac. Her symptoms were the same as mine became before diagnosis. She also suffered for years. When I got my Dad's death certificate I found that he had bled to death from a GI bleed. I don't know if blood clots are associated with celiac but kidney issues can be.

I do know that my GI doctor told me that if I hadn't been diagnosed when I was I would have been 'one of those celiacs diagnosed by autopsy.

I know you are suffering and nothing any of us can say will ease your pain. Know that you are in my thoughts.


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#868201 Rheumatoid Arthritis Other Symptoms And Celiacs

Posted by ravenwoodglass on 12 May 2013 - 05:53 AM

My RA has been in remission since a few months into the gluten free diet. For complete relief I found I also had to drop soy but that may not be the case for you. I was also prescribed the same drugs you were (and loads more!} and found them not to help at all. I hope you get some relief from the diet but it can take time.

If you need a diagnosis of celiac to keep you strict on the diet do keep on the gluten until after you are done testing.

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#868199 "people With A Preexisting Condition"

Posted by ravenwoodglass on 12 May 2013 - 05:46 AM

If you are continueing to get glutened, which is the impression I got from another of your posts, your body is going to be so busy fighting the gluten that it won't be able to fight off other stuff.  I have worked in schools and with the public for years and I used to catch everything that was going around pre gluten free but very rarely get ill now. That may off course not be the case for you.

Do what you can to prevent picking up these 'bugs'. Wash your hands a lot and keep them away from your face as much as you can. Hopefully your body will be better able to fight off communicable illnesses once it has healed from gluten.

As far as getting a flu shot talk to your doctor about any concerns you have and then make a decision on whether or not to get one.

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#858356 Lab Test Results-Frustrated

Posted by ravenwoodglass on 13 March 2013 - 08:01 AM

Since the doctor has already confirmed that you likely have had celiac for years you might want to call and have a nurse ask him, or get a call back from him yourself, getting permission to go ahead and start the diet.

As far as this supplement is concerned IMHO it is too expensive for the vitamin levels it provides. We often need more than they contain. It is a good idea to have your doctor do testing of your vitamin and mineral levels and supplement those you are deficient in with larger doses than this very expensive product provides.

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#857417 18M Old - With Genetics Against Her

Posted by ravenwoodglass on 07 March 2013 - 01:49 PM

The low vitamin D is no surprise if she is celiac or gluten intolerant.

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#856878 18M Old - With Genetics Against Her

Posted by ravenwoodglass on 04 March 2013 - 06:19 AM

What would get to me the most is her wanting your child to suffer for another 2 months before she will do an endo. You and your little one have been suffering for so long now. I hope you can get answer's soon and that the testing for celiac takes place soon. Then you can give her a trial on the diet and see if that gives her some relief.

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#855724 18M Old - With Genetics Against Her

Posted by ravenwoodglass on 25 February 2013 - 06:16 AM

The one thing that does jump out at me from her food intake is that is is quite gluten heavy. I hope they figure it out soon but if they don't it sure won't hurt to have her on the gluten-free diet for a couple months. The only thing that will impact is testing for celiac which at her age has a high chance of a false negative anyway. But I am sure you know that already.

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#855517 Do You Have To Have "specific" Celiac Genes?

Posted by ravenwoodglass on 23 February 2013 - 10:15 AM

I have had DH since childhood and although it was a long road was finally firmly diagnosed celiac about 10 years ago. I don't have either of the two most commonly associated 'celiac' genes either. Gene testing is IMHO interesting and can be helpful but is not the be all and end all of celiac diagnosis. Whether you are labeled celiac or gluten intolerant the script is the same. Lifelong adherence to the gluten free diet. Glad to hear you are feeling better and I hope you continue to improve.

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#854996 (16 Mos Old) Introducing Gluten Back Into Diet For Testing, Potential Hospita...

Posted by ravenwoodglass on 20 February 2013 - 11:43 AM

With the reactions this little guy has it is inconcievable to me that a doctor would want to do this to him. Can you find another doctor with some common sense who might give you an 'official' diagnosis based on his symptoms and the resolution of them on the diet? There is no way I would do this to my child but ultimately the choice is yours alone to make. Do keep in mind that even after the challenge he may have negative test results. Ask yourself what you will do if that happens. Will you put him back on a gluten diet? If the answer is no then I would tell the doctor to take a long walk off a short pier.

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#849093 Well, Results Of Genetic Testing In...

Posted by ravenwoodglass on 18 January 2013 - 06:20 AM

There are more genes associated with celiac than just the ones for which they usually check. What tests were done that gave you the probable celiac diagnosis? If you are doing welll on the diet don't let the negative gene panel stop you from sticking with it. Your body's response is at present the best diagnosis we have.
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#848138 What Tests Should I Do From Enterolab?

Posted by ravenwoodglass on 12 January 2013 - 06:47 AM

Thank you so much for responding! I will be following your advice and going to doctor first. I'll also be bringing my mom in so she can testify for all my symptoms. The list is long, but one that's really scary and I feel that it is somehow related is that I feel a mass in my lower right abdomen-kinda near my belly button. I've had it for about 4 years now or more. I also feel my most annoying symptom is my itchy skin that welts up after scratching with little bumps. I also get like little pimple looking things, but they're filled with clear liquid...so I was thinking maybe DH? ahh, sorry. I've pretty much been nicknamed the sick girl....my brother used to call me Melman-the giraffe from Madagascar. Lol.
Once again thank you so much! I hope my doc will run those tests for me. :) Enterolab is pricey, but Im so desperate....but doc first!

With the skin issue you could see a derm. But do make sure they are familiar with DH. They need to biopsy next to an active lesion and do a particular test for it. A diagnosis of DH is a diagnosis of celiac. You would need no further testing for celiac if that is positive.
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#847947 What Tests Should I Do From Enterolab?

Posted by ravenwoodglass on 11 January 2013 - 05:54 AM

You should have your doctor run a full celiac panel first IMHO. There are false negatives but they have newer tests that are a big improvement over the ones we had even 10 years ago. Make sure they do the total IGA and the DGP tests. If you go with Enterolab order what you can afford. I did Enterolab (back when you could still order from my state) because I was still having issues post celiac diagnosis and wondered if I had another intolerance. I did, so if you can order the tests for other intolerances as well as gluten.
Not all doctors will take Enterolab testing seriously so it may not give any 'proof' to yours. If your doctor refuses to do a celiac panel on you then you may want to find another doctor.
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#845663 Celiac Vaccine? Not For Me

Posted by ravenwoodglass on 30 December 2012 - 04:32 PM

Wouldn't want a vaccine. Don't really understand how they can do a 'vaccine' for an autoimmune disease. Celiac isn't something that is caught like the measles, mumps or polio. I also almost died before I was diagnosed and there is no way I would ever injest gluten again. I would hate to be a celiac in the placebo group for the clinical trials.
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#844818 Insane Detox?

Posted by ravenwoodglass on 24 December 2012 - 05:39 AM

You could be detoxing but you could also be getting CC somewhere. We do often become more sensitive to very small amounts of gluten after we are gluten free. Make sure you are doing everything at home to make sure that you are safe and since you are experiencing skin issues do make sure all your shampoos etc are free of gluten. Welcome to the board and congrats on the migraine issue. I suffered from them also for many years but not as badly as you did. It is quite a relief when the pain stops.
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#839344 Repercussions Of Cheating! :(

Posted by ravenwoodglass on 27 November 2012 - 02:59 PM

I ate gluten because I had nothing else.

I am on food assistance. I NEVER like to admit that.

We always have to make sure we have something safe with us. Whether it is an apple, a baggie with Snyder's gluten-free pretzels and raisens with some chocolate chips tossed in, some cheese and a baggie of crakers, a banana or a gluten free cookie or whatever you like that is portable it is very important to have something safe on hand for the times when those around us just have to go eat somewhere we can't. Or make sure you eat at home before you go rushing out the door.
If you have a food pantry near by let them know you are gluten free. They can give you rice instead of pasta and some may even sub in more fruits and veggies for the stuff like the soup and pasta that they might normally give out. If you haven't already checked to see if your town has one do so. No one likes to go to them but they can make a big difference.
It is hard when our food budgets are so limited. Many of us here struggle also. If you haven't done a lot of cooking it can be hard at first. Go for simple stuff. I eat a lot of rice, ground beef, chicken, frozen veggies and fruits and beans. Some of the easy stuff that is quick are many prepared pasta sauces, Minute Rice, Dinty Moore Beef stew, most sandwich meats etc are all examples of everyday non-specialty (read not expensive) foods that are safe. For your favorite stuff that you already use just stick the name in a search engine with the words 'gluten free' and many times the companies gluten statis will show up. Do check out the recipe section.
I am glad your latest reaction has convinced you to stick to the diet. Your kids need you and you need you to be healthy.
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