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ravenwoodglass

Member Since 17 Apr 2004
Offline Last Active Today, 12:04 AM
*****

#633322 Had Appt With Gi Dr Today And Confused About Something He Said

Posted by on 20 August 2010 - 08:55 AM

While we are born with the genetic predisposition to develop celiac it can hit at any age. Usually there is a triggering event, in women that can be childbirth it can also be a severe emotional, physical stress or an illness. Some of us with the genes never develop it. Since you have been symptomatic for a year chances are that you developed it a year ago. Try not to worry too much, stay on gluten until after your endo is done and then as soon as the test is finished start on the diet. You don't need to wait for the results to begin. You can use the time before the endo to learn what you need to learn about the lifestyle and what you need to do to keep yourself safe. Do also encourage other family members to be tested.
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#633266 My Neuropathic Pain Has Disappeared!

Posted by on 20 August 2010 - 03:14 AM

Great News!!!! It's amazing how much pain can go away after we get diagnosed.
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#633075 New To The Forum And To Coeliac Disease

Posted by on 19 August 2010 - 11:19 AM

Welcome to the board and the gluten free family. If there is anything we can do to help with your transition to the gluten-free lifestyle feel free to post a question. It can be tough at first and many of us have ups and downs so do feel free to vent if you need to.
I hope you are feeling much better soon.
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#633068 Do Any Of You Wear A Med Bracelet?

Posted by on 19 August 2010 - 11:03 AM

I have one on my car key chain that lists celiac and another that states that I have a penicillin allergy.
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#633064 How Long Do I Need To Torture Myself With Gluten Before My Blood Test?

Posted by on 19 August 2010 - 10:55 AM

4 slices of bread a day for 2 to 3 months. Even then you may have a false negative. If the blood work is positive the doctor may want you to continue on gluten to get the biopsy which could also be a false negative. Only you can decide if it is worth it. If your doctor is willing to test your vitamin and mineral panels and to schedule a scan for osteoporosis without the challenge then if you have seen great results on the diet you don't really need the doctors permission to eat gluten free. It can be helpful in getting other first degree relatives to be tested, as they should, but sometimes your recovery will be enough to encourage them. Also some doctors will diagnose based on the resolution of symptoms gluten free and the reoccurance of problems when gluten is added back in. You may want to talk to you doctor about that.
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#632941 Snyder's gluten-free Pretzels

Posted by on 19 August 2010 - 04:07 AM

Well no wonder I haven't seen them yet. No whole foods here (nor Wegman's). Raven since you have bought them can you tell me if they have soy in them? The only pretzel I have found in my area are Glutino and they are made with soy flour. Trying not to get my hopes up while searching.


No they don't. Another pretzel that doesn't have soy is Wylde. If your local store can get the Glutino they should be able to order the Wylde for you. I really like the Wylde but figured I would give the Snyders a try. Both are good and soy free.
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#632639 More Testing On Tummy Problems

Posted by on 18 August 2010 - 04:31 AM

So went to the Doctor the Celiac panel isn't back yet however she told me that in the mean time to go gluten free for at 3-6 months and see how that goes. She will call me when the panel comes back to let me know what it says but she told me the same thing that I have read here in so many posts the "False negatives are extremely common" I also was diagonased with hypoglycemia which if I don't watch it will turn into Diabetes within 5 years.... just one more thing to add to the list. My fathers side is riddled with it and the celiacs would come from my moms side (so I think mom & grandma have major tummy issues) However I talked to my dad and my cousin started with hypoglycemia then turned out he has celiacs....


It sounds like you have a good doctor. If you have celiac in your family then your chances of having it yourself a pretty good. I hope you have good results from the diet. Ask us any questions you feel you need to. Although it sounds like your doctor is going to be willing to diagnose you based on family history and response to the diet do call and check that she isn't going to want you to have a biopsy. If you go gluten free before the biopsy they won't be able to diagnose you without a gluten challenge.
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#632463 Other Allergies Disappearing After Gluten Free?

Posted by on 17 August 2010 - 12:18 PM

Raven what type of allergy testing did you have done? If I were to go get an allergy test for foods what would I ask for? I used to have seasonal allergies but they were not really diagnosed. I just always sneezed and had nasal drip and itchy eyes during the high pollen season. Since going gluten free my seasonal allergies were much less this year. I still react to dust though.


The allergy testing I had was the skin prick kind. After the skin prick test the doctor immediately put me on a strict elimination diet. I really don't know if any foods were tested as the thing from the results I most remember was him saying 'Well your not allergic to beech trees'. He later said that those results made him pretty certain that I was celiac but he didn't mention it until after I had added gluten back in and had a strong reaction. He then told me that he thought I was celiac and referred me to a GI.
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#632373 Other Allergies Disappearing After Gluten Free?

Posted by on 17 August 2010 - 08:48 AM

Before I was diagnosed I was tested for true allergies. I reacted to 98 out of the 99 things I was tested for. Within a year of being gluten free my allergic reactions were down to 3 things, dogs, yew trees and cats. But the allergies are now so mild that I have no issues with having my little dog sleep with me and the cats are okay as long as they are not wrapped around my head. The yew bushes I have to avoid in the spring but as long as they are not in flower I am fine. The only food allergy I have is soy, I am also intolerant to that but that didn't develop until after I had been gluten free for a while. My allergist said that my immune system was in hyperdrive before diagnosis and that was why I was reacting to so much.
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#632315 "gluten Free Is All The Rage Now"

Posted by on 17 August 2010 - 04:19 AM

I went through pretty thorough testing and do not have the genes commonly associated with celiac, so I feel pretty confident that I'm 'just' non-celiac gluten intolerant. I think most of the symptoms that I've had resolve - the bloating, the headaches/brain fog, fatigue etc, are symptoms that I think a lot of people who don't think they have a problem with gluten find resolve when they follow a fad diet like this. Whether it's wheat or gluten, a lot of people feel better when they cut down.

But the symptom most people just doing this as a fad diet wouldn't consider but the one that interests me most is my balance problems. I have consistently failed the Romberg test (where you put your feet together, close your eyes and if you're me, promptly tip over) for years. My GP did a bunch of other neurological tests and didn't seen anything that concerned her so it didn't go any further. But in all my research I kept finding examples of people who tested negative to celiac but showed an improvement to their balance problems when they went strictly gluten free. Since eliminating gluten I get D, stomach cramps and overwhelming fatigue if I get glutened so I've been very careful and I'm confident I'm as 100% as I can be. And it's made a startling difference to my balance. A month ago I re-tried the test and I was better - and I did it again last night and was amazed, it was nearly normal.

So if 1 in 133 people have celiac, and many more know from symptoms that they are gluten intolerant and there are all those autistic kids seeing marked improvement on Gluten-free Casein-free diets and people with MS and then people like me with the balance problems... I really wonder just how many people truly are completely unaffected by gluten*?? Sure a lot of the gluten free products are a lot more refined and sugary than the originals so everyone swapping them isn't idea, but I don't think either they or the originals are vital in our diets. Bread sure is tasty but there are other more nutritious foods. It's popular because it's tasty, pretty cheap, easy to use and filling - it's not vital to anyone's diet, not like vegetables are.


What you are describing so well is gluten ataxia. Gluten can attack many organs other than the gut for years before gut symptoms show up, if they do. Doctors unfortunately don't realize this. You can be celiac with no gut symptoms and it sounds like you are someone who fits in this catagory. I think the blood test and biopsy are likely more accurate for folks that have gut symptoms rather than stuff like joint or brain impact so alot of folks that could be helped aren't.
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#632094 Anyone Immune To Poisin Oak/ivy?

Posted by on 16 August 2010 - 09:54 AM

I am not immune to either oak or ivy. When I was a kid I had it really bad, the first time was from peeing in the woods :ph34r: I was about 7 or so and was embarrassed to tell my Mom but when it got infected she noticed my 'funny walk' and we made a quick trip to the doctor. It was about the same time that I started getting DH outbreaks on my arms and legs and the doctor told my Mom the DH was 'poison ivy in my bloodstream' to explain why I had it all year round. The worst cases of poison ivy that I ever had was when I got it a couple of times on top of the DH sores. Now that was agony. I've learned to be real viligent in the woods and also to never stand in the smoke from a campfire.
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#631895 Gas On My Date...why? ;)

Posted by on 15 August 2010 - 01:02 PM

I thought all distilled alcohols are gluten free?


Many of us can drink them safely and do so but there are some of us who do get a gluten reaction from them. Don't know which group you fall in.
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#631883 Gas On My Date...why? ;)

Posted by on 15 August 2010 - 12:18 PM

Despite the fact it is distilled the Jack would have gotten me. You could also have gotten CC'd somewhere along the line. If your not having other gluten symptoms you could also have just gotten gassy from the onions and garlic. You may never know and if you don't have any of your other glutened symptoms I wouldn't worry about it.
Sounds like it was a nice night and glad you and this lady are still seeing each other. It sounds like things are going well, your gluten anxiety aside.
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#631829 What Is Your Response When People Say.....

Posted by on 15 August 2010 - 07:22 AM

Holy cow I can eat movie popcorn??


In a lot of theaters yes. One of my best finds since I started going out to movies again was that my local theaters popcorn was safe. Just went on a slow day and asked to see the ingredients of the flavored oil they use and they were happy to comply.
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#631804 Gluten Free Cooking...what Kind Of Cookware?

Posted by on 15 August 2010 - 04:42 AM

Go with the stainless steel. Cast iron will absorb stuff. Get the best stainless you can afford and it will last a lifetime. I am still using the stuff my Mother-in-law gave me for my wedding. I just cleaned it real well after diagnosis and it has outlasted the marriage. I also use teflon coated pans for some stuff but I got new ones of those. For baking I use a good quality ceramic or glass with the exception of cookie sheets and cupcake pans.
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