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ravenwoodglass

Member Since 17 Apr 2004
Offline Last Active Today, 04:10 AM
*****

#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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#631720 I'm So Sick Of This

Posted by on 14 August 2010 - 03:12 PM

I had the endoscope and colonoscopy done yesterday, they found I had Gastritis biopsied ,found congested mucosa in the sigmoid colon(nonspecific finding) this was biopsied, Diverticulosis in the ascending colon, the ileum, rectum decending colon,transverse colon ascending colon are normal looking, all were biopsied, normal looking duodenum biopsied and the z line was regular. Also my tonsils are enlarged for some reason maybe thats what was causeing the thought sensation.

My anxiety/ panic attacks have been a level 10, the doc put me on zyprexa and 1 mg of adivan

So I guess it will be a week or so of waiting for the results.


I am glad you got through everything okay. Keep in mind that any celiac testing will likely be negative if you have been gluten free. I hope the results of all the tests are good and that you are feeling better soon.
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#631718 "But You Can Eat Whole Wheat, Right?"

Posted by on 14 August 2010 - 03:06 PM

Here is a conversation I had with my Dad's sister. She's supposed to be a nurse...and supposedly the smart one?!?

ME: I can't eat anything with wheat in it...

HER: Oh. So you can only eat White bread? (I HATE THIS LINE!!!)

ME: No. White bread is just bleached wheat. I can't have any wheat at all...

HER: OK...So how bout this cake mix? *holding up a box of regular betty crocker cake mix*

ME: No. Not that either

HER: Oh. Well, You can still eat Ravioli out of the can right? Or spaghetti from a box?

ME: NO. I have to eat special spaghetti, regular pasta is made from wheat...

HER: Ok. I got it. So you can eat Kraft Mac and Cheese Right?

ME: *head palm* No.



Needless to say I NEVER let her cook for me....


I guess she slept through her nutrition classes. Wow I can't believe a nurse could be that clueless, scarey.
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#631717 What Is Your Response When People Say.....

Posted by on 14 August 2010 - 03:03 PM

I would say 'Yea it could be worse, I could be one of the celiac's diagnosed by autopsy' I must give credit to my current GI for that comment spoken when he found out how far advanced I got before I was diagnosed.
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#631628 Do You Think My Asian-Adoptive Child Could Have Celiac?

Posted by on 14 August 2010 - 04:54 AM

Thanks for this advice, all.
I have a dermatologist appointment for her already set. I plan to have her go to a gastro ped. dr. as well.
Hopefully we can find out if she has this or not.

Thanks again for taking the time.
I was very interested to hear about celiac in Japan.
We lived there for a few years.
My daughter is actually from Central Asia though.

I"ll let you all know how it goes.

Thanks again.
I think we're on the right path to pursue this.


I just wanted to add a note on the gene testing. Although I am caucasian the double copies of the genes I carry are genes that are associated with celiac in the Far and Middle East. If you chose to do gene testing make sure they are not just looking for DQ2 or DQ8 as she may not have either of those. Her symptoms sound similiar to the ones I had as a child and my DH was misdiagnosed as 'poison ivy' for most of my childhood and then as atopic dermatitis as an adult. Make sure the Derm knows to biopsy next to the lesion and not the lesion itself. Excema is also associated with celiac so even if it is that it may resolve on the diet. My DD had that. After you are done with all testing do give the diet a good strict try for her. Although many think that celiac is not as prevelant in people of Asian background it is becoming much more common as their diet is being 'Westernized'.
I can't stress this enough, please do be sure to try the diet with her after all testing is done as false negatives are common especially in children.
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#631626 Formal Diagnosis: Is It Worth It?

Posted by on 14 August 2010 - 04:30 AM

I agree you are already diagnosed. Make sure your PCP does vitamin and minerals levels and you can get another celiac panel done in 6 months or so to see if your antibodies are going down. You should also get a scan for osteoporosis, although this test is primarily done on women men with celiac are at risk for bone loss also. If you do show signs of osteoporosis or osteopenia, it's precursor increase your calcium and vit D as that will help it and should be the first step before you take any of the bone building drugs.
If you continue to have issues or other ones appear you can always go back to the GI and get scoped in case anything else is going on. Being gluten free will not effect testing for other problems.
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#631547 Is This Celiac Disease Or Gluten Intolerance Or Something Else?

Posted by on 13 August 2010 - 04:29 PM

Thanks to all of you who have posted your thoughts in this thread. And yes, the thought of a "gluten challenge" does induce a certain amount of queasiness, based on recent SEVERE pain and problems after enjoying a carrot cupcake and, the week before, some pizza!

Have kept a journal for years that substantiates the growing suspicion (conviction?) that either wheat or gluten induces A LOT OF PAIN & PROBLEMS. It's just so hard to accept a future without pizza (somehow, it seems to be THE hardest gluten-laden food to relinquish!). However, last week we found a pizza that is "almost" as good as gluten-loaded pizza. Some of you may have already found and enjoyed it. It is by Glutino (their gluten-free breads are good, too); the one I tried was their "spinach and feta" model. I added some gluten-free pizza sauce, mushrooms and black olives and sprinkled a bit of fennel (the spice that's in Italian sausage) on it, and then followed their baking instructions. Surprisingly good!--albeit a bit pricey. I think it cost $5-something at Whole Foods. It really was more like a pizza-COOKIE, based on the small size. But it was tasty, actually SATISFIED my craving for pizza, and the crust was NOT BAD AT ALL. So maybe there is hope! :-)


I love pizza and have it about once a week. I get Kinnickinnick pizza crusts at a package of 4 for about 9 bucks. I add my own cheese and whatever toppings I want. The crusts are nice and much like the crusts I remember from my gluten days. If I am feeling like taking the time and want an awesome deep dish I get Gluten Free Pantry's French Bread mix and follow their directions to make it as a pizza crust. I usually chill it for a bit before I spread it. A real treat when I have time.
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#631514 I Think This Is Bigger Than Me Right Now.

Posted by on 13 August 2010 - 01:35 PM

Gosh, just read that again and it sounds so depressing, I'm so sorry! I meant that recognizing this helped me understand some of my feelings about food lately, if that makes sense. I'm quite angry with food, I think.


Don't get down on yourself. There is nothing to apologize for. There is a greiving process that many of us go through when we are struggling with this diet in the beginning. You have a right to be angry and to be sad also. You'll get through it in time and you are in a great place to vent those feelings.
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#631509 More Testing On Tummy Problems

Posted by on 13 August 2010 - 01:25 PM

Glad they got the results so quickly for you. Did they give the results to you? One thing you do want to keep in mind is that false negatives are not uncommon. When you are done with all testing do give the diet a good strict try no matter what the results.
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