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Does it really matter if you have Celiac or "just" an intolerance?

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Old 01-13-2014, 03:27 PM   #1
ifthespiritmovesme
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Default Does it really matter if you have Celiac or "just" an intolerance?

I went gluten free in April 2013. Daughter went GF in hopes of alleviating digestive problems and recommended it to me 2 weeks later, she was so improved.

I requested to be tested for Celiac. Don't know what test was done, but my doc said I don't have Celiac. I have not had a biopsy done, and really don't want one.

Within 10 days of going GF, there was marked improvement in my chronic pain, energy level, and stiffness! I was experiencing restorative sleep for the first time in decades. Also, B-12 levels have skyrocketed.

Not all my problems are relieved, so there is more to be investigated, but the bottom line is that I cannot eat gluten!! If I slip up and indulge in something containing gluten, I will FEEL it within 3-4 hours, and it will stay with me sometimes a day or 2. The effect on me is an increase in myofascial pain and stiffness.

To me, it doesn't matter if I have Celiac or not - the treatment is the same, right? I just can't eat gluten. Do I need to find out if it's Celiac?
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Old 01-14-2014, 03:11 PM   #2
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Welcome to the NeuroTalk Support Groups.

I have limited knowledge I'm sorry, but hopefully someone will respond to your questions soon.
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Old 01-14-2014, 03:34 PM   #3
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Welcome to the NeuroTalk Support Groups.

I have limited knowledge I'm sorry, but hopefully someone will respond to your questions soon.
Thanks, Lara. Actually, I have another post in the Autoimmune Forum that is much more important to me, but have had no replies help with. Is this board usually so "quiet"? Do you know of anyone here who is knowledgeable about thyroid that you could ask to look at my post there about Hashimoto's? I'd sure appreciate it.
Thanks again for the welcome!
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Old 01-14-2014, 03:35 PM   #4
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My drs were convinced that I had celiac. I have been tested several time and the results were always negative. My primary dr and I decided that I should try going gluten free so I did. I did this several years ago and noticed much improvement. I removed gluten 100%...EVERYTHING I use is GF, toothpaste, medications, soaps, lotions, make up, shampoo, hair products, etc. You need to make sure you are doing this as well otherwise you are not truly gluten free. Some say that using gluten containing products topically is fine, you will not react to it. I do not believe that at all because I break out in a terrible rash if I use something containing gluten on my skin. I think they say 60% of what you put on your skin is absorbed...seems to me that would cause a reaction.

I know that in order to be tested for celiac, you cannot be gluten free. You have to be ingesting gluten for the results to be more accurate, not sure that is worth going thru all the pain and aggravation for a test. It is great that you have found some relief!!

Good luck,
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Old 01-14-2014, 04:00 PM   #5
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Thanks, Lara. Actually, I have another post in the Autoimmune Forum that is much more important to me, but have had no replies help with. Is this board usually so "quiet"? Do you know of anyone here who is knowledgeable about thyroid that you could ask to look at my post there about Hashimoto's? I'd sure appreciate it.
Thanks again for the welcome!
Some of the separate forums here get quiet from time to time. Others are extremely fast. Depends. Hopefully someone is able to help you in the Autoimmune Forum soon.

Don't forget to check out The Gluten File, which is listed at the top of the page here in the "Stickies". It's an invaluable resource and set out so well it's really easy to navigate.

The Gluten File
http://neurotalk.psychcentral.com/thread1872.html

more here too

Useful sites and resources
http://neurotalk.psychcentral.com/thread1121.html
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Old 01-14-2014, 04:10 PM   #6
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My drs were convinced that I had celiac. I have been tested several time and the results were always negative. My primary dr and I decided that I should try going gluten free so I did. I did this several years ago and noticed much improvement. I removed gluten 100%...EVERYTHING I use is GF, toothpaste, medications, soaps, lotions, make up, shampoo, hair products, etc. You need to make sure you are doing this as well otherwise you are not truly gluten free. Some say that using gluten containing products topically is fine, you will not react to it. I do not believe that at all because I break out in a terrible rash if I use something containing gluten on my skin. I think they say 60% of what you put on your skin is absorbed...seems to me that would cause a reaction.

I know that in order to be tested for celiac, you cannot be gluten free. You have to be ingesting gluten for the results to be more accurate, not sure that is worth going thru all the pain and aggravation for a test. It is great that you have found some relief!!

Good luck,
Nanc
Hi Nanc - Thanks for responding! I know about not going GF for testing. After 4-5 mo. GF, I went back on it for the test for 3 miserable weeks. Near the end of 3 wks. I got REAL sick with a Noro-virus and thought I was going to die. I at first thought it was because of eating gluten again after being off it, and was freaking out. I won't eat it again for any test- just causes me too much pain.

My meds are GF, I have NO gluten containing foods in my house, but haven't explored the bath and beauty stuff. I even avoid the bread, pasta and cereal aisles in the grocery stores. I make my own soap, so that's not an issue. I know of GF toothpaste I can get, but how can you check for gluten in shampoos and cosmetics? I rarely wear makeup, but do use anti-aging creams, etc. Can you suggest some brands or products for me to check out?

Again - thanks so much for your reply!
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Old 01-14-2014, 04:12 PM   #7
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Thanks for the links Lara! Going there now..
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Old 01-14-2014, 04:15 PM   #8
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I just wanted to also leave this which is in The Gluten File. It may be of interest to you...

https://sites.google.com/site/jccglu...thyroiddisease
Autoimmune Thyroid Disease
The Gluten File
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Old 01-14-2014, 04:43 PM   #9
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Very good!
Yeah, I am thinking a lot of my probs. are related.
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Old 01-14-2014, 05:15 PM   #10
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Hi Nanc - Thanks for responding! I know about not going GF for testing. After 4-5 mo. GF, I went back on it for the test for 3 miserable weeks. Near the end of 3 wks. I got REAL sick with a Noro-virus and thought I was going to die. I at first thought it was because of eating gluten again after being off it, and was freaking out. I won't eat it again for any test- just causes me too much pain.

My meds are GF, I have NO gluten containing foods in my house, but haven't explored the bath and beauty stuff. I even avoid the bread, pasta and cereal aisles in the grocery stores. I make my own soap, so that's not an issue. I know of GF toothpaste I can get, but how can you check for gluten in shampoos and cosmetics? I rarely wear makeup, but do use anti-aging creams, etc. Can you suggest some brands or products for me to check out?

Again - thanks so much for your reply!
Sorry you got so sick! Glad you know about the testing, I did not know about that until I went to a new gastro dr for testing. He said at that point there was no need to test me, if I was feeling better off gluten, just keep going with it. I was fine with that. When I get accidently glutened, it is not pretty! My husband is not GF, so there is gluten in our house. It is way too expensive for our house to be completely GF. I have RSD and many other issues, I cannot prepare meals very well. He can only use one hand/arm, so he doesn't cook either. We are VERY careful not to cross contaminate, his food is separate from mine, I have a separate toaster, colanders, etc.

As far as bath and beauty products go, I have searched online and found a lot of info. There are some lists online that lists names of ingredients that you need to also look for...I will look for those for you. The Body Shop has a GF list that they will email you if you request it. If there is not a store near you, they do have a website. The shampoo I use is DermOrganic, it is labeled as GF. You can find it online or at Ulta. I found a huge bottle of it at TJMaxx for $19.99 and the first bottle I bought at Ulta was $18.99 for 1/3 the size! If you are near a Whole Foods, they have a lot of GF products in their cosmetic dept - lotions, creams, shampoos, hair styling products and the staff there is so helpful! I use either Peter Rabbit or California Baby body lotions (baby lotions) because they are more gentle and I am also allergic to shea, as well as some other ingredients. I find them at Whole Foods and Target.

I do not wear make up any longer, too hard to apply with RSD in my hands. It amazes me that gluten can be in everything though!!
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