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Omg...i Might Be On To Something

Rachel--24

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rinne Apprentice
rinne
Posted
The combination that I have is consistant with the Celiac disease and the neuro symptoms that I have (neuropathy and anxiety). At least it makes sense to me.

That's very interesting, I have been thinking that anxiety rises if there is inflammation in the body and with untreated Celiac there is inflammation.

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
Am I the only one that doesn't appreciate being well endowed? <_<:blink::ph34r:

I'm really late on this discussion, aren't I? :(

I used to joke that I couldn't go jogging when I was breastfeeding 'cause I'd give myself a black eye (or two).

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I used to joke that I couldn't go jogging when I was breastfeeding 'cause I'd give myself a black eye (or two).

:lol::lol:

There is no such thing as coming in too late on a discussion in this thread. :D

CarlaB Enthusiast
CarlaB
Posted

I have seen people with just one ... I can't remember when and I didn't have my kids genetically tested. Since people with severe symptoms are more likely to be tested and symptoms are more severe with two genes, I would bet that many around here have two.

I believe, and I'm going on memory here, that Enterolab has said that somethingt like 30% of the population has at least one celiac/gluten sensitivity gene.

Fiddle-Faddle, oh, can you imagine the PAIN? Ouch, they're so heavy while nursing, I can't imagine running!!

AndreaB Contributor
AndreaB
Posted
I'm really late on this discussion, aren't I? :(

I used to joke that I couldn't go jogging when I was breastfeeding 'cause I'd give myself a black eye (or two).

:lol::lol::lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I have seen people with just one ... I can't remember when and I didn't have my kids genetically tested.

Ok...I was wondering about this for a long time. I've never seen anyone on this board or on the other board that has just one gene....even the people who get their entire families tested....they all have 2 genes but not everyone is sick. :huh:

If you say you've seen it....I will put it to rest. ;)

happygirl Collaborator
happygirl
Posted

x

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AndreaB Contributor
AndreaB
Posted

Laura,

If I could be there in five minutes I would be. :D That's sounds like a wonderful spread....even with the dairy.

That is so nice of your friends to send you roses!

Hoping your challenge goes well and you don't get real sick.

Haven't heard from Evie so I assume she's in the hospital. :(

dlp252 Apprentice
dlp252
Posted
I have seen people with just one ...

And this statement coming right after a post about breast feeding... :lol::lol:

x

You are surrounded by the nicest people (with the exception of a couple of doctors, lol). That dinner sounds WONDERFUL!!!!! Wow!

Also worried about Evie!

weathertopmama Rookie
weathertopmama
Posted

Wow, you all are fast! I feel like I've been gone for weeks and I really have only been away from the computer for a few hours :lol:

Thank you all for the warm welcomes and the information! So much to learn, so little time....

The best thing I have going for me right now is that Dh is equally up for the msg-free thing. Thankfully he got inducted into the world of diet weirdness already, with the celiac disease! I think nothing I say about food will ever surprise him anymore LOL.

My plan is to totally switch over the kitchen right after Thanksgiving. (I'm cooking for 4 large families; I think I need to keep some mainstream foods in order to keep them happy with a gluten-free feast!)

thanks for all the info and support! I'll be back!

dlp252 Apprentice
dlp252
Posted
Wow, you all are fast! I feel like I've been gone for weeks and I really have only been away from the computer for a few hours :lol:

Ha, yep, it can move kind of fast here at times, lol. Still, this is nothing compared to how it was about 300 pages ago, lol. :lol:

AndreaB Contributor
AndreaB
Posted
My plan is to totally switch over the kitchen right after Thanksgiving. (I'm cooking for 4 large families; I think I need to keep some mainstream foods in order to keep them happy with a gluten-free feast!)

thanks for all the info and support! I'll be back!

You're making me tired already. :P

I'll be in the air Thanksgiving evening. We will be having ours the week before or after. Haven't decided yet.

You don't want to leave this thread for more than a day or you'll be lost. :P:lol:

rinne Apprentice
rinne
Posted
And this statement coming right after a post about breast feeding... :lol::lol:

:lol::lol::lol: I know I had to think twice. :lol:

Laura the meal your mom is making sounds delicious and your friends are so thoughtful to send you flowers. How wonderful that you have so many people in your life that care for you.

Rachel I am still thinking about how very few things you can eat. I'm glad sugar isn't a problem for you the way it is for me. :ph34r:

AndreaB Contributor
AndreaB
Posted
Ha, yep, it can move kind of fast here at times, lol. Still, this is nothing compared to how it was about 300 pages ago, lol. :lol:

Yae! That was like 30 pages a day. Totally time consuming.....

Rachel I am still thinking about how very few things you can eat. I'm glad sugar isn't a problem for you the way it is for me. :ph34r:

Me too. I don't think I'd get tired of beef but everything else.....ok, maybe I'd horde the ice cream too......ok, so I WOULD.....if I didn't have much to choose from and my allergies didn't get worse. :ph34r:

dlp252 Apprentice
dlp252
Posted

Soooo anxious to hear how Rachel's appointment went today!!

AndreaB Contributor
AndreaB
Posted
Soooo anxious to hear how Rachel's appointment went today!!

Ditto.

Green12 Enthusiast
Green12
Posted

Welcome Amy :)

Laura- Lots of love to you during your food challenges. I know it wont be easy, but hopefully it will go fast and you will get some helpful information and answers out of it.

Donna- Best of luck with your second quadrant amalgam removal tomorrow, hope it goes as smoothly as the first :)

I am also concerned about Evie, hope we hear from her soon.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
3. My mom is making me homemade tacos tonight. Fried corn torts, beef/onions in seasoning, lettuce, tomatoes, onion, cheese, sour cream....wow. Then she made the pumpkin cheesecake recipe (with a gluten-free cookie crust) that I made for thanksgiving last year. She also made me gluten-free banana bread, and got me the gluten-free pretzels that I love. Oh, the food that I will eat. I'm a bit nervous, but I feel the support from Rachelville :)

Sounds yummy, I hope you enjoy the food and dont get too too sick. :)

My two favorite deserts are pumpkin pie and cheesecake....thats what I eat around the holidays. I love banana bread too. You're getting all my favorite holiday treats tonight! :)

I'm really worried about Evie too. :(

The best thing I have going for me right now is that Dh is equally up for the msg-free thing. Thankfully he got inducted into the world of diet weirdness already, with the celiac disease! I think nothing I say about food will ever surprise him anymore LOL.

:lol::lol:

Good that you have a supportive and understanding hubby. :D

Ha, yep, it can move kind of fast here at times, lol. Still, this is nothing compared to how it was about 300 pages ago, lol. :lol:

Thank gaaaaawd for that......my head was spinning during that time!! :wacko:

Soooo anxious to hear how Rachel's appointment went today!!

:D

I feel better about everything after seeing the hocus pocus lady. :lol:

I got lots of scientificness to share too.

Julie....I didnt forget you...I will send a pm later. :)

I *did* forget my MSG question though. :(

I only get like 10 minutes with her before she starts the actual treatment.....and there is no talking going on during the treatment. So I gotta ask everything within the first 10 minutes. I go back on Thursday so will save that question till then.

She gave me a copy of my full report.....what she sent to my Dr. I'll share some of that later too.....its got my whole treatment plan layed out on it.

I discussed my Dr. appt. with her....about how he made me feel and about how I havent gotten an exact treatment plan for the Lyme yet. She asked if he was testing for the co-infections?? I told her yes, he is but no real discussion of treatment yet. She said this is normal.....there wont be a treatment plan until he gets the results of that test.

Have to surrender the computer for a bit so will be back shortly. :)

Green12 Enthusiast
Green12
Posted

Rachel, sounds like you had a great appt. :D Look forward to hearing all about it.

Speaking of pumpkin pie, I just posted a few recipes I found doing an internet search for dairy free/soy free pumpkin pies. It's very hard to find one free of both offenders. Anyway, there might be something you could work with there Rachel, maybe? :unsure: I would like for you to be able to eat pumpkin pie, or something closely resembling it. I guess you could blend mashed pumpkin into your ice cream :blink:

:lol:

rinne Apprentice
rinne
Posted
Speaking of pumpkin pie, I just posted a few recipes I found doing an internet search for dairy free/soy free pumpkin pies. It's very hard to find one free of both offenders. Anyway, there might be something you could work with there Rachel, maybe? :unsure: I would like for you to be able to eat pumpkin pie, or something closely resembling it. I guess you could blend mashed pumpkin into your ice cream :blink:

:lol:

:lol:

Julie, I've been thinking about you, how are you doing?

Mtndog Collaborator
Mtndog
Posted

Hi y'all- laura, I know you're beginning your week from hell, but I'm so glad that you are surrounded by such caring people! :wub::wub::wub::wub:

I hope Evie's OK....I had C Diff this summer and it was awful. :(

Rachel- About the gene thing, I was only tested for DQ2 and DQ8 and i only have DQ8 (I think...I have to check my signature :P ). But my doctor only tested me for the celiac genes. Actually, have we come come to a consensus that you can be gluten intolerant but not celiac? I thought that either way, it was celiac. :blink: I'm not sure I undertsand the difference between gluten intolerance (no damage?) and having celiac.

Glad your appointment went well.

Donna- Good luck with the next step of amalgam removal. Gosh- will you be glad when this is all over!

Arrghh... got my blood tests back today. Nuthin'- which is good because he was looking for lupus, rheumatoid arthritis and some other autoimmune stuff. But my red blood cell count was low (last time my it was my white blood cell count :blink: ). Of course, my Lyme test was negative but heacknowledged the one he ran was pretty lame so he wants me to follow up with the rheumatologist.

I did have a horrific realization today...when I was having all that joint pain and stiffness, I was taking fish oil (Nordic Naturals) that has soy in it. :angry: BUT, I still don't think that's the reason.

So, I'll follow up with the rheumy and talk to him about Igenix testing. Wish I had an MD so I could just test my self!

miamia Rookie
miamia
Posted
:lol:

Julie, I've been thinking about you, how are you doing?

julie i have been thinking about you too-

rinne Apprentice
rinne
Posted
Arrghh... got my blood tests back today. Nuthin'- which is good because he was looking for lupus, rheumatoid arthritis and some other autoimmune stuff. But my red blood cell count was low (last time my it was my white blood cell count :blink: ). Of course, my Lyme test was negative but heacknowledged the one he ran was pretty lame so he wants me to follow up with the rheumatologist.

So, I'll follow up with the rheumy and talk to him about Igenix testing. Wish I had an MD so I could just test my self!

Beverly, I'm glad to know that you don't have lupus or rheumatoid arthritis but I am confused about why if he ran a lame Lyme test on you he wants to follow up with a rheumatologist. :huh: I think I need to find out what a rheumatologist is.

Just in case anyone lurking is looking for a link to Igenex:

Open Original Shared Link

I'm concerned about Evie too. :( She sounded so fragile in her last post.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Anyway, there might be something you could work with there Rachel, maybe? :unsure: I would like for you to be able to eat pumpkin pie, or something closely resembling it. I guess you could blend mashed pumpkin into your ice cream :blink:

Nope...no pumpkin for me. I've reacted to all the pumpkin I've tried. I'm stickin to my 5 safe foods. :P

Rachel- About the gene thing, I was only tested for DQ2 and DQ8 and i only have DQ8 (I think...I have to check my signature :P ). But my doctor only tested me for the celiac genes. Actually, have we come come to a consensus that you can be gluten intolerant but not celiac? I thought that either way, it was celiac. :blink: I'm not sure I undertsand the difference between gluten intolerance (no damage?) and having celiac.

Bev...if you only got Celiac genes tested then you dont know what other intolerance genes you might carry since only Enterolab tests for those genes.

Nope....not all gluten intolerance is Celiac Disease. I dont have Celiac Disease. Celiac is blunting of the villi...I dont have this.

Why would the guy order a lame Lyme test to begin with?? Seems like a waste....why not just order Igenix from the start?? :unsure:

Beverly, I'm glad to know that you don't have lupus or rheumatoid arthritis but I am confused about why if he ran a lame Lyme test on you he wants to follow up with a rheumatologist. :huh: I think I need to find out what a rheumatologist is.

I got sent to a rheumy in my long string of Dr.'s and specialists. A rheumatologist deals with joints and arthritis and things like this.

AndreaB Contributor
AndreaB
Posted
I guess you could blend mashed pumpkin into your ice cream :blink:

:lol:

I have actually blended vanilla ice cream with pumpkin puree before....not bad but you don't need much of the pumpkin. :P

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    • trents
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    • catnapt
      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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