Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

rinne Apprentice
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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Fiddle-Faddle Community Regular
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
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

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
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
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

x


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AndreaB Contributor

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
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

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
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
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
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
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

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

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

Ditto.

Green12 Enthusiast

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
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

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
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

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
:lol:

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

julie i have been thinking about you too-

rinne Apprentice
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
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
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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,200
    • Most Online (within 30 mins)
      7,748

    Elisa Stutsman
    Newest Member
    Elisa Stutsman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
×
×
  • Create New...