Jump to content
  • 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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,026
    • Most Online (within 30 mins)
      7,748

    thegoik
    Newest Member
    thegoik
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.