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

AndreaB Contributor
Night everyone....I'm still on my heinous schedule. :rolleyes:

Night Rachel. Looking forward to hearing about your appointment tomorrow.

Your night time routine sounds relaxing......


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Guest melannen
Speaking of diagnoses...I wonder what "other" stuff I'll find out tomorrow at my test. I will be shocked if they say I dont have mercury toxicity....I'm just really expecting it to come up.

I'm still eating ice cream daily...at least 1 pint a day...I have 2 flavors to choose from now. :D

So far no problems but I was hoping I'd gain some weight...so far it hasnt happened but I havent lost any weight either.

My body has a hard time warming up when its cold so after a pint of ice cream I sometimes need to take a hot bath. Its my favorite thing at night...ice cream, hot bath, warm jammies and comfy bed. It all starts with the ice cream. :D

Night everyone....I'm still on my heinous schedule. :rolleyes:

Oh that sounds so nice! I may have to follow your example tonight :D Mmmmm vanilla with snickers and a hot bath (well, shower in my case; I'm not too fond of baths), maybe I'll follow it with my favorite stand-up comedy tape (Comedy Live presents: Dylan Moran)!

Sweet Dreams!!

happygirl Collaborator

x

Green12 Enthusiast

500 pages, still no balloons :lol:

Jessica, excellent use of craftiness :lol:

Hi Laura, glad you posted an update on your first day at work. Sounds like it was kind of bittersweet, good to be starting but took its toll on you physically. I'm glad you have such great support with your parents and husband, and boss :) Good luck with your appt Wed.

Rachel, enjoy your ice cream and bath.

Can't wait to hear about everybodys appointments....

Everyone has an appointment but me this week I think :lol: Well I am going to acupuncture Wed, does that count? :blink::lol:

Susie is hiding, I am thinking she went for the Crispy Cremes.........

Guest melannen
Jessica, excellent use of craftiness :lol:

Susie is hiding, I am thinking she went for the Crispy Cremes.........

Thanks!!

Susie emailed me earlier today, she threw out her back and neck gardening yesterday. Didn't say if she had gone for the Crispy Cremes....I hope she didn't :(

miamia Rookie
Hey ladies! (and Richard, theDave, and other boys!)

I feel like I've been gone way too long. I have read briefly and hope to catch up more. I am excited for everyone's appt's tomorrow..and Wed...and the rest of the week. So everyone must post ASAP so that we know if they've figured something out. I really think that even though it might not be the answer for one of us individually, it might be the answer for one of the others.

Susan, its funny, because the bulldogs to me are UGA (my mom is a graduate of there!)...and I went to Auburn (SEC-same conference as UGA)....so I am completely lost on the western teams.

Well, today was my big first day of work. My Dad got into town yesterday and Eric got in late Sunday night. It was so great to see him...I kept going into the kitchen, to see if he was here yet. I told him I felt like I was waiting for Santa to come! I was so happy to see him. Everyone got up to see me off to my first day of work...I wore a black pantsuit with black boots and a pink silky button down shirt under the jacket. I looked pretty nice considering everything! My mom drove me to work (she doesn't want me wasting energy on driving/parking/walking). Did the inprocessing, then eventually made it over to my office. Everyone was really nice, and very warm and welcoming. I talked to my boss (we had originally talked to someone above her about my "issues" since she was out of town) and explained my issues. She was extremely understanding and told me that she has severe RA. So, I feel like this will be a good fit for me.

I must say, I am way beyond exhausted. Way worse than I thought. I feel like I can barely function. I came home and my mom made dinner for me. I took a bath and now I'm watching a little bit of TV. Going to go to bed super early tonight so that I can do it all over again. But I'm taking Wednesday off for my app't at NIH....we have to be there before 9am to check in .... and its over an hour away....plus my appt is 1.5-2 hours long they said. So, after all that, it will just be too much for me.

I thought about you guys all day and wondered how everyone is doing. For right now I'm not going to be getting on the forum during work hours (have to assess everything first!) but I will have access to emails.... I'll be checking the forum during the evenings, but feel free to say hi via email.

Donna, Julie, Rinne, Andrea, Patti, Miamia, Rachel, Carla, susan, and Jessica (and anyone else I forgot!)---hope you are all having a great night. I look forward to hearing about everyone's days/weeks/appointments.

Much love...xoxo :wub:

Laura-

happy to hear your first day at work went well. What exactly does your appt. at NHI entail?

Miamia

500 pages, still no balloons :lol:

Jessica, excellent use of craftiness :lol:

Hi Laura, glad you posted an update on your first day at work. Sounds like it was kind of bittersweet, good to be starting but took its toll on you physically. I'm glad you have such great support with your parents and husband, and boss :) Good luck with your appt Wed.

Rachel, enjoy your ice cream and bath.

Can't wait to hear about everybodys appointments....

Everyone has an appointment but me this week I think :lol: Well I am going to acupuncture Wed, does that count? :blink::lol:

Susie is hiding, I am thinking she went for the Crispy Cremes.........

Julie

I dont have nay appts. either- well biofeedback but I have that every week so I am not sure if that counts.

How are you feeling?

Miamia

Miamia

Green12 Enthusiast
I've been considering getting the Enterolab gene test done--for 2 reasons. First, I'd like to know for my self which genes I have--and if it matches up with the neuro symptoms. (I never had any Celiac blood work done, only the biopsy) Also because it may spur more members of my family to be tested. I've got to light a fire under them somehow :D

I went back to find this post :ph34r: so scary, but I made it....

I have been thinking about this too Patti. How does one go about getting tested through Enterolab? Do you have to go through a doctor? Would love any information anyone might have :D

Thanks Jessica for the Susie news :lol: I hope she is ok. Susie Q, if you are out there let us know if you are ok.

MiaMia, hi! I have been wondering how you have been doing. What is this biofeedback? Is it similar to the bioscan machine?? You have me curious. I've been doing pretty good. Just trying to figure out my diet, but that seems to be a never ending process.


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Julie, for Enterolab go to www.enterolab.com and you can order the tests there.

Laura, great to hear from you! Congrats on the first day of work! Don't overdo it!!! You need lots of rest so you can heal!

Green12 Enthusiast
Julie, for Enterolab go to www.enterolab.com and you can order the tests there.

Thanks so much Carla :) I am heading there now....

miamia Rookie
I went back to find this post :ph34r: so scary, but I made it....

I have been thinking about this too Patti. How does one go about getting tested through Enterolab? Do you have to go through a doctor? Would love any information anyone might have :D

Susie Q, if you are out there let us know if you are ok.

MiaMia, hi! I have been wondering how you have been doing. What is this biofeedback? Is it similar to the bioscan machine?? You have me curious. I've been doing pretty good. Just trying to figure out my diet, but that seems to be a never ending process.

Julie-

Biofeedback works on getting your brain waves- alpha beta etc to become more balanced so for me since I am n pain alot it is supposed to help with relieving some of it and getting my body and mind to relax and become more balanced. thats the rough explanation its more in depth.

Miamia

happygirl Collaborator

x

Lisa Mentor

NOW, YOU ALL REALIZE THAT ALMOST 130,000 PEOPLE HAVE PEEPED INTO YOUR LIVES..............OMGsh :o:o:o:o

DingoGirl Enthusiast

just a drive-by everybody....or maye a slither......am deep in fog....and that was even there BEFORE I ate the three donuts today....yes, I did. Three chocolate-cake donuts of gluten-y heaven fluff....not Krispy Kreme, I went for my favorites, and loved every minute of it. Later, walking the dogs in the orchard, I collapsed in tears. that wasn't from gluten, though.

cried all day....even before donuts....and am now in bed. I don't expect ANY of you to feel sorry for me or try and offer the sweet comfort that you will.....I deserve every bit of the onslaught that is sure to begin in a few hours....nothing so far. :huh:

Managed to get my blood work todya after THREE tries and let me tell you, that was like summitting Everest without supplemental oxygen. I cried each time upon discovering lab was closed or there were 15 people ahead of me. HOw crazy, to cry over that but I just had NO stamina and the world just looked hazy adn blury and my head felt full of cotton. So.....I looked at my lab slip. I"d asked the doctor to test ALL thyroid, T3, T4, everything, and she had not checked those boxes. :angry: So I DID. Harumph.

locked my keys in the car today.....that is about the fourth time, and all within the last year. it virtually never happened before, in my entire life. brain is completely falling apart. Sent TWO emails today to best friend to tell her I"d eaten donuts. It's been getting worse and worse.....it is so sad. I am a cute, fun, silly, loyal, creative and imaginitive girl, formerly full of life and recently I just......well I am just feeling flattened as with a steamroller and don't know what to do any more. So so so tired, just bone-ass tired.

goodnight sweet friends, I am in bed already with magazines and dingos and soon celebrity gossip as that fluff is all my mind can encompass and maybe more crying. Annie will be there, holding my hand.

I am so sorry for the whining and rant. Love to you all, dear ones......

CarlaB Enthusiast

Susan ... I'm sorry :( I know what you mean about the mind not working right .... mine's finally coming back some, no where near where it used to be.

Oh, and "bad girl, stay away from the donuts!!!!!"

Read your gossip, gets some sleep, rest and take care of yourself tomorrow.

Fiddle-Faddle Community Regular

It's okay, Susan--tomorrow is another day! Get some well-deserved rest tonight, and tomorrow go outside and fill your lungs with fresh air and your tummy with healthy foods that won't cause you pain, maybe some nice hot soup...

Judyin Philly Enthusiast
:)

Hi LauraJ-thanks for the HI

Hugs to Patti, Judy, and Andrea-know yall aren't on, but wanted to say hi. xoxo

Robbin and Celia..

have the bottles right here.

just came up to go to bed and forgot again..so went back down when i saw you were on line.

celia, hope you get in time to tell dr tomoorw

good luck and please let me know how apt went wrote you and asked what kind of dr?

Robbin..did you get my email today?

judy

Judyin Philly Enthusiast

TwinLab

DAILY TWO CAPS W/O IRON

Highest Potency Multiple Vitamin & Mineral Supp Rich in Antioxidant Vits C,E,& Beta-Carotene

doesn't have phone or web site. sorry

Free of most common allergens such as Yeast, wheat, lactose (milk sugar) and all milk and eggs products No added sugars, salt salt or preservatives.It doesn have lecithin (which i have to watch for (D) doesn't say corn.

might try googleing Twin Labvoratories INC> American Fork, Utah

see if all the vit are listed or else i'll type all in

****************************************

Country Life

These are the minerals

TARGET-MINS IRON0FREE

MULTI-MINERAL COMPLEX WITH bORON

vEGETARIAN/hYPOALLERGENIC dietary supplement

might try InerHealth Nutraceuticals, INC

NO: Yeast, corn, wheat, gluten, milk slak sugar starch perservatives or artificial color

good luck ladies.

love

judy

Mtndog Collaborator

Oh my sad friend Susie Q- obviously I wish you hadn't had the donuts, but everyone has a breaking point and given what you've been through lately, I can see how you would have reached yours (the painting, your back, need i go on?) so yes- you have my sympathy and my :wub::wub::wub::wub:

Next time- call me!!!!!!!!!!!!!!!!!!!!!!!! Email me and I'lll send you my phone number.

Well, add me to the test list. I'm seeing my physiatrist October 31st (hope it's a treat and not a trick!) and he is going to test me for Lyme. I'll bring the igenix info. Hope he'll be open to it. He's amazing actually- he was the one who told me he believed my fibro symptoms were secondary tp something else. Physiatrists, for those of you that have joint, muscle or problems with arthritis, are AWESOME. They treat the whole patient- not just the symptoms. I'm glad i found one!

If Lyme comes back negative I'm pursuing the thyroid thing next. Rachel has inspired me to press on!

Hugs and love to all, B

Judyin Philly Enthusiast

Hi Susan

think you said you had 'fog' before donuts'

if i eat things high in sugar now i get fog..for sure..big time.

don't beat your self up..

we love you just the way u are.

glad you posted

love

judy

Well, add me to the test list. I'm seeing my physiatrist October 31st (hope it's a treat and not a trick!) and he is going to test me for Lyme. I'll bring the igenix info. Hope he'll be open to it. He's amazing actually- he was the one who told me he believed my fibro symptoms were secondary tp something else. Physiatrists, for those of you that have joint, muscle or problems with arthritis, are AWESOME. They treat the whole patient- not just the symptoms. I'm glad i found one!

If Lyme comes back negative I'm pursuing the thyroid thing next. Rachel has inspired me to press on!

Hugs and love to all, B

Still trying to get ahold of the place and get it ordered.

good luck.

judy

Guest Robbin
Wow... so many appointments tomorrow... hope everyone posts what all happens...

Yes, we need that input-what to ask our doctors and what to avoid, etc.

Now, Susie, I am not going to say "Bad girl" to you. I know what hell you have been through and beating yourself up over wanting a taste of "normality" for yourself is not the way to go. Gluten free is now normal for you, but you are allowed to be HUMAN. You are a valued, wonderful, funny, beautiful, talented lady who is ill, plain and simple. You MUST not be so impatient! It has not been that long for you. Let your emotions and spirit heal as well. You have so many worries on your mind, your mind cannot focus on the here and now. Take each moment calmly and LIVE IN THAT MOMENT. Don't go off thinking of too many things at once, it causes overload in the circuits. (Happens to me when I don't calm myself down) You are not the only one of us to have these kinds of breaking moments and we are here to support each other. Life is hard enough, don't make it harder on yourself. Take rinnie's advice-love yourself.

Mtndog Collaborator
Now, Susie, I am not going to say "Bad girl" to you. I know what hell you have been through and beating yourself up over wanting a taste of "normality" for yourself is not the way to go. Gluten free is now normal for you, but you are allowed to be HUMAN. You are a valued, wonderful, funny, beautiful, talented lady who is ill, plain and simple. You MUST not be so impatient! It has not been that long for you. Let your emotions and spirit heal as well. You have so many worries on your mind, your mind cannot focus on the here and now. Take each moment calmly and LIVE IN THAT MOMENT. Don't go off thinking of too many things at once, it causes overload in the circuits. (Happens to me when I don't calm myself down) You are not the only one of us to have these kinds of breaking moments and we are here to support each other. Life is hard enough, don't make it harder on yourself. Take rinnie's advice-love yourself.

Beautifully said!

AndreaB Contributor
I went back to find this post :ph34r: so scary, but I made it....

I have been thinking about this too Patti. How does one go about getting tested through Enterolab? Do you have to go through a doctor? Would love any information anyone might have :D

Julie,

Open Original Shared Link

I think we are just going to have the gene test with Seth next year since he won't be eating gluten, soy or dairy.

The rest of us had ours done. I think it's interesting to see who got what genes with the kids.

AndreaB Contributor

Yes, Robbin, Well said.

Susan, we :wub: you. Don't be so hard on yourself.

Checking off your own tests. :blink::lol:

Laura,

Sounds like you had a tiring but productive day.

Miamia,

Hope things go well with you bio thing.

Julie,

Acupunturist counts too.

Everyone else....seems there was someone else I wanted to address.....OH yah, Bev, will be looking forward to your appointment at the end of the month.

Judy,

Hope you get some answers and lyme testing soon too.

TheDave Newbie
:P:P:P:P:P:P:P

Are we having a spat here? (I Love that word!)

No never! ;)

btw--The Dave--Are you staying out of trouble??!!

I seriously doubt it. Anyone care to confirm this? :ph34r:

Thanks Dave!!!! I hadn't thought about that, but that's a great idea! I'm sure it wouldn't be long before the other one went too. The parts for Saturday's service were only $380-ish...the labor was $909!!!!!

Donna, they are ripping you off. Check another place.... MAX you should pay is like $60-75 an hour for labor, and your strut job for BOTH should only take like 2-3 hours MAX. Total labor should be like $200-250. PM me if you need anymore info...

My body has a hard time warming up when its cold so after a pint of ice cream I sometimes need to take a hot bath. Its my favorite thing at night...ice cream, hot bath, warm jammies and comfy bed. It all starts with the ice cream. :D

At least a pint a day.... :rolleyes:

How about eating it while you're in the tub? That way you never get THAT cold....?? B)

warm jammies huh? like what..... long johns? :P

-Dave

AndreaB Contributor
Donna, they are ripping you off. Check another place.... MAX you should pay is like $60-75 an hour for labor, and your strut job for BOTH should only take like 2-3 hours MAX. Total labor should be like $200-250. PM me if you need anymore info...

Is that all for California even. They charge $80-90 up here!

How about eating it while you're in the tub? That way you never get THAT cold....?? B)

-Dave

Now that's a good idea. :lol:

Archived

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

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

    • Total Members
      133,045
    • Most Online (within 30 mins)
      7,748

    Emj 86
    Newest Member
    Emj 86
    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

    • tiffanygosci
      Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.
    • 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.
×
×
  • 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.