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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


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

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Rachel--24 Collaborator

I think I might go pick up my Samento now. I'm scared to start taking it though. :ph34r:

At least if I buy it I can take it to BioSET tomorrow and have them test the real thing to make sure I can have it. I dont wanna get sick right before Xmas.....and I dont want to be wondering if its a Herx or just a reaction to the stuff. <_<


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Holidaily Brewing Co.
Food for Life



Celiac.com Sponsor (A8-M):
Little Northern Bakehouse


  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
I have an Orek upright with an anti-allergen bag -- the permanent bag is the one that traps the allergens, so you just get regular bags for inside. They're expensive, but I really like it. It comes with a second more portable vacuum, and a dust-buster, so you have all the vacuum cleaners you need with just one purchase! :lol: Expensive though.

I have one of those "bagless" ones. The dust and dirt just goes into a plastic thingy and you dump it out. I think I just need to replace filters....but where the heck do I get them??? :unsure:

CarlaB Enthusiast
I have one of those "bagless" ones. The dust and dirt just goes into a plastic thingy and you dump it out. I think I just need to replace filters....but where the heck do I get them??? :unsure:

My upright came with one of those. I like it. I get the filters and bags for the other ones at the Oreck store. I think that's the only place that sells them.

AndreaB Contributor
I asked about whether the results of my stool testing were in, and they were, but they won't tell you like that, you have to speak to one of the doctors...I'll do that on Wednesday. I do know that whatever they found needs a prescription, cuz they mentioned that one was already written. :( Hoping it's not C.Diff, but also not sure if I want any of the other parasites/bacteria either. Not really sure if any others can be fixed by prescription, Candida maybe??

Friday I will be re-evaluated for the chiropractic/physical therapy stuff to see if there is any improvement (um, my best guess, NO, lol). Preparing myself for the :huh: look I'll get when I reemphasize the mercury/lyme thing. :lol:

I'll be waiting for more news from you this week Donna.

I think you'll get that look also. :P

Judy - take your time about posting, but hurry up okay, lol. :lol: Just kidding, sort of. :P

:lol::lol: I agree.

Is everyone ready for Christmas??

I'm considered a very early shopper for the most part. I get most of it done in Sep/Oct.

I did this to a dog that lifted his leg on a chair ... only it was more of a castration ... from then on my hubby would tell people, "You'd better not make her mad, you should see what she did to the dog!"

:lol::lol::lol:

I had my blood taken for the coinfections today. She had the seal break on the blood container -- TWICE! So the other nurse came in and took it from the other arm. HEINOUS!

Uggghhhh! I hope you recover from that quickly. I also hope you are feeling better. How long before you know about the co-infections....2-3 weeks?

I think I might go pick up my Samento now. I'm scared to start taking it though. :ph34r:

At least if I buy it I can take it to BioSET tomorrow and have them test the real thing to make sure I can have it. I dont wanna get sick right before Xmas.....and I dont want to be wondering if its a Herx or just a reaction to the stuff. <_<

What about waiting to start it until after Christmas.

CarlaB Enthusiast

Yes, two or three weeks. Just so long as it's before my doctor appt. in January is all that really matters!

I asked the nurse if they reported my Lyme to the CDC. The nurse said the doctor had some questions for the lab first ... who knows why she hasn't called them yet ... I asked what the questions were, and she said she didn't really know but the doc wasn't sure if it was an active infection or antibodies from a past infection. I told her that the doc must be questioning because the Igg was raised not the Igm. She said that was the reason ... I told her it didn't matter with Lyme which it was, that you have Lyme either way, that Lyme was somehow different than other infections. I don't know why she hasn't called the lab yet.

Rachel--24 Collaborator

I got the cats claw.....it says right on the box "Herxheimer's reaction may occur". It says sensitive individuals may have to stay on one drop per day for a period of time...then gradually increase. Well....thats me. I guess I'll be taking one drop...and probably feeling like death from it. :(

I'm definately waiting till after Xmas to start on it. I'm scared. :ph34r:

Rinne....did you herx from the cats claw?? How many drops do you take??

What do you guys think.....if I start herxing should I redo the Western Blots?? Anyone think that the cats claw is strong enough???

CarlaB Enthusiast
What do you guys think.....if I start herxing should I redo the Western Blots?? Anyone think that the cats claw is strong enough???

I don't know. As much as they cost, I'd probably try the antibiotics to be SURE they are right. I hope my samento comes soon ... I had to order it!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Daura Damm
Little Northern Bakehouse



Celiac.com Sponsor (A8-M):
Little Northern Bakehouse


Mango04 Enthusiast

Hi everyone. I'm back in the US. I was away from the board for a while and now suddenly everything's different :unsure: I'm too tired and lazy to figure it all out right now but it kind of looks like myspace with friends and comments and what not lol how weird. I'll have to stop by again when I'm more awake to read and catch up with everyone. It's just too exciting that it's Monday here where I am AND where you all are (except I just saw Georgie here so almost all of you lol).

ps sorry for the pop in/drive by that has nothing to do with what's being talked about. I guess I've done lots of those lately lol

Oh and I'm not the koala but I can't figure out how to change the caption. Okay I'm really leaving now :)

AndreaB Contributor

Hey Meredith!

Good to see you!!!

Actually it's Monday today. :)

Get some sleep and come back to learn the new board after you catch up from jet lag etc.

Mango04 Enthusiast
Actually it's Monday today. :)

.

:lol: Yeah I caught that. Well it was summer two days ago for me so I'm just really confused :blink::lol:

AndreaB Contributor
:lol: Yeah I caught that. Well it was summer two days ago for me so I'm just really confused :blink::lol:

:lol::blink:

Isn't is warm in California? I know, it's not for you but it would be for us.

After you get some rest you'll have to fill us in on your avatar. Beautiful picture.

That koala looks pretty human to me. :P:lol:

Judyin Philly Enthusiast

QUOTE(dlp252 @ Dec 18 2006, 02:42 PM)

Judy - take your time about posting, but hurry up okay, lol. Just kidding, sort of.

I agree. QUOTE(Rachel--24 @ Dec 18 2006, 03:33 PM)

Is everyone ready for Christmas??

NO NO NO NO NO NO ! I'M NOT..MAYBE I'LL CELEBRATE IT IN AUGUST.

Thanks guys.

Could feel the strength from all of you today.

I want to post when i feel like I'm emotionally stronger.

The apt was ..can't even think of the word for it

too much history that i didn't even share earlier..basically i'm back to square one.

referal to see a dermatologist...who knows how long that will take TO GET IN . He thinks it will be hard to get rid of..a fungal infection..the white stuff i can scrap off is dead skin???

Want's a total new work up with GI ..a newGI DR. MY CHOICE TOO...don't know her..scope, colonoscopy, etc nothing about testing for more answers with celiac..he wants to rule out cancer...of course he does,, but it's celiac and all that means.

" said since I'm not 100% better on celiac diet, there are other things going on."

Going to bed with the pump and call it day and try not to think about everything..17 months gluten-free and he's suggesting a gluten challange that's when i kinda felt i needed some time off from thinking. SAID "if i do that i'll be in bed for weeks."

love and thanks for all your info. didn't need it today as NONEof those issues were discussed.

omg i'm tired.

love you guys.

it's wonderful to be able to count on you all.

Judy

AndreaB Contributor

Judy,

How totally frusterating! I hope you can get a good nights sleep. We'll talk to you tomorrow.

Judyin Philly Enthusiast

Andrea, how sweet.

yep, it was.

worked on Christmas cards till 3:00 am and woke up at 6:00...guess that's 3 hrs sleep.

Cleaning lady. (don't begrudge me, ladies..at 65, it's always been my dream to have the little 'pixies' or faries come and clean while I sleep, well guess at my age it's ok, right?) she hadn't been here for 3 months then came andour company left on the 10th and now getting guest b/room ready for son again. In a 2 b/room cape cod with 3 frigging closets it's like a major move (out and into ) everytime there is company. She's retired and only comes to me..so i'm blessed to have her..we start out with coffee and catch up chatting then I clean along with her (in other rooms..like a tornado before she hits the next room) remember my favorit motto...' CREATIVE WOMEN HAVE COBWEBS IN THEIR CORNERS, NOT IN THEIR MINDS.' AND MY house reflects my motto. :lol: See I'm smiling this am...no worries friends.

judy

dlp252 Apprentice
Is everyone ready for Christmas??

NO!!! :lol: I don't even know if my family is exchanging gifts this year. I suppose I really SHOULD ask my mom, lol. I figure I'll go out and get some gift cards or something. I haven't had any energy to even THINK about it much less do it, and same here with the medical expenses and vacation expenses. :(

dlp252 Apprentice
I did this to a dog that lifted his leg on a chair ... only it was more of a castration ... from then on my hubby would tell people, "You'd better not make her mad, you should see what she did to the dog!"

:o

dlp252 Apprentice
I had my blood taken for the coinfections today. She had the seal break on the blood container -- TWICE! So the other nurse came in and took it from the other arm. HEINOUS!

:o:o

dlp252 Apprentice

Wow Judy, the appointment really does sound frustrating, but I'm glad you are in good spirits today!

Andrea, we weannies in California can't take this current cold spell...it's been below freezing at night, burrrrrr, lol. I was so cold all day yesterday...had on a long sleeve tee-shirt, a sweatshirt over that, and a blanket and was still shivering on the couch.

Rachel - good luck with the cat's claw...I'd be scared too.

Welcome back Mango!!!!

I'm home from work again today...still have ZERO energy and a sore throat. I sound like I have a cold, but my nose is not congested or stuffy, so I don't know what's going on. I may see if one of my doctors can test for strep throat today...don't know though. I woke up at 2:00 because of the throat and couldn't get back to sleep.

happygirl Collaborator

Judy, apparently your doc and some of my docs must be buddies...suggesting the gluten challenge! we KNOW gluten is a problem....I don't care what you want to call it....celiac, gluten intolerance, gluten allergy...

jerseyangel Proficient

Judy,

I think Laura's right about the gluten challenge. Why test something we already know the answer to? :huh: You have bigger issues to address ;)

Donna,

I'm sorry you are still sick today. I was wondering about you, hoping you felt better and were posting from work. Get lots of rest, and let us know :)

Hi to everyone!

I made like a million christmas cookies yesterday..Worked on them all day--and they look and taste wonderful. I used rice flour and for the frosting, confectioner's sugar (cornstarch). I even colored my own sugar to avoid CC.

This morning, my stomach was not happy--I don't ever eat rice more than once a week, and have been avoiding corn. I guess the 10 or so cookies were a bit too much to handle :P

The good news is that my husband said they're the best ones he's ever had. At least the guys can enjoy them.... :lol:

AndreaB Contributor

Judy,

I agree with the nonsense of a gluten challenge. Don't you get sick when you get glutened? That's your answer then.

Donna,

I hope you can get your test today. :( Keep us posted. Glad to have you back. :)

Patti,

I hope this doesn't leave you down long. I would be mourning not eating all the goodies you've taken the time to bake.

jerseyangel Proficient

Hi Andrea :D

Naw--I'm fine. The stomach stuff is over and I'm pretty used to not being able to eat what I'd really like to.

The important thing is that the guys will enjoy everything--that makes me really happy!

Rachel--24 Collaborator
He thinks it will be hard to get rid of..a fungal infection..the white stuff i can scrap off is dead skin???

Judy,

They need to figure out *why* you're getting fungal infections, candida, etc. It happens when the immune system is run down. What is the point of the gluten challenge??? To make you feel worse and drag your immune system down even further??? :blink:

"said since I'm not 100% better on celiac diet, there are other things going on."

I agree...but why go BACK on gluten and REVERSE the healing you've already done?? :huh:

angst2amity Rookie

I wanted to check in...

No Lyme antibodies. No neutrophils. High Glucose count in Cerebral Spinal Fluid. What the heck? I know it probably wasn't Igenex but I don't know anything or what direction to even take. It is very frusterating to be a medical zebra.

Boo Hoo

Rachel--24 Collaborator

Angst,

If you suspect you might have Lyme you should see a Dr. who specializes in Lyme Disease. The tests arent very sensitive at all. Igenix has the most sensitive test.

LD is frequently misdiagnosed. Physicians frequently overlook cases of Lyme disease simply because they don

Archived

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


  • Celiac.com Sponsor (A19):
    Food for Life



  • Member Statistics

    • Total Members
      130,283
    • Most Online (within 30 mins)
      7,748

    CSK 157
    Newest Member
    CSK 157
    Joined

  • Celiac.com Sponsor (A20):
    Daura Damm


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX



  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):
    Lakefront Brewery



  • Upcoming Events

  • Posts

    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
×
×
  • Create New...