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Omg...i Might Be On To Something


Rachel--24

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rinne Apprentice

Open Original Shared Link

The information on this site provides lots of reasons to hope for recovery, they are doing studies with Samento and seeing real improvements in late stage Lyme patients.

My Nutramedix Samento is sitting here in front of me, I set the timer so that I would remember to take it before I ate but I ignored the timer :rolleyes: because I thought I wouldn't forget. As Susan says, "harumph". :lol: I am only taking one drop a day at this point but tomorrow I will go to two drops and slowly work up to the maximum dose which is about 17 drops a day for me I think.

I think hope makes an enormous difference, if only because regardless of how we feel if we have hope we have found a source to draw strength from and from there we can fall toward the pillows. I am very serious about pillows you know. :angry: Not angry, but I needed a strong and stern emoticon. :lol:

I spent 50 years throwing myself on the rocks, example: 5 years ago I started a new job and that first night I went out and twisted my ankle so badly I could barely stand the next day. I went to work. I know now that I should have taken to bed for at least a week but I didn't know how to do that. I didn't know that I had a choice, I was such a well trained little citizen that my corporate obligations :lol: were more important than my health. Rocks. I know a lot about rocks.

Pillows, I don't know so much about but I am trying to learn. I think of Rachelville as a Pillow Place. :)

When do you leave Andrea? When is Thanksgiving down there?


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happygirl Collaborator

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jerseyangel Proficient

Laura,

I'm sitting here, actually crying while reading your account of the wedding. What a wonderful, thoughtful thing your friends did in honor of you. It is beyond words. And that you thought of us at that moment--that is so touching. :)

I'm so incredibly happy that you were really able to enjoy yourself, and didn't get sick. I prayed for that for you--to have this one weekend free of the worry and discomfort.

Too funny about telling your parent's the wrong time :D Darn good thing they were close by!

Thanks for staying up to tell us all about it--I was headed to bed myself (really bad day) and saw you were posting. I just had to stick around to see how you did!

The picture is lovely--you both look beautiful B)

Rachel--24 Collaborator

Laura,

That is the most thoughtful thing....you have the sweetest best friend. I cried as I read your post....very touching. Thanks for sharing the events of the wedding day with us. :)

It sounds like it couldnt have been more perfect. ;)

I'm sooo happy that you had such a perfect and blissfully happy day! You deserve lots of these days with all you've been going through. :)

happygirl Collaborator

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AndreaB Contributor
When do you leave Andrea? When is Thanksgiving down there?

I agree, we are trained to fall on the rocks, get the job done, no matter your health. We all need to learn to fall on pillows when it is needed. :)

We leave on the 23rd, which is Thanksgiving, and come back the 27th. We actually get in about 2 am on the 28th. Don't know what I'll do without this thread for 4-5 days. I'll be behind big time unless I can use Dad's computer.

So glad you had a wonderful time! That's fantastic that they did the donation for the wedding favors! I teared up too.

CarlaB Enthusiast

Laura, that was really sweet of your friend to honor you like that on her wedding day! Thank you for sharing and for thinking of us! :wub::wub::wub:


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rinne Apprentice

Laura, how wonderful, I'm teary too. :)

DingoGirl Enthusiast

this crazy thing is not letting me do regular reply, have to do fast reply, wha twill I do without emoticons.... :o

Rinne...I have read CAdillac Desert, many years ago, it was wonderful, now somewhat dated (we discussed it last night). There is another well-known best-selling author who stirs up trouble and also writes about California issues (including the murder of his own father), my new friend last night were talking about the fact that this guy had written about some cotton/agriculture issues in central Cal, and that he (my new friend) wanted to get together with that author and write a book on water issues.....just so happens that that author lives here in town, right next door to my best friend.... (big laughing face here).....

I certainly would not turn down a date with Bev either, just to clarify. :)

LAURA - I was overjoyed at yoru first post, of the wedding, and I somehow got chills, good chills, at your followup post. What an incredible friend and a wonderful day for you. How unbelievably thoughtful and special.

Off to dinner at brother's friends' house.....

see you :)

p.s. am wondering if my new friend from the pub is a ROCK or a PILLOW?????

Guest melannen

Finally caught up :)

Feels like forever since I've been over here...though it was less then 24 hours :lol: I usually check this thread a couple times through the day but was wiped out by a migraine and have been sleeping it off (feeling much better now).

Susan - So glad you had fun! Sounds like a great guy :)

Andrea - Glad to hear you're going to visit your dad, hope you and the fam have a great time

Laura - That is so sweet!! So happy you had fun and didn't get sick!

ummmm...dang, I know there was more...have to go back and skim to see what I forgot :o

*Edit*

Rachel - I hope you work out the perfume problem, I've never gotten perfumed mail but I HATE how some magazines have a million different scented perfume adds....makes the mag smell like a perfume store :P

Rinne - lyme beetle :lol:

Carla - glad you're getting more energy, I hope this trend continues :)

rinne Apprentice
Rinne...I have read CAdillac Desert, many years ago, it was wonderful, now somewhat dated (we discussed it last night). There is another well-known best-selling author who stirs up trouble and also writes about California issues (including the murder of his own father), my new friend last night were talking about the fact that this guy had written about some cotton/agriculture issues in central Cal, and that he (my new friend) wanted to get together with that author and write a book on water issues.....just so happens that that author lives here in town, right next door to my best friend.... (big laughing face here).....

p.s. am wondering if my new friend from the pub is a ROCK or a PILLOW?????

I read Cadillac Desert many years ago and found it a good read in addition to be informative. When we had our organic garden farm I was involved in water issues and was much more informed about the issues. I suspect many of them are the same but only more urgently so now.

I'm hoping he is a PILLOW. :lol:

Jessica, sorry to hear about the migraine. I've had them. :( I hope you feel better soon.

Fiddle-Faddle Community Regular

Laura, what a beautiful photo! And your post brought tears to my eyes, too...

Judyin Philly Enthusiast

Laura

put some thoughts on your other thread but wanted to tell you have beautiful you both looked.

so happy for you.

nite

judy

Simply-V Newbie
Apparently, instead of doing wedding favors, Meghan and Brian made a contribution to the Celiac Disease Foundation in honor of me. They had apparently wanted to do something for me since I have been so sick lately, and so instead of spending money on favors that people don't really remember, they wanted to do something meaningful. So on one of the tables in the front, they had a frame with the announcement of the donation to the Celiac Disease Foundation and had a write-up about what Celiac was.

That is just amazingly thoughtful and touching. Thank you for sharing. :)

georgie Enthusiast
I dont get all these people accepting a life of pain due to Fibromyalgia. Am I missing something?? huh.gif

I have a book about TMJ....in the book it says TMJ goes hand in hand with Fibromyalgia. WTH??? unsure.gif

I tried to learn about Fibromyalgia (since I have TMJ) and the whole thing just didnt make sense to me. I *still* dont know what it really is.....or what suppossedly causes it. WHAT IS FIBROMYALGIA?????

Undertreated Thyroid? I notice Rachel that you have Graves. Read Open Original Shared Link and you may have get inspiration.

miamia Rookie

Laura-

that is a great story- I think when we are sick alot of people don't know how to act. I know I have experienced alot of weird reactions from friends just becuase they don't know what to do but that is truly an amazing story and shows that she is really a great friend- you are very lucky

Miamia

CarlaB Enthusiast
Carla,

That's interesting about your dairy.....I'll be watching for updates.

I'm fine today. I am questioning whether my number from Enterolab was so high because I ate so much dairy before and more than likely have a leaky gut. I know Reece's Pieces have casein, and I can only assume the popcorn did, too. I'm not going to test again till next week because we're going to IU to see Morgan this weekend ... haircut/color, and IU game.

AndreaB Contributor

So quiet in here this morning. I'm used to taking quite a bit of time to catch up. :)

Carla,

Maybe you can tolerate smaller doses of dairy.

Miamia,

Hi! Hope you are doing better this week.

Hi Ryan!

CarlaB Enthusiast
Carla,

Maybe you can tolerate smaller doses of dairy.

That's what I'm thinking.

evie Rookie

Sorry to break in here...am going to Dr. soon..still having bad diarrhea, worse. not be surprised if hospitalized..getting very weak..your prayers and concerns have kept me going...thanks so much.

Love to all, evie

CarlaB Enthusiast

Evie, I hope they find out what is wrong very quickly. We'll be praying for you.

jerseyangel Proficient
Sorry to break in here...am going to Dr. soon..still having bad diarrhea, worse. not be surprised if hospitalized..getting very weak..your prayers and concerns have kept me going...thanks so much.

Love to all, evie

Evie, I was wondering how you were doing! I'm sorry that things have not improved :(

Good luck at the doctor--I will say a prayer for you :)

Rachel--24 Collaborator
Undertreated Thyroid? I notice Rachel that you have Graves. Read Open Original Shared Link and you may have get inspiration.

Actually Graves Disease is OVERactive thyroid....it means the thyroid is already producing too much hormone all on its own. People with Graves do not take thyroid hormone replacement....that would just worsen the problem.

In my case I had radioactive iodine treatment to treat Graves and shut down my thyroid for good. :(

Now I do need to take thyroid hormone and I'm definately not undertreated.....I already take natural thyroid (Armour) and I'm doing fine with it. :)

My Hypothyroid symptoms consist of dry hair, hairloss, dry skin, carpul tunnel, orange spots on my palms and fatigue. I dont get Fibromyalgia symptoms when I'm not on enough Armour.

I think I am actually on too much Armour right now and will be decreasing my dose after I get test results back.

rinne Apprentice

Evie, I have been wondering how you are, I am so sorry to hear that you are feeling weaker. I hope that you will be feeling better soon. I am keeping you in my prayers, I am so glad you posted.

Rachel--24 Collaborator
Sorry to break in here...am going to Dr. soon..still having bad diarrhea, worse. not be surprised if hospitalized..getting very weak..your prayers and concerns have kept me going...thanks so much.

Love to all, evie

Evie,

I was worried about you all weekend. I was hoping to hear back some good news. :( What are they giving you for the C.Diff? I'll continue with the prayers and I'm glad you are gaining some strength from the support and love from the people here. Get well soon ok. :)

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    • lmemsm
      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
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    • max it
    • cristiana
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    • 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.
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