Omg...i Might Be On To Something

[melmak5]

There are at least three New England Journal of Medicine articles on Celiac Disease, one on the problem with non-responsive patients who are diet-compliant, but react to inhaled gluten.

If you have access to a library that subscribes, you could print those out.

If not, the Beth Israel Deaconess Medical Center's website might be helpful: Open Original Shared Link

(I am assuming Columbia and other centers have similar definitions)

Hello,

I have a favor to ask all of you. I need to prepare some info on Celiac for my 504 meeting tomorrow. Does anyone have any good sited info that I can give to the panel of people? I also am looking for something that talks about glutening in general, so they know that when I am glutened I need to stay home, but some sort of scientificness that backs it up. Thank you for any help!!

Kassandra

[CarlaB]

Hi everyone!

Rachel, I use raw cacao beans that I grind in my coffee grinder for the fudge I make. It makes them into a powder that could be added to other things. That might be a way for you to get the chocolate without all the sugar and other bad stuff.

I've been feeling pretty good for a few days now, so have been busy.

Donna, have a wonderful cruise!

Patti, good luck with the move!

[Rachel--24]

Hi everyone!

Rachel, I use raw cacao beans that I grind in my coffee grinder for the fudge I make. It makes them into a powder that could be added to other things. That might be a way for you to get the chocolate without all the sugar and other bad stuff.

Carla...I'm betting I probably wouldnt tolerate them. Its totally random...I cant tolerate every chocolate I've tried except for what was in that one brand of ice cream and now this one type of chocolate chips.

Its not like I can *totally* tolerate it...there are some side effects...just not as severe as with the other chocolates. I would never be able to eat most chocolates on a daily basis.

I'm gonna have to slow down on the chocolate. I got a couple pimples cuz I'm eating so much of it.

Andrea,

I sent out my email to Andreanna so I'll let you know as soon as I figure out if I can schedule an appt. or not.

I talked to my boss about it today and Nov. 1st is not gonna work. I didnt realize it was next week...she said no way...its too soon.

These are the weeks I have to work with as far as taking vacation and going to WA.

Nov. 4-11th

Nov. 25 - Dec. 1st

Dec 2nd - 8th

Dec 9th - 15th

Hopefully there will be something available during that time frame.

My boss said I can go any of these weeks...if its gonna help me to eat more foods she's all for it.

[AndreaB]

These are the weeks I have to work with as far as taking vacation and going to WA.

Nov. 4-11th

I've got a tentative set for Nov 8th at 9:00 am. The next one after that is Dec 10th. I told them I'd call and confirm or cancel sometime this week.

I'll go look up flight info just in case. Hoping Andreanna isn't too hard to get in with on the other hand though. She sounds like she's very busy.

[AndreaB]

Rachel,

I emailed you what I found for flights.

[Green12]

Yay Donna, your cruise

Carla, that's awesome you are feeling really good lately!

Patti, good luck with the move

Susie, thanks for the chocolate scientificness . Hope your son feels better soon.

Kassandra- I was going to say check out this site there are lots of informative articles and links, start with the "Site Index" at the top left.

A mini Rachelville get together, how exciting! Take pictures, give us details! We will be there in spirit with you

All this talk of chocolate.....I've been wanting chocolate soooo BAD lateluy, Halloween is my weakness. I always have something of the chocolate variety, but I am trying to be good. I'm on a lot of homeopathy and I don't want to take a chance interefering with it doing it's thing.....sigh....

So with Halloween and Thanksgiving coming up I experimented with the Namaste Spice Cake mix and made the most fabulous pumpkin spice bars, it's a keeper recipe for the holidays.

melmak- I got to thinking about your situation and something that popped into my mind was slippery elm gruel. I don't know if you could tolereate but it is highly nutritious and soothes the intestinal tissue (really all the way down from the esophagus)

I take it during heartburn attacks, and after to soothe the tissues but it has multiple purposes.

You mix 1 tbsp of slippery elm powder into 1 cup of cold water and wisk in a sauce pan over medium heat until it just starts to come to a boil. (You have to watch it carefully and wisk constantly because it gets thick.) It will be a little thick, if too thick to drink add a little cool water and wisk in until desired consistency.

I don't know if it would work for you or not but it was just a thought I had

[CarlaB]

Rachel, I was thinking that since chocolate was made from cacao with other ingredients that the pure stuff might settle okay ...

Julie, last year I made the Namaste blondies and added a can of pumpkin to it. It was GREAT! You don't need to make any other adjustments to the recipe.

[dlp252]

Drive-by update

I GET TO STOP MY ALLERGY SHOTS!!!!!! WOO HOO!!!!!

And, speaking of Thanksgiving/Halloween....I've just started my 2nd annual pumpkin pie vigil (and had some help from a very nice store bakery clerk who could see the glazed crazed look in my eye), and you'd better believe that I'm going to buy every one of them I can find this year and freeze them in individual pieces, lol

[AndreaB]

All this talk of chocolate.....I've been wanting chocolate soooo BAD lateluy, Halloween is my weakness. I always have something of the chocolate variety, but I am trying to be good. I'm on a lot of homeopathy and I don't want to take a chance interefering with it doing it's thing.....sigh....

You can do it! Not eat it that is. We're in the same boat. Mitch doesn't want us to have it if it has lead in it. I miss my chocolate.

[AndreaB]

I GET TO STOP MY ALLERGY SHOTS!!!!!! WOO HOO!!!!!

YAYYYYYYYYYY!!!!!!

Pumpkin pies......those sound good.

[jerseyangel]

Drive-by update

I GET TO STOP MY ALLERGY SHOTS!!!!!! WOO HOO!!!!!

And, speaking of Thanksgiving/Halloween....I've just started my 2nd annual pumpkin pie vigil (and had some help from a very nice store bakery clerk who could see the glazed crazed look in my eye), and you'd better believe that I'm going to buy every one of them I can find this year and freeze them in individual pieces, lol

Yippee on the allergy shots!!!!

I remember last year, talking about freezing the pie in separate pieces So glad you're going to get to do it this year

[Clark Bent as Stupor-Man]

rachel, just letting you know your inbox is full...

[Rachel--24]

rachel, just letting you know your inbox is full...

Thanks Charlie.

My box is almost always full....I'm not very good at deleting stuff. Always saving pm's "for another day".

Yeah....I'm as bad with my pm box as I am with the real mailbox at home.

I'm a chronic lagger.

I'll clean it up now. If anyone else tries to pm and its full....just yell at me here....its about the only way I end up deleting stuff.

I've got a tentative set for Nov 8th at 9:00 am. The next one after that is Dec 10th. I told them I'd call and confirm or cancel sometime this week.

Why did I think it was for the 1st??

Thats what I told my boss....the 1st. She was like.."Ummm...NOOO."

Duh....I didnt even realize the 1st was next week.

Shooot....that means the end of my "pinkness" is rapidly approaching.

I'm really dreading that.

I'm gonna schedule with Amy for the middle of December...in the meantime if I go up there it will be to see Andreanna since I'll be seeing Amy in about 6 weeks anyways. You can go ahead and cancel...but thanks for trying.

[Rachel--24]

This was posted on Lymenet..."Chemicals and body burden"

Open Original Shared Link

[AndreaB]

Why did I think it was for the 1st??

It was the 1st.....I called and changed it. I'll call and cancel it tomorrow.

I'm hoping Andreanna will be able to get you in that same week so I can stop by the clinic and pick up supplements since we'd be up that way, instead of having them mailed. If not, no problem. We'll get you whenever and be your chauffer.

[AndreaB]

This was posted on Lymenet..."Chemicals and body burden"

Open Original Shared Link

Interesting article. Since my children have been tested by ASYRA I know that they have chemical burdens as well. Plastics is one that came up with Talitha as well as Micah. Probably will with Seth since everything is plastic. We tried switching him from a plastic sippy cup to a stainless steel covered cup I had from awhile ago. It's not leakproof and he wound up spilling alot of water on himself so we went back to the plastic sippy cup.

Other things came up as well but I've read of plastics and early puberty recently on Mercola's site.

[miamia]

Hey all-

Rachel-

I also seem to react to the vitamin C I told the nurse the week before last not to give it to me. But last week she gave it me and I just got it because i know how helpful it is- but it was a big mistake I am sorry you also had a negative reaction to it.

I am also jealous you guys get to meet. One day we really ahve to have a rachelville reunion!!

Donna-

Have a great time on the cruise!!!

Patti-

Good luck with the move!

Today I have chelation and colon therapy I am so worn out I feel like just staying home under the covers with my phone off and my hot water bottle on my belly!!!!

I had a foot bath yesturday the water was ickier then the last few times - it actually seems to be ickier each time I am hoping this means my detox pathways are opening up alittle more and releasing more of the toxins.

I am really thinking of just investing in a foot bath becasue realistically in the end it would probably end up saving me money.

Question : DO any of you guys know about plant sterols? Just curious.

[melmak5]

I give up.

I ate no new foods last night. All old "ok" foods and at 1 in the morning was awoken with sharp intense chest pain (7/10). It burned so badly. A third of a bottle of pepto later, it started to quiet.

I spent a good hour on the bathroom floor wishing I could puke it up.

The last time I ate was at 8:30pm.

What gives?

[covsooze]

sorry you've had such a bad night. What were the foods you had? Did you take any supplements or meds? Have you used any beauty products? Lets help you get to the bottom of this.

Hugs

Susie x

[melmak5]

Baby formula

Potato chips

Baked chicken

Handful of cashews

Stewed prunes

I ate all of these things successfully the day before.

I feel like I am going to loose my mind. I feel like there is nothing I "can" eat. Someone brought in banana bread here at work and I am full of rage. Its not there fault, but I hate them and it and bananas and everything.

I am so done with this. I am sick of being sick, I just don't know how much longer I can do this. I don't mean to be melodramatic, I just cannot physically keep doing this.

[Clark Bent as Stupor-Man]

what do you guys use to get omegas?

I took some flax oil at times earlier this year but briefly read some information on lymenet a few months ago about flaxseed oil potentially having some adverse effects for those with lyme... I still might get some more flaxseed oil but I'm just curious what you all are using...

I think I remember rachel considering hemp oil (or was it hemp milk) at one point and donna also asking a little while ago about omegas so I don't know if either of you decided on something and have done well or not with it...

also, are there concerns with using any fish oil products due to mercury or is that not a concern at all? I don't even know exactly where the fish oil even comes from so I don't know if this would be a practical concern or not... if not, I might just go with carlson's or one of the other quality fish oil brands though I'm not opposed to trying something new like a hemp product if others have found it to agree with their systems..

[covsooze]

Hey, I really feel for you. I've had similar problems and a lot of others have here too, so you're in the right place

Some thoughts of mine...please forgive me if this is a repeat of any info that's already been posted here.

It sounds like really bad reflux. Are you taking anything from the dr to help with reflux? Could you have an ulcer? Or even a hernia?

If either of those are possibilities, you need to steer away from fatty stuff, which is what the chips and the cashew butter are. Also, nuts are a very common stomach irritant, so you may be best without them. I've read here before that cashews are bad for mold also.

Have you tried lemon juice in hot water? Sounds crazy, but Carla suggested it to me and it really does help.

Another soother is fennel tea and I think Julie mentioned slippery elm.

You are understandably frustrated about having a reaction to something that you didn't the day before. This is my experience too. If my esophagus is already damaged, then more things will irritate it than if it's OK. Also, you might find that having the same thing day in day out makes stuff worse.

I understand how you feel about the banana bread. Bananas would definitely irritate me and work colleagues can irritate even more, even though they don't mean it. I had a box of croissants arrive for me last week at work It was a marketing stunt. Fortunately, I was so busy at the time I saw the funny side of it, but these things often don't help.

One last quick point: is there anything at all that could be glutening you? obviously not your food, but any family members kissing you and passing on crumbs? Beauty products? Crumbs? Wooden utensils or scraped pans? The reaction you described is like the one that ended me up in the ED after which my ceoliacs was diagnosed.

Keep posting so we can try to help you.

Susie x

[covsooze]

sorry - that last post was for melmak

[dlp252]

Charlie, I haven't found any supplemental omega 3s yet that I can tolerate. I've tried a few now and with all I seem to have some adverse reaction.

[melmak5]

Thanks, covsooze, I appreciate it.

I was on 2 different acid reflux meds back in April - they did nothing but make the regurgitation taste less bad.

I had an endoscopy in May, no biopsies done, because the tissue looked perfect.

I had an esophageal motility test - normal.

I live with two roommates. I have separate everything and they respect my space/utensils/tupperware, so no, gluten is definitely not a possibility.

I changed all of my beauty/skin stuff months ago.

I cannot do citrus or anything with sugar, I regurgitate it.

The fennel might be a possibility.

I just want a new body. This one is no longer functioning and I am done. I am done trying with it, I just want it to stop all of this nonsense or give me some feedback that I can actually use.