Snow Angel
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Sinenox, A New Haven Group...Really??...Let me know..i'm 5 min away.
edit: I see it in the meetup area...i'll catch up there.
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I just called them (I drink Awake Tea, so I had a box here with their phone number)
I was told that the Organic Iced Greentea was gluten-free, as are all the bagged leaf teas.
Enjoy!
jerseyangel, ..I've had their Wild Orange & Earl Grey since celiac so far so good ..but on their website it says (and ofcourse I just rechecked 1min ago)
All of our teas are gluten free, except for the following: Green Ginger, Tazo Honeybush and Lemon Ginger & Tea LemonadeThe first two are bagged teas, last two bottled.
So the customer service rep is right about the Organic Ice Tea. But either the rep is wrong or the website is, about the 2 filterbags... I plan on avoiding those.
Open Original Shared Link [click "what is Tazo" click "Faqs" ]
(took me an hour to find it the first time
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Thanks Snow Angel
I didn't think any tea had gluten in it, I'll look into that. I think I am just allergic to green tea because I didn't get the same reaction as I do to gluten.
You welcome, maybe your reaction is for another reason or barley feels different then wheat.. idk... I haven't figured it out & probably never will.., but unfortunately if you can't eat gluten then you can't trust any prepared food or DRINKS. (so far bottled water hasn't done me in Yet!!) I just hope it goes away for you.
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In the US, Teva's Fexofenadine was listed as safe a/o 02/07 in Wheaton Support Group list. You can get a copy here.
Open Original Shared Link
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green tea made me break out in horrible hives
Some green tea is gluten free, some is not...check your brand. I have read some have barley but I think that is in restaurants. I don't know what it is in tea that would be gluten otherwise. He is my current list of gluten-free teas. I have checked the websites just recently.
Tazo Tea 10/08 All of our teas are gluten free, except for the following: Green Ginger (teabag), Tazo Honeybush
(teabag) and premade drinks: Lemon Ginger (bottled tea) & Tea Lemonade (bottled tea).
Stash 10/08 All of our teas are gluten-free.
www.stashtea.com/teafaq.htm#21
Celestial Green Tea: 10/08: Green tea, Organic green tea,Decaf Green Tea, Decaf Mandarin Orchard Green Tea, Honey Lemon Ginseng Green Tea, Raspberry Gardens Green Tea, Blueberry Breeze
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How much did it cost? I'd love to have professional help but am already in the financial slums as it is.
You can go to the Catholic Family Services Centers around the country, they provide very reduced fee therapy, for low income. I know someone interning there who also does an eating disorders group. You do not have to be Catholic or religious to use their services.
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I use grapeseed oil to remove makeup (so cheap), & I use my coconut oil for a moisturizer.
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I did try TJ's corn chowder this weekend and had mild gluten symptoms (dh & bloat) from either that or CC in my home. They follow "good manufacturing practice" so its really hard to tell. I am tempted to try it again when my BF's not home touching all my stuff with his gluteny hands. I always stock in their lentil and veg. chille, ate it forever, now im scared.... I so far have always had good luck with Amy's gluten-free soups/products, the soups are fantastic, my local shop is finally stocking more variety.
TJ's site
all Trader Joe's private label suppliers follow Good Manufacturing Practices (GMP's). We work closely with all of the companies that manufacture our products and require that they are vigilant about minimizing and monitoring any potential cross contamination risk. Some of the steps taken to prevent cross contamination include education and training of employees about allergens, careful labeling and segregation of allergen ingredients, cleaning of lines between production runs and stringent scheduling of product runs. Manufacturers may even use alternate days to process products that contain allergens from those products that do not. -
What I have is healing up, so I think I will have to wait for another outbreak before I see a dermatologist.
Good grief.
No need to wait, just eat alot of Wheat ..bread, shredded wheat, cream of wheat, wheat farina, add wheat germ (yuck)
you'll be itchy, flaring and miserable in no time at all. I have read here that consuming iodine will help bring it out.
I never bothered to biopsed my rash ...I figured out what it was the first time I went gluten-free for gastro problems, I was surprised by the end of the week I wasn't itching anymore, and no one was yelling at me to stop scratching. Went back to gluten for testing & rash came back. Those tests were positive so I dont feel the need to pursue it.
I understand it is hard to find a dermatologist who knows how to do it right... biopsy next to the lesion, not on it. I hope you can find a good derm.
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scully...I found this site really helpful (8 whole pages of pics)
Open Original Shared Link
It shows many variations of DH rashes in regular people. Mine is exactly like pics 72-74, of the womans upper back, shoulders, both upper arms & I have all those lovely hypopigmentations left behind too.
It is hard to see in pics but your scratched up red bumps do look just like my scratched off red bumps.. lol.... maybe here you can see the stages of development that we just can't always catch on camera.
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I had some bloating and mild D on two ocassions I ate them and couldn't rule anything else in. I had purchased it with coffee in the snack bar on campus , the 2 thing I can eat there- well just 1 now, coffee.
Thought maybe it was the coffee but i drink mine black & it doesn't happen when i drink coffee w/o the three musketeers. So yeah i had suspected something up or that i was just weird. (could be both
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henny ..I have 2 tanks running right now and I'm worried about the same thing. One of the people (Ed) on my tropical fish boards makes fish food, alot of the members say their fish LOVE it. I haven't ordered it yet..its next on the list.
Open Original Shared Link
He hates wheat gluten, not good for fish. This is on his site
The proteins in "Almost Natural Tropical Fish Food" are all naturally whole proteins, and very good proteins at that, and come directly from the ingredients. However, in other fish foods that are on the market, anybody can add a bunch of wheat gluten, for instance, among other things, to increase crude protein levels very easily. Notice that you did NOT see wheat gluten, which is not even a whole protein, nor any other type of protein boosters in my tropical fish food. -
I reacted to Provigil too, didn't notice until I went gluten-free, I take it PRN, every time I took it Chronic D
...days I didn't take Provigil NO D !!Trust the body ...the body knows.
I just this week had my doc switch me to Adderal. Much Better.
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At 6 yrs old I would want "fluff" , look at the Smuckers Marshmallow Topping... they say its gluten-free...I don't know about CF.
Open Original Shared Link
or you could try the Ricemellow which is vegan & gluten-free,
...you didn't say you wanted healthy
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I explained to the doctor that I expected a false negative, and she told me that was impossible. I already knew better, but she didn't want to hear it. An antibody is always there, so it won't go away if you quit eating a food, she says. We know better here, don't we?
Anyway, here's my results after being mostly gluten free for more than a month with two days of reexposure before blood draw:
TISSUE TRANSGLUTAMINASE, IGA
4.93 0 - 20 UNITS Fin
We don't know if your IgA deficient, I have 5 IgA & still made 5 antibodies to tTg IgA. I know what all of them are up to...lol
You might have had a shot showing tTG IgG after a month, (it may be still high - idk), but IgA goes down real quick. It is very sad when the patient knows more then the dr. You should find a competent gastro, they can see other things (anemia, nutrient deficiencies) in your past labs. Get more tests if you need too.
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Call the lab - they can fax it, mail it or tell you on the phone (get ranges). I cc myself on all my labs so they get mailed to my house...the quest near me say's I can stop in and pick up a copy of the report, but I haven't needed to do that.
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Hi mosaicmom, I tend to agree with happygirl, when I did my trial diet, I found I could no longer eat many of the raw veggies ..can't do apples either...Must just be too hard on my system right now as i'm too new at this.
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Did you notice-- he said, "I was gluten-free for 12 years," not "I have been gluten-free for 12 years?" Implication is that he is no longer gluten-free.
(arrrggghhhh--trying ....to...hold....my..tongue.....
)I have read there a little for several weeks now and I believe its because he found he's not Celiac...or believes that to be the case anyway...I really hate the arguing over there..awesome post Fiddle Faddle.
"Open Original Shared LinkDue to a misdiagnosis, I was on a gluten-free diet for 12 years. I never felt any difference though...not even one bounce.
Ron
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I totally agree with Ravenwoodglass, very good suggestion. The doctors sound like good ones--so glad you found them.
Seems like there are more tests for deficiencies that could be helpful but it could be they are not in the typical lab arena. Seems like a good stool test for intestinal flora, parasites (but they are hard to catch), residues (looking for fat, protein and carbs that indicate you are not digesting) and bile, stuff like that.
From my experience I'd say the Vitamin D is super important and you may need a lot of it. Be sure they moniter your levels and get them up to the newest standard levels, not the old ones.
Hi mftnchn, We did run some of those you suggested but we never did the culture stool or the O & P w/ giardia. Never looked at residues either ..what is that one called..? I did tell them my poop was green sometimes from the bile. They said it was because of fast transit time. haha.
h.pylori = not detect.
These are my typical Vit D levels, even with supplementing 2200ui's for months & after vacation where I was very tan, I would have though that might help.
Vit D, 25 OH, total = 24
Vit D, 25 OH, D3 = 24
Vit D, 25 OH, D2 <4
We re-ran them this summer after I went gluten-free about 3 weeks total, and was not tan.
Vit D, 25 OH, total = 30
Vit D, 25 OH, D3 = 30
Vit D, 25 OH, D2 <4
I've never hit this high ever..! this said alot to me.
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If this biopsy does come back negative are you going to rescind the diagnosis?" I have a feeling the answer is going to be no. They do sound like they know what they are doing and clearly recognize that you are celiac.
ravenwoodglass... thats a good idea, I think your right and I am just being paranoid, I have come so far in this, I need hand-holding and re-assurance.
Thank you happygirl ! it is nice to 'officially' meet everyone ..Welcome to the board - we are happy you came out of 'lurking'
oh neesee thats terrible, but it does make me feel better to know that it's possible to still show damage and get an accurate test in some cases. I feel more confident in the gastro's directive.I had been unable to eat for a month, and I still got a positive biopsy.I appreciate all the replies thanks,
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Hi, I'm finally coming out of lurk dome... been here a few months.
History:
I had my Doc test me for Celiac after I finally tried a 7 day gluten free diet ...I had removed all other food types over the last 15 or so years ..and never thought about this one.
The first time lab only ran IgA for celiac panel and found IgA deficiency, < 5. I went back to eating gluten for 2 weeks and had the 2nd draw and then stopped, (I needed relief)
I get the report back and the lab runs the IgA again..I wanted to die at the thought of eating it again, but went back for another 8 days to get the IgG test... that showed positive in blood tTG 60 (<10), lesson learned..do not stop eating gluten.
I have classic symptoms plus some from what I've read here. I have the chronic D, symmetrical itchy rash (that nothing ever worked on), malabsorption, Iron & B-12 deficiency (b-12 is better cause I've taken sub ling for years now), Low Vit D, nausea, unexplained anorexia, narcoleptic like fatigue, hypotension, dizziness & vertigo, brain-fog, bloated hard stomach, horrific abdominal pain, chronic migraines, fibro, asthma, amenorrhea, fun neuro stuff (occasional ataxia & slurred speech, visually- inanimate objects move, tinnitus & pulsating- other strange hearing things, double vision, tactile problems)...and a host of other stuff I’m sure I’m forgetting.
Dx: Hashimoto's, I've had that for 7 years, I took levo/syn for the first 6 and it never worked, I take Armour now - it’s much better.
And my adrenals are not good, I just went to a third doc who said my hypothalamus is pretty much shut down. Last doc did small dose of cortef, some stuff cleared up and I was able to gain some weight 14 lbs, (it looked like edema though) but doc pulled me off it.
Family: Irish, German, Swedish and Danish. Many are autoimmune sick too.
You guys still with me
It took 2 months to get in to see one of the top specialist gastro centers in my state. They were FLOORED no one recognized my Celiac all these years. I've been go to docs for years chasing my tail for all these OTHER problems since 1994.(Ortho -Neuro -Psych - ARPN - DO - ND- OB- GP's - Endo - Allergist - Immuno/Pulmonary) WOW ..when I write it out like that ..it really hits home.
Gastro:
I am really impressed with the gastro doc's I saw, they said "You are definitely Celiac" we need more labs, liver function w/reflex, the fat-soluble vitamins, the DEXA Scan, and the Endoscopy, and "I want you to stop eating gluten right now" I said "WHAT !!" " Won't my biopsy be negative, everything I read at the Columbia medical center said not to stop gluten until all testing is completed !!"
They said "No, we will get it done in less than two weeks, I can assure you, it won't be negative, we can't risk refractory sprue." then the other said we're concerned about lymphoma. I have had swollen neck glands forever...and I did have one removed in my lower groin area when I was a kid because it got really big and popped out. I told them I will not put gluten back in my diet ever again once I remove it and I need the gold standard dx because I don't ever want to hear another doc try to mess with my head and tell me it's an IgA thing or something ..plus I need my family to take this very seriously and go get tested ..they said " It's really Ok to stop, It won't be negative that quick"
What do you think about that ...? What would you do if you were me ..? Does anyone have experience of a 1-2 week gluten-free person still showing positive on a endoscopy and biopsy ..? I have not stopped eating it yet - I am researching this.
Thank you everyone who took the time to read my dissertation.
Does It Sound Like My 20 Month Old Could Have Celiac?
in Parents, Friends and Loved Ones of Celiacs
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Janelle...I have to add my 2cents.. not necessarily celiac related
Might want to follow up with this, preferrably with an immunologist who knows about hypogammaglobulina..You can get good doc referrals from Open Original Shared Link if you call/email them., (they have a forum too) ...I am not familiar with pediatric ranges, they are lower than adults because once they stop getting yours from the placenta they have to start producing on their own and can have transient phases of low values, so this could come up and be nothing to worry about. Some subclasses like IgG2 may not be fully developed until after 8-10yrs.
But..your DD is 50% below range, IgG2 (the most common deficiency in kids) makes up only about 20%, and she has too many symptoms to ignore..that are VERY common for immunodeficiency. You should have her total IgA count if they did celiac tests. See if that is low/ below range too, that addition would also be a indicator of a problem here. Because of her age testing will be harder, but they should check IgA, IgD, IgE, IgM and subclasses IgG1, IgG2, IgG3, IgG4.
How high are her platelets- have they just been trending up and now over range or was it a one time #? a little elevation can be chronic inflammation/anemia...alot high is NOT good. Point that out to doc when you call. How's the WBC? any low? high?
Other good info @ Jeffrey Modell Foundation / national primary immune defficiency.
the domain name looks weird but its the right place ->Open Original Shared Link
I'm sure i worried you ..i'm very sorry, I don't have perfect information & I don't understand these problems for young children - please keep that in mind.