
KathiSharpe
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When I hear "poop" and "black" in the same sentence, I automatically think "blood" -- has your doc checked him for that?
That said, my husband and I get what we call "sand poop" several days after recovering from an illness. It's odd, but pretty consistent.
But if for your child it's consistently the oats causing it, I'd keep him on nut milks or homemade rice milks instead.
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the portable cacoon might work, lol. I'm so sorry! I imagine I would have done the exact same thing. Good lesson for her, though. And you, too, I suppose. I always hate to make people feel like they should make anything special just for me in such situations. I guess this is a good reminder to always bring something on your own. I seriously doubt anything like Alka-Seltzer will help as that only affects certain aspects of our digestion. The only thing I have found to help make it thru is antihistimines and Tylonol. I get drowsy with it, but its the only thing that makes the symptoms I have bearable. Fortunately for me, I am a stay-at-home mom, so I don't have to worry about really functioning out in public during those times. I can curl up in bed and sleep. I'll be interested to see if anyone else has any viable solutions for you.
Benadryl? Really? Thank you!! I wonder if I have some lying around that I could take. Even if it doesn't "cure" it, the sleepies would be welcome...
At this point, the "I ate a window pain and chased it with gasoline and a live hedgehog" syndrome has begun. I'm in so much pain I'm about to cry.
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Went to a friend's birthday party last night. The hostess, bless her heart, greeted me at the door almost in tears. "I didn't know what you could eat and I was afraid you'd be upset if I asked you but now I'm afraid there's nothing here you can eat. You can eat a hamburger can't you? Please say you can."
So, of course, I did.
The hamburger itself MIGHT have been ok (but it was of the pre-formed frozen offbrand Bubba-burger sort) ... Cooked on a grill with multiple seasonings and previously toasted bread. And hot dogs.
But what could I do? Just eat a slice of tomato and smile? She'd have spent the evening so upset over it all.
Next time someone grills out, I'll volunteer to bring my own hotdogs (cook in tinfoil) and a big bag of gluten-free chips to share.
But this time, I'm stick with raging nausea, a terribly hurting gut, horrible moodiness, joint pain, itchies, malaise, and a headache right behind my eyes.
I know that the goal is to never get glutened, but I also know that unless I move to a cave somewhere, this will happen again. Is there ANYTHING one can do to help get past it quicker?
I considered eating and then (I know it sounds gross) making myself throw up later. It wouldn't get all of it out, but some?
How about activated charcoal? Huge amounts of Vite C? Alka-seltzer?
A portable cocoon?
Anything?
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I have never seen proof either. I read last week, that 1 in 20 type 1 diabetics are celiac, it has something to do with the same gene types.
What happens is gluten intolerance causes vitamin and mineral deficiencies, which then open the door to other auto-immune diseases, and other issues. My neurologist believes my neuropathy is a direct result of my B12 deficiency caused by gluten intolerance. It's like 1+1= 2.
If most of us had known about gluten, and it's dangers, we may not have developed other issues. Nothing is for sure though...not enough is known about gluten intolerance and all it encompasses.
There does seem to be a connection with gluten and autism, ADHD, crohns disease, neuropathy, thyroid problems, sleep issues, etc.
Hi Chezza,
There's a few recent discussions on here about PCOS+celiac ... but let me add my current personal experience to the list.
A ways back the docs suspected PCOS and so sent me to a gynecologist who confirmed the dx. My primary symptom labs-wise is outrageously elevated testosterone. Despite an assortment of meds, it just kept climbing higher and higher.
In addition to this, my thyroid levels kept getting more and more hypo- my last TSH was 91.
Fast forward. My research never found anything conclusive but I kept seeing links, nuances, hints, that both thyroid and PCOS have a gluten intolerance link. I'd been gluten-free years before, but after a doc told me I was not celiac, I resumed eating gluten. Most of my current health probs showed up in the 2.5 years or so I've been back on gluten.
August 1, I decided, "Hey - if I'm suspecting a link, I should go gluten-free just for a couple weeks and see what it does to the labs."
I saw a new endocrinologist on 8/18.
My celiac bloodwork is negative (she's sending me for biopsy)... BUT...
- my testosterone level is now actually slightly low (and my cycle this last month was the most normal it's been in years).
- I'm losing weight rapidly (17lbs total so far) when I was unable to lose weight before no matter how much I dieted.
- My stomach issues are gone.
- I have boundless energy.
- She's going to re-check my thyroid in about 3 weeks to see if that # is normalizing now too... we suspect it might be!
So - based on this, she's put in my medical records that I have a severe allergy to gluten and under no circumstances should I ever eat it again - regardless of what the celiac tests show.
It'll be interesting to see what bloodwork turns up in a few weeks!
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I think the first thing I would try is using 2/3 tapioca to 1/3 cornstarch. The corn starch has a heavier consistency than the others, so it might be more like 2/3-plus-some and 1/3-minus-some to make it taste like the original.
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It sounds like you're looking for more of a sit-down restaurant, which I can't really help you with... but I was in the Raleigh area twice last week and discovered that
a) the mall on 540 has a starbucks that still had quite a few gluten-free orange valencia cakes left
Five Guys, which is a burger joint with locations all over the area, made me a ROCKIN' hamburger and fries - all natural meat, and potatoes are the only things fried in the whole store so no CC issues with the fryer. (They do cook with peanut oil and serve peanuts in the store, so if that's an issue you might not want to go there)
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I *love* SunButter!! It's made from sunflower seeds and is gluten-free and nut-free. It tastes looks and spreads almost like peanut butter... in fact, if you were to serve it to friends and say, "It's a gourmet peanut butter" they'd be delighted with it
I would be very, very careful about using other nuts, because the possibility for cross-contamination with peanuts is quite high.
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Betty's recipes are pretty good as far as proportions and all go, but I no longer use the bean flours since I discovered cornmeal - google "gluten free goddess" and see the recipes there.
I did previously make LOTS of bean-flour recipes and developed many of my own; if they're gummy it's usually because you're not baking them long enough.
I do remember having gummy troubles though when I used my stoneware bread pans... not sure why!
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Three (no actually 4) things I would do, if I were in your shoes -
#1 - try Olive Leaf. It's a supplement that my Mom uses; she hasn't had a respiratory infection in years. WalMart sells a gluten-free version of the stuff very inexpensively.
#2 - get checked for parasites; look at sites like curezone.com and humaworm.com and cross-ref that info with your doctor (and if he poo-poohs the whole thing, consider self-treatment)
#3 - ask for a referral to a doctor who specializes in immune system problems. Long-term antibiotic use when the antib's aren't working indicates problems of some sort - either you're on the wrong ones, or you're not fighting infection the way you should, or something is going on.
he said that was just because I'm not used to being sick.#4- Tell the doc that you don't plan on getting used to it, either, so he'd best send you to someone with a different attitude toward health and wellness.
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Hi Kathi-
I am curious to know which came first for you: the hypo-t, or the gluten intolerance?
Hi Betty!
I'm not sure. It's a lot easier to answer, "Which came first, the chicken or the egg?"
My KNOWING ABOUT the hypo-t came first - quite a few years ago - but it was all nicely controlled by meds with few complications until relatively recently (over the last 5 or 6 years).
But if I'd been gluten-free from childhood would I even have hypo-t? now that is an interesting question...
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Answering a couple questions -
#1 - Dr. Balen (endocrinologist) is in Greensboro, NC. I can post the name of her practice, phone #, etc. if anyone's interested. She's part of a largish conglomerate of docs of different specialties.
#2 - I'm 99% sure that she will be referring me to the GI docs within her team either to do more advanced testing for diagnosis, or if the labs come back positive, to check for cancer and other trouble.
#3 - I've only been gluten free for 18 days - she said generally speaking 3 months for it to be false-neg on the blood test. However if it's negative we're not stopping there, so it's ok.
#4 - I'm going to have to research on the 5-year endoscopy thing. I've never had a 'scopy of any sort and I'm hoping to avoid them as much as possible
I try to balance my own health and sanity with what docs want to do, which might mean having one now, and then having one in ten years, or something... unless they can use the little camera, or MRI technology.
She did allude to "the longer one goes before diagnosis" and also "if you cheat on the diet" - she didn't say in so many words, but I have read that those people tend to be at higher risk for complications. Given that I'm pushing 40 (and pushing hard!) I'd definitely fall into the first category.
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I am so encouraged by my appointment with an endocrinologist yesterday that I'm practically floating on air this morning.
I sort of unloaded on her - all the gastro problems, the off- then on- again gluten free lifestyle, the possible false negative blood test due to me being gluten-free at the time (she was outraged that a doc did that!)... the complications from the synthroid and the other doc's refusal to put me on something else...
And so here's what she's said -
#1 - a diagnosis of celiac disease is absolutely essential. She says all celiacs should have endoscopy to look for (lyphoma??) cancer of the intestines, and this should be done every five to seven years. She alluded to other potential complications but didn't say what they were.
#2 - Even if my tests come back that I am not celiac, I should stay gluten free for life. Period. No more arguing or going back and forth, and no more doctors telling me I'm off-base or silly or wrong, because *obviously* gluten is my problem. She's already put in my chart that gluten-free is a necessity for me.
#3 - She's going to arrange for a compounding pharmacy to make all my medicines - gluten-free and acacia-free (a binder that might be what gives me trouble with the synthroid). She might even be able to get them to combine everything into one pill (bliss!)
#4 - Despite other doctors looking at me like I just stepped off the spaceship, there IS a link between gluten intolerance (celiac and otherwise), thyroid disease, and PCOS. (She also knew that there's a LOT of overweight celiacs out there who lose weight once they go gluten-free)
This is what I was hoping and praying for!
So it leaves me with a question. Someone gave me a helpful list of tests that should be done, but I forgot to print it out before I left. What Dr. B ordered was a "celiac panel" -- is that the same tests? Or, when I go back, should I ask for more?
Thanks everybody!
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I was at the health food store the other day and discovered something called Job's Tears. They're a largish grain/seed looking thing... I actually thought that each grain looks like a cross between barley and a black-eye pea.
I inquired and the staff was pretty sure that it's gluten-free, so I decided pretty sure means "don't buy it yet". Researching online I find that they're not related to a barley at all and they seem to be gluten-free.
Open Original Shared Link
Anyone eat this? I thought if it cooks up somewhat soft but firm it would be a great side dish, or a barley replacer in stew.
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Corn on the Cob on a stick with butter (bought at a market place... could this be it?)
That looks like the #1 possibility... tho my initial reaction would be "how". If I was gonna cook corn on a stick it would be in plain water with some butter or margerine. Cross-contamination, or maybe they put some boil (seasoning) in the water????? Lots of spices and seasonings have gluten and it's not exactly declared well on the labels.
The other possibility I can think of is that you cooked a gluten-containing food on your grill (er... barbie) previously, and tiny amounts remained.
There's a great list here on celiac.com of foods and ingredients to avoid - (back up to the main celiac.com page and it's linked from there) BUT you'll probably want something Oz specific (assuming you're Aussie because of the 'roo and barbie reference, but it's getting to where you can get kangaroo meat here in the US too <yum!>)
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Jenny, is there a difference in muscle tone before and after? I know with me, my legs and arms are building muscle like crazy - something I could never do whilst eating gluten.
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If they have a dedicated frier, we eat the fries.
Even if there's grease+crumbs from other products in the fryer (droppage)??
Just curious.... it seems like some people (like me) are far more sensitive than others to the minute presence of gluten. McD's fries always made me sick and if I remember right that was one of the Great Mysteries when I was gluten-free before. Then they came out with the "contains meat and wheat" thing and I was like, "duuhhhhhh".
To me, anything with WHEAT on the label is an absolute no no... but it sounds like people here eat them all the time and *don't* get sick. Anyone know why that is?
BTW we ate Hardee's last night and I feel fine (low carb burger and fries) but I really do wonder at the safety of the fries due to the CC issue. I'll have a talk with the manager next time I go in, just to see what she says about it.
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So, is Wendy's about the only celiac friendly fast food?
Hardee's low carb burger (lettuce wrap) is gluten-free, as are their "natural" fries ... can't vouch for cross-contam issues tho. That's probably dependent on the local store more than anything.
Open Original Shared Link
Sonic has some great options too - Open Original Shared Link
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Karen, I can't really help on the gluten-free shampoo tho I know some people use plain castille soap (you can buy @ health food stores). It doesn't really lather, but bubbles really don't clean. They're just for show. It's a good "basic" shampoo.
But I wonder - have you had your thyroid checked? My hair falls out in clumps when my thyroid is really, really off.
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PS, usually I'm good at figuring out the abbreviations, but you stumped me on the AFAIK??
AFAIK = As far as I know
What I don't know about is the grilled chicken at Wendy's. I know that in several restaurants lately I've either inquired about or researched beforehand and realized that the grilled chicken is marinated or injected with gluten-containing broth (like McD's, and McAlisters.)
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OH!
Now that makes sense. Thank you!
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I'd previously been gluten-free for several years until the GI doc told me I absolutely, positively, was NOT celiac. So I went back to eating gluten and (some quickly and some over time) my overt symptoms went completely away... especially the odd feeling I always got in my mouth after eating gluten (it felt like my mouth was burned by hot hot coffee).
However I did have occasional tummy trouble and fatty poops, alternating d/c (but not BAD), HUGE weight gain, and my hormones are out of control. The docs I've seen in the interim dismissed it all as "normal" or me being flighty or an assortment of other illnesses (none of which bore out, in spite of tens of thousands of dollars in testing)
So - due to research related to the thyroid and female hormone issues, I decided about 10 or 12 days ago to go gluten-free again, "just to see".
My body's response was pretty incredible - I've lost nearly 13lbs and feel felt great. It was like someone flipped a switch, the difference is that dramatic. The skin rash on my chest is was almost gone, my foot is clearing up, and so are my fingers now (none of which actually looks like pics of DH, so I'm not sure).
BUT - a couple days ago, not thinking, I tossed the hambone (left over in the freezer from my pre-gluten-free days) into a pot of beans. I knew immediately after eating that I'd made a mistake... my mouth felt burned! The next morning my belly was huge and rumbly, and I've spent the last couple days with outrageous and painful diarrhea. In fact yesterday I travelled with a friend on business and had to keep close tabs on the nearest bathroom. And the rash on my chest is back!
Needless to say I'm tightening up on my diet and carefully sorting through my frozen meat to be sure I don't get glutened again!
So here's my question - how could I go for several years, eating gluten every day, and not be overtly affected... then stop eating it entirely and WHAM my "glutened" symptoms are so incredibly severe?
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AFAIK Wendy's "burgers" are gluten free (I put "burgers" in quotes because anything thinner than your average piece of paper is pretty questionable in my book
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BUT -- their fries are listed as gluten-free. They are fried in a "dedicated fryer". HOWEVER their fries do not remain gluten-free.
In every Wendy's I've ever been in, the chicken fryer is to left side and the FF fryer to the right; and the rack where they dump the food out is to the right of that. So they pull the fry baskets out of the chicken, cross over the FF fryer, and to the place where the chicken is removed from the basket. Cross contamination.
Wendy's was wholly unconcerned when I called to complain and refused to post a warning.
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In a word, yes.
For the same reason you could be allergic to, say, milk and peanuts, you could be allergic to gluten and tapioca.
I have huge problems with millet - if I eat it, it feels like I swallowed a tasmanian devil and it's trying to chew its way out.
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Does anyone know what Ice Cream is truly gluten free and egg free?
I haven't contacted the company to be SURE, but the Aldi's vanilla ice cream in the freezer lists no gluten ingredients and no eggs.
There is a wonderful product available in most larger grocery stores called Tofutti (pints) ... it's gluten-free EF and also CF (casein/dairy) free... it really really rocks. I've served it to guests who raved about it.
(note that things like ice cream sandwiches likely DO have gluten, tho)
Had Stressful Evening
in Coping with Celiac Disease
Posted
A few years ago, I was facing a very frightening diagnosis. In the end, it turned out that I didn't have the disease after all - but when the doctor raised the possibility I quite frankly freaked out and stayed that way for weeks. Barely could function.
He referred me to a therapist who specializes in helping people cope with medical difficulties - cancer, diabetes, mental illness in themselves or a family member, severe allergies, that sort of thing.
I only met with her twice, but it was extremely helpful - and I was able to put her concrete suggestions about coping with overwhelming emotion to work in other parts of my life!
It was just non-threatening talk with some venting on my part, some good listening and acknowledgment on hers, and some encouragement and ideas for how to cope.
Jason, maybe if you have a heart to heart with your doctor about this, s/he could refer you to a counselor like that?