So my doctor’s assistant called me yesterday with the results of my endoscopy and the associated biopsy.
She said I am not showing any signs of “celiac sprue”, as she called it. Stomach looks good. Villi are just fine…thank you for asking.
For a second there, I thought I was cured.
Holy sh*t…no more celiac disease!
Immediately, I started making my plans for the next day:
Domino’s for breakfast with Miley Cyrus.
PF Changs for lunch with Kim Kardashian.
Chevy’s Tex Mex for dinner with Dean McDermott.
This is gonna be best day EVER.
Gluten and cross-contamination be damned.
But then I awoke from my temporary state of insanity and remembered that, damn, there is no cure for celiac disease.
And all the tests proved is that I have not been getting glutened.
Which means I learned nothing.
And I know nothing.
So more tests.
And more waiting.
I think I like insanity better.
Ah, dude sorry no answers yet but I hope they come soon! At least you can take the tests and hopefully figure it out. Yes, insanity of not knowing and waiting for tests is much better than living in a delusion.
Although living in delusion is a nice escape once in awhile 🙂
It’s so comforting knowing I’m not alone! I had a slight mental breakdown over all the foods I miss – it was a VERY long list what with needing to be wheat, gluten and dairy free! But then I remember how horrendous they make me feel and it’s the slap back in to reality I need!! But why did you say Dominos…?! * weeps*
If you only had a “slight” mental breakdown, consider yourself lucky 😉
Don’t you hate answers that bring more questions? me too :(.
Let’s look at the GREAT news. Your villi are intact!! Yaaay!!
Refractory sprue is NOT a good thing.
Whatever else is going on still needs to be figured out, and that is frustrating and requires patience (I know, I’ve got a doctorate in frustration and patience 🙂 ) but keep the faith, Dude.
I hold all good thoughts for you.
And it may help you to know that a lot of people care about you.
IH
I agree Irish. I was happy about those results. There is another test result that I should hear about today or tomorrow. I am actually hoping this one comes back positive; it would kinda suck but it “should” be treatable.
Your sentiments are very much appreciated!
I am so jealous! You have healed! I had my follow up endoscopy 2 1/2 years after my initial diagnosis and I still show the same damage!! What am I doing wrong???? My doctor says some people take longer then others to heal but I feel that I just wasted over 2 years of my life eating so restricted. If I’m not healing what I doing this all for anyway??? And my bigger concern is if I’m not healing then does that mean all the terrible statistics that apply to undiagnosed celiac disease still apply to me since I’m not healing? So discouraged.
Don’t let that get you down – from what you say it has not gotten worse, so that’s a positive thing. Only suggestion I have really is to maybe look at the processed foods you are eating, and try to replace them with simpler foods made from scratch – depending on what “store bought” foods you are eating, the chemicals and preservatives might not be doing you any favours either.
If you are feeling better overall (even if it is not 100%) it is so worth it!
Sorry to hear Sharon. Try not to consider it as wasting two years. It could have been much worse if you hadn’t been off gluten.
I agree with Joanna. Simplify your diet as much as possible until you get some healing.
Hang in there…
You have not wasted 2 years, hon. You have spent 2 years healing! You’re just not “there” yet.
Do not be discouraged, just stay the course.
This is a recovery process. It may take people more than 2 years. I am sure I will. Unless you’re a child, it is not a quick recovery.
Check to be sure you’re not getting CC’ed somehow.
Also OTHER things can contribute to villous atrophy, including Bovine Beta Casein Enteropathy. It acts like celiac disease, causing inflammation leading to villous blunting. The milk protein elicits the antibody reaction just like gluten does in celiac disease.
But you have learned something here! This has confirmed that you are doing a lot of things right, so at least it is positive reinforcement in that area.
You have the gluten thing down pat, so now onwards and upwards. Can I ever understand how your frustration is just taking it all out of you here – fix one thing and another breaks so to speak.
Fingers crossed and hoping for the best for you here 🙂 And I believe that I have a lot of company!
Agreed Joanna. Would have totally bummed if they said I was still getting gluten in my system somehow.
Thank you!!
A post that made me laugh out loud and cry at the same time!
Hang in there Dude. We are in this together (except early this morning when you couldn’t have coffee….).
…and you brought your coffee to the CAT scan 🙂
Don’t we all wish that it was that easy!!!!!! My GP actually told me that I did NOT have CD because my blood work came back clean. I went back to my Gastro doc and said “WOO HOO!!!! No more Celiac!!!!!” He said, “No Donna, that just means that you are following the gf diet and you are dong a really good job at it!” He said, “I WILL follow up with a letter to your GP so that he is AWARE that you DO have CD!!!!” My heart dropped!!!!! But…at least I’m doing a half way decent job with the “diet”.
I sure hope you find out what’s going on though! It SUCKS to be sick!!!!! Especially with CD because you could develop an /allergy/sensitivity ir an intolerance to ANY other food and not realize it without eliminating it from your diet and then adding things one at a time!!!
Good luck, Donna
Thanks Donna. From all the comments on various posts, I would say most GP’s simply don’t understand celiac disease.
I had the same result from my new G.I. (when he insisted that I have a second endoscopy so he could see for himself) when I moved from Boston back to California. He called and said there was NO evidence of Celiac and was I “sure” that my doctor in Boston had said that’s what I had. WHAT!?!? I had been on the gluten-free diet for over a year at the time – and my thoughts immediately went to…. 1) “you’re telling me I went through two endoscopies (horrible experiences for me)…. for nothing??” and 2) “you mean I COULD have eaten all those wonderful foods in the past year that I passed up ‘thinking’ I had Celiac??” I couldn’t believe what I was hearing. So… I had to jump through a million hoops in order to have my old G.I. fax me the results from the first biopsy….. “total villous atrophy” I believe it said. The new G.I. was stumped, but basically said, “Well, I guess that means you have been doing a great job with your gluten-free diet.” Although, I know i have Celiac – and ALWAYS will…… his doubt always left me with about 5% doubt of my own. What if the results were switched somehow? What if… what if.. what if…. but, my symptoms of glutenings usually tell me otherwise. Although, it still didn’t make sense to me why I didn’t necessarily feel 100% better (but he had no answers for that either.) Anyway, bottom line……be thankful in the fact that you have now conquered the gluten-free world and your intestines have healed. That is something to be joyful about in and of itself. Great job, Gluten Dude! 🙂
I once saw an ignorant GI in my town who said I have “mild Celiac Disease.” WTF? Like being mildly pregnant. Turns out, mine was quite severe when diagnosed! Some GIs are so ignorant it’s unbelievable.
Crazy story about your docs…but not surprising.
They don’t put you under for your endoscopy?? I guess I’m lucky because I am out cold. Yet they keep me awake for my cystoscopy…go figure.
Oh, they attempted to sedate me – but evidently they didn’t do a good job of it because I woke up in the middle with the scope down my throat feeling like someone was trying to strangle or suffocate me. They ended up giving me a high dose of Demerol (in addition to the sedation) to put me out and had to strap my hands down since I was attempting to fight the doc off in my groggy freaked out state. When I met with the doctor later (the same one who told me that I could probably eat a cracker or two – I would just need to find my tolerance level)….he said we would have to repeat the endoscopy a year later. I said, “Are you KIDDING me?? That was awful!!” and his response was… “Yeah – well, it wasn’t any fun for me either.” Gee, thanks doc. My second one – I nearly cried when they told me I would have to have another endoscopy. I went along with it, but I clearly laid out what had happened to me before. This time – a similar thing happened….but, since he was more aware – he was ready. Later, he told my husband that it took enough sedation for 2 football lineman to put me out. Even though I woke up again that time, it felt more like a bad dream – than a living nightmare. :-
Ok…that is just a horrible story. Each day of my blog gets me more discouraged about the medical community.
Well, that’s very good that you’re healing and don’t have refractory CD. But it sounds like your CD was very severe when you were first diagnosed so maybe you are still in the healing process? I guess the question is, are you feeling any better than before you were diagnosed?
I have had a similar story. For the first 1 1/2 years after being diagnosed, I was continuing to feel awful and all of my blood tests kept showing that my antibodies were highly elevated. Yet I was trying as hard as I could to avoid gluten. I ended up having a second endoscopy last November and fortunately they found that I was healing and making good progress. I was also beginning to feel better. I got my blood drawn last February and although the antibodies are still elevated, they are not as elevated as they were before. I think I must have also must have had pretty severe CD when diagnosed. I have no idea how long I’ve had CD: some of these problems I’ve had since a teenager, even a child. Others developed in the last few years.
Perhaps you still might have some other health problem that’s being overlooked? Regardless, I hope you find some answers soon.
Have you been secretly taking Dr. Wise’s Gluten Relief and not telling us, Gluten Dude? After all, it is a guaranteed cure!
Sssshhhh… 😉
I just thought I would share my story with y’all. The GI put me on a high fiber diet 2 weeks prior to my colonoscopy and endonoscopy. Of course I just got worse. When the results came in he said very coldly you have celiac gave me a paper n orders to come back in a month for blood work. That’s it no explanation, no how to handle celiac, nothing. When he got my blood work results he said I didn’t have celiac. I asked why my villi where so damaged then he said gluten sensitivity. I then asked if gluten sensitivity meant no gluten or if I could just follow a regular diet. He told me a regular diet, I believed him. I ate normal and the pains kept coming back and the vomit, well y’all know the drill. He did a million “necessary” tests on me n he still couldn’t give me an answer. My boyfriend said maybe it is celiac since I got a lot healthier on the diet he again said no gluten free diet just made me gain weight. I have a very good insurance(only pay 10%) but this man milked me. He took advantage of my situation and he seemed to care less of all the pain I was going through. Currently I have a new GI so I’m back on gluten free. It just makes me so mad how careless he was. God knows how much more I damaged my body thanks to him or how much healthier I would be today if my gf diet wouldn’t have been interrupted. Goes to show Dr.’s can’t always be trusted.
he sounds horrible! If I were you, I would file a complaint against this “doctor.” He needs to lose his job!
Mindy said:
“Goes to show Dr.’s can’t always be trusted”.
You’re preaching to the choir here!
But some docs ARE good and some know what needs to be done before and after DX..
IF YOU GUYS DO NOT HAVE A GOOD, CELIAC-SAVVY GI DOCTOR, CALL YOUR LOCAL CELIAC SUPPORT GROUP AND ASK THEM FOR A REFERRAL.
A GI WHO IS KNOWLEDGEABLE ABOUT CD IS OFTEN ON THEIR ADVISORY BOARD.
No need to be battling all this without assistance.
I just started reading your blog today. You are having the same problems as my husband. A little bit of background on us. We have been gluten free as a family for 7 years now. This includes me, my husband and my 2 sons who are now 19 and 23 years old. None of us have been diagonsed with celiac disease but we have very severe gluten intolerance and treat it as if we have celiac disease. My husband has not eaten out for 7 years for fear of being contaminated. (His biopsy came back negative for celiac disease but we think it may have been a false negative, which is very common. He feels so much better gluten free.) For the first 5 years or so he couldn’t even walk past a pizza place in the mall and smell the wheat pizza without feeling sick from the wheat in the air.
He has had trouble sleeping for many years now. He finally found a doctor who told him that having the right levels of vitamin B-12 and vitamin D is important to sleeping. Vitamin B-12 absorbtion is a big problem for people with celiac disease. He is an A blood type. We found out that as people age, A blood types don’t absorb B-12 very well even if they are not celiacs. His doctor recommended vitamin B-12 shots that we do at home once a week to get his levels of B-12 back up to normal. He has also been taking vitamin D.
Vitamin and nutrient absorbtion is definately a problem for people with compromised digestion including gluten intolarance and celiac disease. You may want to ask your doctor to check for nutrient deficiencies including iron, calcium, B-vitamins (especially B-12 and folic acid), carnitine, selenium, and fat-soluble vitamins A, D, E and K. These are the common deficiencies for people with celiac disease. A person’s body needs to have a balance of vitamins to produce hormones correctly. One hormone the body makes is the one that regulates sleep. If the body doesn’t have the right nutrients to make this hormone than you will have trouble sleeping.
I was just reading a brochure that sited that one study showed that celiac patients who had carefully followed a gluten-free diet for 10 years noted poor B-vitamin status in 50% of the subjects. This was from Hallert C. Evidence of poor vitamin status in coeliac patients on a gluten-free diet for 10 years. Aliment Pharmacol Ther. 2002 Jul; 16(7):1333-9.
I hope this helps you find some answers and you feel better soon.
Thanks for visiting Joanne and thanks for taking the time to comment.
I am getting “complete” lab work done tomorrow. I believe they are taking ALL of my blood.
My calcium level is actually pretty high which they are looking into.
They will surely check all vitamin levels…thanks.
Make sure they check your parathryoid GD
Hypercalcemia may explain your fatigue.
Irish…my calcium is high so I was actually hoping it was Parathyroidism, but my PTH levels came back normal.
From what I understand, those high cal levels should (notice I said should —because when it comes to celiac, nothing is ever “normal”, right? ) normalize on their own.
I’ll be interested to hear what the doc says about this.
Keep us posted?
I’ve heard mixed things about it…surprise, surprise.
I will indeed keep you posted.
oh, that Celiac!!…she is a devious B*tch.
GD,
I wanted to tell you–totally off topic—that because of reading your blog, I saw that Aloha Julie had no celiac buddies in Hawaii. Bummer. No one should do this alone, so I told her to call me if she wants (I’m in NY) and we “hooked up” LOL– and we talked for an a hour and a half yesterday. It was like we were old friends and most of her symptoms mirrored mine.
So, if you ever wonder if your blog does anything “good” for those in the celiac community? YES! YES! YES!!
You’re doing more good than you may ever realize, kiddo. 😉
You’re a saint Irish!!
oh sweetie, I can assure you, I am NO saint–just ask anyone who knows me ! LOL LOL
My daughter-in-law has been on a gluten-free diet for the past three weeks and is to reintroduce it later next week to see if she has a reaction. I have spent every waking moment thinking of what I would pick for my gluten-challenge if in her shoes. While so many women are fantasizing about the book “50 Shades of Grey”, I’m fantasizing about “50 Shades of Red Velvet Cake”.
You could always combine the two 😉
Now I’m getting a mental of licking the cake beaters.
That’s hilarious…. 😉
You know, I think we all fantasize about what we would eat – if we had one last chance. If we could have just one more gluten-filled meal again – what would it be?? So…. since my cousin is having a biopsy done for Celiac in a few weeks (and luckily she doesn’t experience any of the stomach issues related to Celiac) – I told her to go splurge in case the result is in fact positive. I told her to go crazy and eat everything she loves as if it’s the last time……because it may very well be!!
oooh, ask her to eat some baklava for me, please ? 🙂
That is the one thing I cried about. Yes, there is a way to make GF phyllo dough, but it takes 6 hours. I watched this baker do it on youtube!
Seriously, though…. 6 hours? To try and get GF flours to “behave” properly. My back hurt just watching him.
When I can get my strength back, I’m going to tackle that one.
Oooh, that’s a good one Irish – I will let her know. A co-worker of mine brought in homemade baklava that everyone was absolutely dying over. I was drooling just looking at it – AND, my hubby was the lucky one to bring home the leftovers… I have never seen him devour something so quickly.
I am half Armenian–baklava is ESSENTIAL. 🙂
I have a great cookbook for GF baked goods. It has a baklava recipe that doesn’t look like it takes 6 hours to make. I have not tried it but it sounds really good and not that hard to make. Everything I have tried in the cookbook is excellent. The author, Rebecca Reilly, was trained in Paris as a pastry chef. She is now gluten free as well as her 2 kids. The recipes are easy to do and taste great. It is called “Gluten-Free Baking”. It is my favorite cookbook!
This is the first I have heard of a baklava recipe that is less time-consuming–and believe me, I have SEARCHED and consulted chefs and bakers I know!–so THANK you so much!
I will look that up right now.
(a big cyber hug and kiss)
🙂
IH
Gluten Dude,
You have been in my thoughts & prayers. Hope you get some answers soon.
Thanks Phyllis!!!
Sorry to hear it Dude.. guess you are stuck with us!!
Dr’s are nuts. Mine told me I needed to donate blood a lot so I could get better newer blood. I almost fell over laughing. Not seeing him again.
It seems like celiacs just run into a lot of bumps and hiccups. Spend a ton of $$ on food, a ton of money on Dr’s…. and never get real answers and never feel absolutely great! Our great is the average persons “ahh, I’m okay”.
Well, I am off to the health food store… apparently my last blood tests show I have almost no D, no B, no………. crap. more $$.
Hang in there. I hope they find the root of the issue.
Ok…I think your doctor qualifies as the worst doctor ever. Egads!
Love this: “Our great is the average person’s okay.”
Maybe I should stop trying to find out what else is wrong with me and just accept that’s it’s just celiac.
I meet celiacs who feel GREAT.
But they are about 7-10 years past DX.
I aim for that 🙂
GD, I would not stop the testing just yet.
While many symptoms are celiac-related, it does not mean we can’t have OTHER things going on. Just piling them into “it is just the celiac” could be a mistake. Wouldn’t want anything overlooked, right?.
You are wise to follow through.
Hang in there.
I agree, Gluten Dude – I love this statement…. “Our great is the average person’s okay.” I feel like this is absolutely true.
I guess I am just confused as to whether or not we are truly supposed to feel 100% better once on the gluten-free diet…. or if being diagnosed with Celiac just means that we are always going to experience ongoing symptoms of the disease even after going gluten-free. Irish, you say you know people that feel absolutely amazing after 7-10 years (yay for them!!) – but, here I am 10 years post diagnosis and I still feel tired most of the day. I also have that brain fog that everyone keeps mentioning (that I never really tied together with Celiac until recently) – you know, those days where you know the word you want to say, but it just won’t come out? Nobody understands why every time they ask me how I’m doing – I say, “I’m tired.” My body wants 12 hours of sleep every night and if I don’t get it I feel extremely groggy in the morning (throughout my life people have complained about this and wonder ‘why on earth’ I need so much sleep). I am on a strict gluten-free diet – yet I still have the bloating, cramping, etc. Granted – it’s no where near as bad as it once was – but, it’s not perfect. I went through testing for years and years – trying to figure out what else might be wrong with me. They did find a thyroid issue. I was actually excited, I thought that was the answer to my problems, but it wasn’t. They thought I was depressed and put me on anti-depressants…. and that didn’t fix anything. They did many more tests on my abdomen as well – nothing (except – you must have “IBS”). They also thought possibly fibromyalgia – but nothing conclusive.
So…………. while I do strongly believe that everyone should follow through with testing just to make sure it might not be something else making you feel bad (and that means you, Gluten Dude!) – I am a believer that once a Celiac – always a Celiac (symptoms and all). Again, I DO feel better now that I’m gluten-free and it took me at least 2 years to start to feel better…. but, i personally believe that I will always have to deal with Celiac symptoms.
Am I the only one? Or is everyone else here feeling 100% better on a gluten-free diet? Hallelujah to those that do…. but, I am guessing I am not in the minority?!?
Actually, I said I have met celiacs who say they feel “great”.
They look great, too. Maybe “great” is a relative term. But they sure seem to be living normally and flourishing.
I hope to feel great someday too. I was the walking dead, so the way I feel today may not be 100%, but it beats the shit out of what it was.
I had to resolve many issues to get this far. And my hubs went GF too, (his decision) so our house is about as clean as it gets.
I am sorry you are still feeling so poorly after 10 years. That must be very frustrating for you and something is certainly keeping you from felling well.
Have you had your FOLATE levels checked? Folate deficiency can cause fatigue (and I mean, bone deep, dragging your ass tired) and a feeling of foggy head. Others are Vitamin D, and B-12. and ferritin storage levels. That Folate def made me feel like a total wash out.
Once supplemented, I saw a huge difference.
I suppose everyone had already offered these thoughts to you. Forgive me if you already know. Just trying to help.
Best wishes to you.
Kristin…your comment speaks for a lot of celiacs. Before starting my blog, I thought I was the only one who didn’t seem to be “healing”. But now it seems so widespread. Well…at least those on this community.
This will now be a post for another day…Is This as Good as it Gets?
You’re right, Irish – I suppose “great” is a relative and subjective term. From where we all started and finally leading up to our diagnosis – I suppose we all feel our own version of “great” comparatively.
My husband is also nearly 90% gluten-free with me…. so there is very little gluten in our home as well. I take a multi-vitamin everyday, but no I have not had my levels checked recently.
I wouldn’t say that I am feeling that poorly…. but I still have lingering symptoms. I have tried cutting out dairy – didn’t make a difference. Tried cutting out soda – didn’t make a difference.
I guess I am just wondering at what point do we say…as Gluten Dude put it – “Is This As Good As It Gets”?? For me, I think that the answer is “yes”. At some point, I had to just say – this is me….. this is my life.
Irish – I wanted to take a moment to say that I think you are helping so many on this blog and others. I found your “newbie” list on the Celiac.com forum site that I sent to two newbies hoping that your wisdom can help them get started. Thanks for what you do!! And… Gluten Dude – thanks for getting the word out as well. I have been passing along your blog posts to the “newbies” as well – and they appreciate coming here and realizing that others are going through the exact same thing that they are. (Especially the one that is more symptomatic than the other – she greatly appreciates coming here and seeing that others “understand”.)
So – thanks to both of you….. I have been laying in bed for the last several weeks reading up on all these wonderful Celiac blogs out there. I have to say I am so proud of the Celiac community!! 🙂
K,
No one gets it like another celiac!
Thank you.
I am so glad that anything I say helps someone.
After the ordeal I went through, I felt I had to do something
to make sense of it. To make something good out of something bad
and give back to the celiac community that helped ME figure out what was killing me. It was from reading posts on c.com that I had the light bulb moment.(which was not easy, given the state of my brain by then) There they were–People with the same bizarre and crippling life-long symptoms–and it all made sense. And I owe my cousin’s wife big-time because she kept asking me via email : “Are you SURE you don’t have a gluten problem?”
I live by the “Pay it forward” rule.We are all in this together.:)
I hope you continue to improve and I would suggest you look to what hidden gluten may be getting in you somehow–as that seems to be the culprit (from the many stories I hear) and have your levels checked (B-12, D, folate).
And for those of you with GEs for spouses, re:the gluten kiss thing?
Gives new meaning to the “the kiss of death” (my doc loved that one!) It’s for real–so your hubs has to brush vigorously and swish.
Gluten is alcohol soluble.
I was only half kidding on the “sex” blog when I said swish and spit with gin.:)
Wishing you well,
IH
My pleasure Kristin. You have no idea how glad I am that my blog is helping people.
see, I told ya, Dude!
😉
GD, I just got a chance to read all of these comments. It was great talking to Irish Heart, she is the first person I have spoken to that has celiac!
I don’t feel 100% either, I want to work out but I’m too tired. I’m able to go for walks now, before I was diagnosed I couldn’t b/c I did not know if I’d make it back to the bathroom.
I do feel allot better in so many ways, and am positive I will continue to get better, I do think that I can only have so much gluten free bread or pasta, one serving every day or two, more than that, I get exhausted.
Irish Heart said the same thing. I don’t know what is up with that.
Anyhoo, hope you have a good weekend.
p.s. I’ve just had a vodka, not sure I can add those numbers below.
🙂
Aloha, Julie!
I agree. TOO many carbs are hard for us to digest right now.
My doc says we should take it slow with vigorous exercise at first. Our muscles are deeply impacted and the body leeches nutrients and minerals from bone, muscle, anywhere it can– to get what it needs when there is malabsorption. (that’s why so people develop osteopenia/osteoporosis from CD)
Walk, swim, gently stretch (warm up first) and ice after.
Talk to you soon! 🙂
IH
whoops. sorry for the typo—that should read:
“so many people”
I heard you two connected…that’s awesome. I had some vodka last night. Adding 1 plus 1 would’ve been tough.
I don’t want to rain on the party but many people who have celiac disease or gluten intolerance can not tolerate alcohol that is made from gluten containing grains. Even though the alcohol manufacturer’s say it is not a problem it is for many of us. Most alcohols are made from gluten containing grains these days. Even ones like vodka that used to be made from potatoes aren’t anymore. Foods like vanilla extract contain alcohol made from grains. Hidden gluten is the enemy that is keeping us from getting 100% better!!
NOPE!!
sorry but I have to disagree.
This is simply not true. This is another “celiac myth”.
People may not tolerate alcohol for various reasons (like gut impairment) but it is not because of gluten grains.
I am a barometer for trace CC and I can tell you for sure there is no gluten in MCCormick;s vanilla extract. Or likely, any vanilla extract, for that matter.
The National Institutes of Health’s Celiac Disease Awareness Campaign makes a point of saying all distilled alcohol is gluten-free, regardless of its original source.
The Canadian Celiac Association concurs, saying in part, “distilled alcoholic beverages such as gin, vodka, scotch whisky and rye whiskey are made from the fermentation of wheat, barley or rye.
Since they are distilled, they do not contain PROLAMINS [i.e., gluten proteins] and are allowed unless otherwise contraindicated.”
(1) RE: vanilla extract.
vanilla beans extracted in distilled alcohol make pure vanilla extract.
In the United States, legal criteria must be met to be labeled “pure vanilla extract.” The FDA standard of identity includes vanilla bean extraction in a distilled alcohol. Distilled alcohol is gluten free, of course. The distillation process prevents protein from vaporizing into the final distillate. The only other permitted ingredients are: water, glycerin, propylene glycol, sugar, invert sugar, glucose, and corn syrup. The other ingredients can be added to enhance the perceived flavor qualities and to speed up the extraction process.
(2) Alcohol derived from wheat
There has been concern expressed at times about products made from grain alcohol, when the alcohol might be derived from wheat. Because the toxic peptides (in fact all peptides) have low volatility, whereas alcohol produced by grain fermentation has a high volatility, properly distilled alcohol derived from wheat grain will contain no toxic peptides.
Consequently, all vinegars made from a base of grain alcohol should be safe and this is true also for alcohol extracts as well, for example, alcoholic extracts of vanilla. In general, it appears that distilled liquors such as vodkas and whiskies should be safe, as well. Beer made from wheat, barley, or rye, as mentioned above, is a fermented, but not distilled, product and hence might have some toxic peptides in it.
Donald D. Kasarda, Ph.D.
Research Chemist (Retired)
U. S. Department of Agriculture
http://wheat.pw.usda.gov/ggpages/topics/Celiac.vs.grains.html
There are several vodkas made from potatoes on the market, if you are really worried, including:
Chopin Vodka – Potato – Poland –
Ultimat Vodka – Potato – Poland
Luksusowa Potato Vodka – Poland
I am married to a chemist and he assures me, I can drink alcohol.
I do sometimes, in small amounts, and I am fine.
I think I speak for all celiacs when I say “Phew!!”
LOL LOL
and I’ll drink to that, bro…..Slainte!….(pronounced “slawn cha” –that’s Gaelic meaning “good health”!)
Cheers!
just getting my day started and laughing out loud over here in Aloha land. I can handle the fact that I can’t go to a joint and have pizza and beer, but take away my vodka ? Thanks Irish Heart for clearing this up!
The song that comes to mind, “Don’t take away my heaven,” by Aaron Neville. (probably dating myself here), I think I can speak for all of us celiacs; we could think of several words to replace “heaven!”
ah, Aaaron Neville and the Neville Brothers.
Good stuff.
The new ruling that has taken place this past May has stated that alcohol can not be called gluten free if it comes from a source that wasn’t gluten free. I think that is a wonderful step forward for those of us with celiac disease and other gluten sensitive issues.
http://www.ttb.gov/rulings/2012-2.pdf
I can tolerate limited quanities of alcohol that are naturally gluten free, ie; wine, unflavored rums, and potato vodkas, etc.. However, if I have a vodka that is made from wheat or rye, my stomach has sharp stabbing pains for days. Some of us just can’t do distilled products that came from gluten.
Hello, So I am a nurse practitioner who works in GI and has celiac. Some information that may help you and your readers is to note that there is no known safe level of gluten for celiacs.
There was a big study that showed as low as 50 ppm caused a reaction in many of the participants… and that food in the USA only has to be tested to be below 20 ppm to generally have the gluten-free certification, which is different than foods that contain naturally gluten-free foods and use the slogan on the box (as most of us know there are no real specifications for these designations). Furthermore, many people that are consuming 20-50 ppm will have normal labs (ie. ttg, endomesium, etc.) … further more viili damage is generally not visible on gross EGD and biopsies are needed….. and then the next problem is the varying pathology labs and how good they are at identifying mild changes in villi….. so now hopefully you have a good picture of how hard it can be to tell what’s causing a patients problems and the importance of making sure you have a well educated provider. Also the importance of ruling out other auto-immune disorders since these are one of our biggest risks, besides cancers… and the longer a celiac patient goes untreated and /or uncontrolled the more likely this will occur.
Please let me know if there is anything else I can provide information on and I can post it here or on my website. Heather from http://www.myglutenfreestyle.com
I always thought it was crap that celiacs could still ingest some gluten at low levels.
You are correct…. We need to keep it away at all costs…. It turns into a toxin in our systems…. Interestingly the new research show as little as an 1/8 of a teaspoon can activated our immune systems….. And some are even more sensitive!
Isn’t it crazy that only 1/8 of a teaspoon can do that…. That’s a tiny amount!!!!!
Yes, that tiny amount would kick my butt.
Some celiacs can tolerate higher levels than others. I seem to react quickly to trace gluten. Others do not. Yet, I am okay with most
Certified G F products from dedicated facilities. I eat them sparingly.
The established < 20 ppm as a "safe amount" for celiacs is based on extensive research.
Heather mentions a study citing 50 ppm. I wonder who says that amount is safe for a celiac? Never heard that before.
Dr. Stefano Guandalini, Medical Director of the Celiac Disease Center at the University of Chicago, shared his perspective on the science behind the safety Assessment:
“In establishing a threshold of gluten to be used in defining “gluten-free foods”, it is evident that our aim should stay focused on identifying what is the highest amount of gluten that would be safe to assume daily for the “vast majority” of individuals with celiac disease.
The FDA had 2 routes to follow: either recommending a level based on the lowest amount of gluten considered toxic as reported from published studies and corrected by introducing the 10-fold “uncertainty factor” (the so-called “safety-based approach”); or determining this threshold based on the sensitivity of the best and most reliable testing methods available (the “analytical method” approach).
The agency chose to follow the latter method, and in my opinion, this was the right choice. In fact:
The data obtained for the Tolerable Daily Intake (TDI) using the “safety-based” approach show extremely low levels of gluten: this is the result of a rigorous calculations that has these characteristics: a) It takes into account the very few studies where adverse effects were seen at very low concentrations of gluten; and b) it further reduced that amount by a factor of 10 (or in some cases even 100, when only data on the lowest observed adverse effect levels were shown!).
Thus, the surprisingly low levels of 0.4 mg/day for “physiological” effects or the incredibly low amount of 0.015mg (15 microgram: an inconceivably minimal trace amount!) resulted as TDI. While this method is formally perfectly correct, its implications are untenable: no one in the celiac community would accept as “intolerable” intakes of gluten in the order of 15 micrograms!
The best methodological tool in clinical investigations is a double-blind, randomized trial. Regrettably, such trials to establish toxicity of gluten in vivo are extremely limited. I would offer that one of the methodologically best studies (noticeably, the only one performed as a randomized controlled study of a microgluten challenge in patients with celiac disease) is the one authored by Catassi et al. in 2007.
This study is very clear in indicating that the daily intake of 10 mg of gluten (i.e. an amount 667 times higher than the estimated TDI of 15 micrograms!) for 3 months (!) in known adult celiac patients did not cause any damage, while 50mg/d were in most cases harmful.
The gluten threshold identified by the Catassi’s microchallenge study is consistent with a series of studies that have been the object of several excellent reviews, concordant in indicating that a diet containing up to 10 mg of gluten per day is safe for celiac patients.
Accepting the analytical method, as well as the indications from the vast majority of studies available has the obvious advantage of allowing to rely on an internationally accepted and well validated method of quantification of the gluten content in foods at level down to 20ppm, and also of conforming the US standards to the European one. And won’t result in any harm to the exceedingly vast majority of celiac patients: in fact, to reach levels of gluten intake above 10mg/day, ONE WOULD HAVE TO INGEST MORE THAN 1.1 POUNDS OF THAT PRODUCT PER DAY.
Finally, forcing the manufacturers to produce GF foods with unthinkably low level of gluten would evidently result in a dramatic reduction – and perhaps even a disappearance – of available GF products. In this scenario, everyone can see how celiac individuals would have a much harder time in remaining compliant to the diet.”
The "vast majority" of celiacs do well with this low level of gluten.Some do not. There is no such thing as" zero gluten"; it's impossible.
So, we might as well just accept that fact as life on this planet. The planet is a "shared facility". People need to figure out their comfort zones.
I would hope no one is ingesting more than 1.1 POUNDS of gluten free items per day. Yikes.
I went to a Celiac Specialist last week. They were shocked the idiot doctor I saw nine months ago while hospitalized for malnutrition, weight loss and not eating, didn’t obtain a Celiac biopsy while doing the END. He only tested for H. Plyori. Therefore, they won’t repeat the END this soon b/c my stomach AND liver are still too jacked up and they don’t want to do anything invasive at this time. I have to wait at least six months for another END. In the meantime, they said my tenative diagnosis is Celiac regardless of test results:-)
Why does the word “idiot” go with the word “doctor” so often? Sad.
I had my blood test done today and next Friday Im having the biopsy and colonoscopy done. Anxious for the results! Have you guys done any research on phytic acid? Seeds and nuts cotain high levels and have the same destructive proprties as gluten, so also brown rice etc. google it, so damn interesting. There is one book on it on amazon kindle and cost nearly $300!! Luckily there is a lot of info available. Also, many eat soy products when the stop gluten, that is another poison!! Soy completely destroyd my thyroid. What is left to eat? Im sure all of you have read Wheat Belly by now, if not, download it to your kindle NOW! Best read ever. Love you guys, there is madness behind this method.