I’m all for alternative medicine. Heck…when I was younger, I dealt with random warts popping up on my knees, my hands, etc. Ahhh…the memories. Good times indeed. Anyway, after going to numerous doctors and trying every potion under the sun with no results, you know what actually worked? Castor oil and baking soda. Seriously.
So believe me…I am all for less doctor visits and less money in the pharmaceutical pockets whenever possible.
Well, they are testing a new treatment for celiac disease in Australia. It involves (if you’ve just eaten, you may not want to read this next sentence) injecting hookworm larvae into a celiac’s body. The larvae are put under a bandage and they dig their way into the patient’s skin and make their way to the intestines.
Just to be clear, the overall goal is not to put hookworms in all celiacs for treatment. It’s to see if the hookworm secretes anti-inflammatory proteins, and if so, put that into a pill.
Which of course brings us back to a pill to treat celiac. When we already have a treatment that has zero side effects.
We’ve discussed this before. I understand that some celiacs are craving a pill that would help with cross-contamination. I get it. I really do. I wouldn’t take it. But I get it.
But here is what one guy who took part in the hookworm pilot study did:
“I actually went out and I went to town and I had pizza and ice-cream, and salad sandwiches and Subway, just all the things I’ve missed for the last 15 years. And I was absolutely fine, I was terrific.”
A celiac “going to town” on gluten.
No thanks.
For now…I think I’ll just stick with the worm dance instead.
No thanks! Check out the book “Parasite Rex”. Very interesting about the life history, history of research on, and ecological importance of parasites. One of the things I thought was very interesting was the fact that as conditions improved for different ethnic groups (think back to the days of immigrants from Scotland, Ireland, etc.) and parasites were eradicated, the incidence of Crohn’s disease and other digestive disorders increased! Weird and cool. Definitely worth a read.
What a total stupid idea. And what a stupid lout to go out and actually eat gluten on purpose.
The big thing all these studies miss is that gluten works silently even in the “most sensitive” Celiac. Brittle bones don’t show up for decades. Anemia takes months to years to show up. Cancers are caused by the constant assault on the immune system weakening it to the break down point. These are small changes in the intestines that likely don’t even show up on gross medical testing. And small changes in the body that go on for a long time before anyone notices.
Then there are things that doctors simply don’t understand. Why did gluten cause the damage to my stomach that makes it impossible to digest anything raw now, 20 years after diagnosis? They don’t know. Why did the ulcers (from NSAIDs while docs told me “its all in your head”) never heal? They don’t know. I was left again to figure out what I can and can not eat all on my own.
Soooooo, am I the least bit impressed that one fine guinea pig went out and pigged out on gluten and believes that he is “fine”. NO WAY!
Am I the least bit impressed that “doctors found something that ‘reduces inflammation’”? AGAIN, not one tiny bit.
How many other auto immune diseases have miracle cures?
It seems to me that “doctors and researchers” might want to stop this focus on “cures” that require expensive treatments.
Sorry Cheryl. You and I will be disagreeing on this one. While I would never allow myself to have a hookworm placed into my intestines I would gladly reap the benefits of the research.
I am a rare case in this discussion in that my only symptom was some minor skin irritation. I was only tested and diagnosed at the age of 41 due to a familial concern. The 6 months I have been off gluten have been the worst of my life. I was finally at a place financially and with the age of my children that I could start to travel and see more of the world then the podunk towns I have called home my entire life. Celiac changed all that for me.
Not knowing what labeling requirements are in other countries and not being familiar with food prep standards scares the hell out of me and leads me to conclude that I am just better off sitting at home, gnawing on my kale leaf. Besides, who goes to Italy and only eats Kind bars while they are there? Nobody.
Long story, short; if this research leads to a cure, or even a workaround that gives me my life back, the life I worked hard for for a very long time, I am all for it.
You have been gluten free for 6 months. Your body is still healing from being constantly poisoned by gluten. Depression and anger are a part of this.
You are still grieving the changes to your life. Anger, depression, isolating, bargaining are all part of this process.
It is totally possible to travel and actually live life once you adjust.
It is interesting that you mention Italy. That is one of the BEST countries to visit. They treat gluten free foods like medicine. One needs only mention the need for gluten free and they will WITHOUT BEING ASKED remove their gloves, wash their hands, move to a totally GF station and prepare foods that never touch a speck of gluten! It is one of the best countries to visit. When we are steeped in grieving, it is very difficult to see that things will improve.
Perhaps it would be wise to google the stages of grief. It will help you to understand that some of this angst will pass and you will eventually adjust.
it is possible to have a full life. You just have to make adjustments to what you eat. That will come in time. Work thru the stages of grief and things will get better.
Cheryl,
You are spot on. I am absolutely still in the stages of grief but for me this runs deeper.
Only six months into this and my least favorites word are “It’s pretty good” or it’s twin “It’s not bad”. I don’t want food that is “pretty good”. I want to eat food that is fantastic, spectacular, life altering (that one might be a bit of a stretch)… . I cannot imagine traveling to Italy and only eating GF pasta. GF pasta sucks. There are no two ways about it. Given the choice between GF and non-GF in a blind taste test no one is picking the GF pasta. I also want my alfredo to be authentic and rich and creamy. Without the use of wheat flour you just cannot get the subtle textures that exist in a real alfredo.
I want to travel to NYC and eat a Nathan’s hot dog. I want to travel to Chicago and have a real deep dish pizza. For me travel is as much about taste as it is about sights and sounds and I am not packing all my food beforehand so that I can eat *fill in the blank with some not as good substitute meal) while those around me enjoy the taste of a city.
For those reasons I will gladly embrace a “cure” or a work-around if it lets me enjoy life.
You need to stop thinking you can’t enjoy life because you’re celiac. It’s a no-win path. Yeah…it can suck and I’ve spoken of the stages of grief too. But the sooner you resolve yourself, the better. And there are TONS of great natural gfree foods out there and some good not so natural foods as well. You’ll get there.
I have serious doubts about that. I am that guy that everyone hates because I was able to eat anything I wanted and I never really gained weight. I would literally kill some one for a Peppermint Oreo or a Caramel Sea Salt Zinger right now.
If I am offered one more salad someone is getting a radicchio enema.
I’m with CarrotMan 100%. 18 months or so in and this 42 year old would consider giving his left hand for a pint of Guinness. I’m Australian and have offered to be a part of the hookworm trial.
Hi Cheryl,
I thought that traveling was out for me too but had great luck with some diligent preplanning in England. I ate out at nicer restaurants for two weeks last spring (after talking to chefs and management weeks prior to travel) and did not get exposed! Some other countries, particularly in the UK and Europe “get it”. They are way more clued in than here. You can look up labeling laws for any country you are visiting. And my new stress-free way to travel and always have good back up food (not just Kind bars) is to cook and dehydrate meals. I would recommend “Another Fork in the Road” to get you started. All the recipes are made whole foods (if I recall correctly) and are quite tasty. You can also experiment with your own recipes. Stews and soups are especially easy – just reduce the liquid by cooking it off so you don’t lose flavor and dehydrate. Rehydration only takes a little hot water and few minutes. You can also steam and dehydrate frozen veggies. Add some GF crackers and some fresh greens, etc. and you have a delicious meal that you don’t have to worry about. I did all of this for a two week backpacking/camping trip and my companion commented every meal how tasty the food was. Nesco has a good dehydrator with 5 trays for under $50. You can dehydrate about 3 cups of stew, etc. per tray. This is my new go-to method for traveling anywhere, even to visit family. One of my favorite meals we came up with on the trip was edamame fettuccine with rehydrated portobello jerky, dehydrated herbed tomatoes, and other veggies topped off with some dehydrated garlic and olive oil. It was absolutely delicious! Good luck! Don’t give up on travel!
What a great share
” …. we already have a treatment that has zero side effects.”
Unless I’m misinterpreting, your argument against research into this seems predicated on this statement.
Yet there are ‘side effects’ – we know the average GFD is nutritionally poorer than the average gluten containing diet – so those with CD are at increased risk of eg folate deficiency relative to non-celiacs – and the microbiome of those with CD is less diverse, which (we’re learning) can impact health negatively. There are others.
We have a treatment, but it is imperfect: there’s research that the villi of some celiacs don’t recover well, for example. And what about those with non-responsive / refractory CD? The GFD isn’t enough.
Helminthic therapy is not for everyone, of course, but it’ll (hopefully) be an option for those who need it or want it.
Yes! I don’t necessarily want hookworms but if this study leads to an actual treatment for refractory celiac or something to help newly diagnosed people overcome the cycle of inflammation I’m all for it.
Thank you. I still can’t eat even if I have been on the diet for years now. I still get sick so yeah I would take a med and I still will eat gluten free as well. I can’t eat nothing now but for 4 foods so yeah Refractory Celiac is it.
Tired of being sick.
Barb
I always appreciate your input Alex…thanks. When I say “side effects”, I’m referring to potential side effects of a pill. And speaking for myself, I eat much better/cleaner/healthier now than I ever have.
I am all for medical advancements and I am all for science.
My fear, as it always has been, that a pill will be a license for celiacs to cheat, making it more difficult for the community at large to be taken seriously.
The impact on the perception and treatment of celiacs should a non-dietary treatment be introduced is a valid consideration, and I don’t even have so much as a hunch as to which way it might go. It may depend on the type of treatment, and the type of celiacs who undergo it (dare I say also on how it is received and advocated – or not?). Agree that any treatment will have to be carefully handled – so that those taking the treatment don’t use it inappropriately, or consider it a cure if it’s not a cure.
” a pill will be a license for celiacs to cheat”
That is starting to sound pretty judgemental. “Cheat?” When “cheat” means maybe being able to eat like other people, it sounds pretty good to me. Not everyone can make their own food and in general eat “healthy” when GF. And, the concern about travel is very real. I used to travel the world, but now, it would be difficult at best.
I doubt that this particular approach will be a “cure” anyway. An anti-inflammatory would have to be awfully specific to rate as a “cure.” After all, there are already lots of anti-inflammatories around, and few would want to take them all the time.
How do “we know the average GFD is nutritionally poorer than the average gluten containing diet”? I am genuinely curious– I have not heard that asserted before.
My wife has celiac and we have a gluten free house. We cook all the time and have a much more nutritious diet than most people, partly *because* we don’t consume much pasta, bread, cookies, and cakes day to day. I am curious about the assertion that eliminating a single ingredient would affect the overall nutrition of a person’s diet.
As for the hookworm study or other approaches to “curing” celiac, I find them all interesting and my wife may be interested if a study shows a “treatment” to be safe. But like Mr. Dude, I feel like we’re doing fine by doing without. And doing without doesn’t hinder our nutrition.
Agreed…
Hi Jeff,
With apologies to GD, as I don’t like to redirect others’ readers to my own site, but I tackled this precise issue in a blog some months ago. It’s here: http://foodallergyandintolerance.blogspot.co.uk/2015/08/the-gluten-free-diet-for-better-or-for.html
AG.
Thank you Alex, that is interesting. I was not familiar with those studies. I find it hard to compare our diet to populations at large and find your comparison between an individual’s diet to voting problematic, but the studies do show that many people may rely too much on fortifications in flour.
This Australian hookworm study appears to be old news although the story seems to be slow in gaining the attention of media on this continent.
This is a Sep 2014 article from an Australian source.
http://www.abc.net.au/news/2014-09-25/hookworms-coeliac-disease-research/5768732
Also worth noting is the small sample size of patients. These other two articles from about the same time both note only twelve celiacs were recruited for the study, four of whom dropped out in the early stages, leaving a mere eight patients on whom to run trials. So there is a risk of reading too much into any benefits these patients might experience from these hookworm experiments.
http://www.medicaldaily.com/hookworms-may-reduce-celiac-disease-patients-gluten-intolerance-symptoms-305236
http://medicalxpress.com/news/2014-09-spaghetti-celiac-patients-worms.html
The latter article echoes CR’s point, in the first comment above, regarding the relative lack of celiac, Crohn’s, etc in developing countries where hookworm infestation is common, whereas these afflictions are more prevalent in affluent nations where hookworms have largely been eradicated.
Following up on the sample size of the study I mentioned above, this recent article from just two days ago mentions hookworm trials to be undertaken on a larger group of 40 patients. It’s probably at this point that the North American media has now begun to pay more attention to this research initiative from Australia. It also contains the quote GD mentioned in his post about one of the eight patients from the previous phase of the study who proceeded to gorge on non-GF foods.
http://www.sciencealert.com/40-patients-are-about-to-be-infected-with-hookworms-to-treat-gluten-intolerance
Spot on John! Good to see someone else has been paying attention! 🙂
Thanks Mary but I must confess complete ignorance of these hookworm studies until I saw GD’s post this morning. Then I got to googling and found a few related stories that I thought were worth sharing on here.
I was diagnosed with coeliac disease 8 years ago at the age of 35 and by then had fairly significant villi damage. Since then I have been GF compliant to the best of my ability though have definitely had the odd contamination (i get mouth ulcers within a couple of hours of ingestion which can help track the source most of the time). So although I am careful with what I eat and how it is prepared and even what personal products I use, I still have frequent ‘glitches’ (digestive, musculoskeletal, neurological) that I wouldn’t wish on anyone – even when I have been eating 100% gf natural foods cooked at home. After extensive testing for other autoimmune disorders the only explanation (and sometimes there is just no explanation!!) is Coeliac Disease despite serology showing no active disease. My last biopsy about 4 years ago (and 4 years after going gf) showed significant improvement but still not normal so I likely have some element of refractory CD.
So would I try a treatment that might just give me longer periods of feeling well and who knows might even reduce my ‘glitches’ – heck yeah! Would I go and eat gluten foods – hell no! After 8 years of GF I don’t see the need or point in doing so.
As an interesting side note: as a child of the 70s I was wormed regularly by an over cautious mother who bought into the rampant pharma advertising that intestinal worms were the root of all evil. Not sure that means anything but I do know that genetic vulnerability + a long history of gluten ingestion + everything else that bombards a body system has at time left me feeling regularly unwell and glitchy (and much poorer thanks to the cost of medical bills $$$).
Despite all that I refuse to identify myself as a sick person – glitchy for sure but sick person no!
Have a good day 🙂
Forgot to add: I consult ed a very clever general physician through a four month bout of vertigo -the first few weeks of that was living hell.
He has a number of patients with CD and he describes us as quote “you funny coeliac people!”. Finally a doc that gets it 😉
Ciao
It sounds (is) gross, but there’s quite a bit of science to back up the worm thing – and not just regarding celiac disease, but autoimmunity in general. Anyone who’s interested in the science should check out this book: An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases by Moises Velasquez-Manoff
I’m not ready to go out and get infected with a tape worm, but this isn’t some fringe theory anymore, either. And I’d agree with those above who say that the GF diet isn’t perfect for everyone. Yes, there’s a ‘cure’ for celiac, but it’s difficult at best. I’m not sure why anyone would be against research toward additional therapies.
My doctor has told me about these studies, and others, that involve giving people with other kinds of autoimmune diseases, as well, worms. The theory, she explained, is to give the immune system something else to worry about by having it switch to trying to get rid of the worms. She was saying that researchers are now theorizing that we live too cleanly, and that we actually need these worms and parasites inside of us in order to be healthy. I have seen the damage these worms and parasites can do to animals … people are animals … no thank you with the whole worm thing. My issue with the attitude that “all you have to do to beat Celiac is eat gluten free” is that it is just plain wrong! We can TRY to be 100% gluten free, but in this world, that is just about impossible without living as a hermit and eating nothing but what you grow or raise yourself … no medications, either. Anything that is prepared at the hands of another could be contaminated. The world thinks it is easy to have Celiac because so many Celiacs think it is easy to be gluten free. It isn’t. And that is why so many of us still suffer with health issues. So … all that being said, I would gladly take a pill that was gluten free (but not the worm) and would help me to not suffer the consequences of cross contamination, but I would never go back to eating gluten on purpose. WAY too much damage done to this old body after 45 years living undiagnosed and sick to risk purposely eating it.
I got my 25 hookworm larvae in late July 2018. I finally got the nerve to test gluten 4.5 months later. It’s now 6 months later and I’ve gained 20 lbs from all the gluten goodness I’ve been eating. No downsides, just freedom from Celiac Disease.