Gluten Free Sometimes Just Isn't Good Enough....

[strezzedout1979]

Hi Everyone,

Just wanted to share a little of my experiences as of late. I have been on a strict Gluten free diet for almost 3 years now. I am talking meat and veggies and fruit. Nothing processed ever!! I have been in so much pain lately I had a Colonoscopy, Ct scans, EGD, Capsule Endoscopy, Ultra Sounds, Blood Work and Stool samples. My Ttg still 7 times the norm. Ok so I know I have Celiac disease... I accepted that. But did you know that there is such a thing as Refratory Celiac Disease? Well leave it to me to have it. It doesn't matter if you stick to Gluten free or not your body is not healed by going Gluten Free!!! Crazy right?!? So now I have to go to a Celiac clinic so they can decide if this is type 1 or type 2. So steriods or Chemo?? Really?? All I could think was "WOW" when I got the call. I was under the impression when I was diagnosed the first time, stay away from what makes you sick and you get better. You know "if it hurts when you do this, don't do it" But I can just go with it for now, I see a surgeon on the 19th to do a diagnostic Laproscopy for more biopsies and then the Clinic for more pokes and prods... So for any one out there who is truely Gluten free.. I mean checking your deodorant, shampoo everything and you still are not feeling better, have your doc check to see if you have refractory Celiac. Have a great Day

[kareng]

Unfortunately, that is every Celiac's nightmare! Well...that and the one about the loaf of Wonderbread chasing you down the street.

Hope you have some good docs who know what they are doing. Keep us posted on what you find out. This is rare so you could help educate someone with your experiences

[T.H.]

Okay....loooong post. Apologies, but I pass this along because there is the possibility that it might be relevant for you, and might be able to help.

Okay, first:

In a recent study trying to determine how much gluten a celiac could eat and still heal, it was determined that just under 50mg of gluten a day was safe. In that study, however, they had one participant drop out of the study early, so his results couldn't be added in. On only 10mg of gluten a day, this man (who had been healed) had a complete relapse. He was vomiting every day, diarrhea, the works.

So while most celiacs were fine with what amounts to, essentially, eating a day's worth of food that is <20ppm of gluten (the gluten free standard in most places), that's nearly 5 times what this one man could eat safely.

In a concrete example, if this man had a can of gluten-free soup and 4 slices of gluten-free bread during the day, and ate nothing else whatsoever, that's already enough gluten to make him sick.

However...he had been healed by the time he joined the test. I'm assuming that he ended up doing what I have had to do, because best me and the doctors can tell, I'm in that category too.

Now, I know I mentioned processed food in the above example, and you're not eating processed food. I've found out, to my frustration, that eating non-processed food doesn't always keep out the gluten, if you are sensitive enough. There's actually a super-sensitive celiacs section further down on this forum with others who have run into this. Most of us don't heal until we go much further than most to avoid gluten cc from some crazy sources.

Before I figured this out, I wasn't healing either, even when I wasn't eating much processed food at all (I had oil, salt, a couple whole grains, but otherwise meat and veggies). I was really worried I was going to get the 'refractory' label, too.

Here's some examples of where gluten has zapped me, or other sensitive folks I've met:

- salt, from soap used to clean the equipment that had gluten derivatives, or from the corn derivative used to stabilize the iodine in any iodized salt

- oils, from contaminated lines (I used to use spectrum oils, and they process wheat germ oil on the same line as the other oils)

- nuts and beans, from facilities that processed wheat. If you are in the USA, they do NOT need to add that 'also processed in a facility that processes wheat' label. It's voluntary. I've been so sick off of plain nuts and beans, it's annoying beyond belief.

- ground meat - often shares grinders with sausage that has wheat in it.

- whole meat from the butcher - often prepared at the same time as the meats that have wheat coatings added, or in the same areas, or near enough for flour to float over and gluten cc it.

- poultry - often gets minute traces of gluten during the defeathering process.

- strawberries and mushrooms - often covered with straw, which is very often oat or wheat straw

- fruits and veggies - touched at the store by hands covered in gluten, and too many crevices to wash off even with soap and water.

- gluten-free grains - shared harvesters, shipping trucks, fields, mills - it's so hard to find any grains that don't have a little cc that it's crazy.

- veggies that had compost or mulch used that had straw added from gluten grains.

- gluten-free oats - I also turned out to be oat sensitive, best we can tell (seriously, I haven't even tried oats themselves, because the reaction is so bad), and that's very hard to avoid with gluten-free grains, if they are purchased from certain sources.

- work near construction or baking, as both involve dust in the air that often has enough gluten to be inhaled and digested a little.

I just want to mention this because most doctors don't really ask you to eliminate even more gluten, because they aren't knowledgeable about our food supply and just how prevalent gluten is. And there's a slight chance that it could be an issue for you. Not certain, obviously, but a chance, anyway. But if you want to try to get super gluten free before your doctor's appointment, it certainly couldn't hurt, yeah? I imagine there could be lots of advice in the sensitive section, with how many of us have been in a similar place. :-)

[GFinDC]

It seems more likely they would want to put you on immuno-suppressant drugs than chemo.

Have you got a gluten free home environment? You might be getting cc from gluten eaters in the house if you don't. And then there is the gluten kiss of a contaminated mouth to think about.

Vitamin pills and meds are sometimes a gluten problem also.

Have you tried an elimination diet?

[strezzedout1979]

Good thought.. I honestly think if I eliminate anything else from my diet I could very well starve. I wash everything, meats are all rinsed prior to cooking. fruits and veggies I use Fit to clean them. I cut out dairy rice and any legumes. My diet is pretty boring. I check everything, I read every label... my husband hates going food shopping with me because he says it's like going to barnes and noble and reading the back of every book lol. I just once would like to have a place that is truely a gluten free farm... no gluten on the property all animals fed non gluten feeds.... I think I might have to buy an island and start from scratch lol

[strezzedout1979]

It seems more likely they would want to put you on immuno-suppressant drugs than chemo.

Have you got a gluten free home environment? You might be getting cc from gluten eaters in the house if you don't. And then there is the gluten kiss of a contaminated mouth to think about.

Vitamin pills and meds are sometimes a gluten problem also.

Have you tried an elimination diet?

TYPE 1 refractory Celiac gets steriods or immuno suppresant drugs, Type 2 refractory Celiac disease is Chemo. Basically cancer at that point. I have a fully Gluten free home. I am pretty OCD about it at this point. I have been sick for too long to take a chance with any of it. I read every label before I take it, I always know what is going in my body and sadly it isn't very much these days. My diet is Aat the end of elimination, If I eliminate anything else I vary well will be on a water diet. My doc tried a liquid diet with me for 7 days I literally ate koolaide popsicles (home made) and water. none of the symptoms improved. I even tried restricted Vegan for a few months. I am to the point of a boringly consistent diet.

[bartfull]

I'm trying to figure out what besides gluten is bothering me. It seems corn is a big problem for me, but searching for answers on the internet, I found that some people have problems with sugar, some with iodized salt (because there is corn in it), and there are even some people who have problems with rice.

Can you grow a garden? Do you know anyone who raises their own meat? Sounds like a most inconvenient inconvenience, but it's cheaper than buying an island, and much better than chemo.

[T.H.]

Hmmmm...what kind of soap is Fit? Could it be part of the issue? (My soap has gotten me, too).

Do you have any farmer's markets where you are? With some major questioning, the 'no gluten on property' route is about what I've had to attempt. Haven't quite managed it, but we're close.

I get my produce from a farmer that goes to one of the farmer's markets in my town. He only has chickens, and the only feed he has for them is corn. He doesn't grow wheat, rye, or barley. He doesn't wash his produce with any soaps. He doesn't use any mulch or compost that uses glutened straw. He doesn't spray with pesticides or ripening agents or gases to prevent sprouting. He doesn't use slug bait. He doesn't use fish emulsion (who knew that was a gluten hazard, sigh). He doesn't put on waxes.

That's as close as I've been able to get.

And unfortunately there is a feed lot about 5-10 miles away from his farm, and sometimes they can smell the feed in the air, so I always wash my produce from them, just to be safe.

But with him, I've been able to expand from my previous two types of produce to nearly everything he sells, which is so amazing it just blows my mind some days.

I get my meat from a rancher with no antibiotics, no hormones, 100% grass fed beef, who cleans the meat with something I don't seem to react to and doesn't process wheat sausage in the same facility.

my husband hates going food shopping with me because he says it's like going to barnes and noble and reading the back of every book lol. I just once would like to have a place that is truely a gluten free farm...

I know exactly what you mean - your husband and mine could commiserate, LOL. I remember thinking just that thought about gluten and farms. Seriously, how hard is it to just not have gluten touch my food, darn it! ARgh. My best luck has been smaller farmers at farmer's markets. Usually the ones that are organic, but that are small enough that affording the certification for organic is beyond their means.

The big organic places end up using tons of stuff that makes me sick as a dog. But finding the small ones has been a real chore. Heh - your husband thinks reading the labels is bad? He should see my list of questions when I'm talking to a potential produce farmer, LOL. I think my husband was praying for an early death when he had to wait on me to ask 'em. ;-)

I just want to say, really quick, that I hope this doesn't feel like badgering. I really don't mean to be doing that, and if that's how this feels, I apologize. It's mostly that I was SO close to being in your position, and how I've avoided that honestly feels crazy. There is no way in a million years I could have imagined that I would have to go to such severe lengths to avoid gluten, or that without this, I'd never get well. It seems insane, because I would have sworn no gluten at all was sneaking into my food before then.

And obviously, I don't know what your body is going through, or why it's screwing you over this way. I suppose it's just that if there's even a chance it's similar to what I went through, I want to make sure you or anyone else has enough information that if you want, you can take that same chance to avoid it, too, if that makes sense?

Because when I was still sick and reacting, I was eating under 10 foods - usually only 5 - and still couldn't get completely well. I mean, I ate whole foods only (dropped the oil fairly quickly, added a new one in, and dropped it again), everything was organic. I lived in a completely gluten-free home, so no contamination. I had gluten free soaps and my husband even ate gluten free so I'd have gluten free lips I was kissing, LOL.

My doctor had no idea what was going on at all. My dietician was trying to help, but she had no clue either. Allergist was stumped, too.

Now, both my GI and my dietician use me as their test case, LOL. If I can eat it, they've never had a patient react. And I'm happy to say that after my experience, my doc has now been adding something new to how he treats his refractory celiacs: he now has them work with his nutritionist to see if they can eliminate even more gluten from their diet and see if it helps.

It's really comforting to know that at least all this crap I had to go through might help someone else, you know?

And truly, if you feel like there is the slightest chance that you might be super-sensitive and would like to try to see if there's a chance you can find some safe food, down at the super-sensitive section, we'd be happy to pass on questions we have to ask farmers, and whatever other odd tidbits have become parts of our daily lives to keep safe.

Otherwise, wishing you lots and lots of good luck. I really hope they find out what it is that's getting to you, so that you can start to feel better!

[organicmama]

Have you looked into Peaceful Pastures as far as meat supply? They are a grassfed organic practice farm (although not certified, so prices are great). Our co-op group has been ordering from Jenny (the farmer's wife) for years. She has two masters degrees and used to be a food inspector of some sort, so she's very, very knowledgeable. It's not like talking to any old farmer. She might be able to help or point you in the right direction.

[ravenwoodglass]

Good thought.. I honestly think if I eliminate anything else from my diet I could very well starve. I wash everything, meats are all rinsed prior to cooking. fruits and veggies I use Fit to clean them. I cut out dairy rice and any legumes. My diet is pretty boring. I check everything, I read every label... my husband hates going food shopping with me because he says it's like going to barnes and noble and reading the back of every book lol. I just once would like to have a place that is truely a gluten free farm... no gluten on the property all animals fed non gluten feeds.... I think I might have to buy an island and start from scratch lol

My first suggestion is going to be to drop the Fit for a couple of weeks and see if that makes a difference. Get a produce brush and just wash under running water. If your worried about pesticide residues just buy organic. My second suggestion is going to be to go with whole foods that are unprocessed for a month or two and see if that helps. At the least it will make hubby happy because there are no labels to read on fresh meats, fruits and veggies etc and on the frozen varieties you should only see, for example- peas.

[dilettantesteph]

I think that I would have been diagnosed with refractory celiac by now myself. I have to be ridiculously careful about what I eat. I have been glutened by seafood bought at the counter. Now I have them change gloves and get it directly from the shipping package. I have been glutened by meat cut up and packaged in the store. Now I only buy meat packaged at the meat distributor. I have been glutened by chicken. Now I get my chicken from one source which I have found to be safe. They are pasture raised and butchered in a separate facility from everything else. I got glutened by mushrooms and found that they were raised on a grain substrate.

I have been told that it couldn't be gluten and must be some other problem like another food intolerance, but invariably I manage to find a safe source of whatever that I can eat.

The only edible things that I can get in the store are bananas, organic carrots, Pocono's buckwheat groats, seafood and meat. I grow a lot of my own food and get the rest from farmer's markets from people who pass my questions. I have had problems with all sorts of produce which I have uncertainly traced to slug bait, using straw, pesticides, coatings, sprouting inhibitor, gluten containing fertilizer etc.

My GI thinks that refractory celiacs are celiacs sensitive to incredibly small amounts of gluten. This approach has worked for me. Keep a food diary of everything you eat and what it's source is. Also, how you feel. That will help you to figure out what you can eat. Sometimes I'll eat an extra large serving of something so that I can know for certain whether or not it is safe for me to eat. What has helped me enormously is that my two children are just as sensitive as I am so that we can compare notes. I am also able to compare notes with some other super sensitive celiacs which also helps.

It seems like a huge effort, and it is, but the payoff of good health is worth every speck of it.

[Gemini]

Hi Everyone,

Just wanted to share a little of my experiences as of late. I have been on a strict Gluten free diet for almost 3 years now. I am talking meat and veggies and fruit. Nothing processed ever!! I have been in so much pain lately I had a Colonoscopy, Ct scans, EGD, Capsule Endoscopy, Ultra Sounds, Blood Work and Stool samples. My Ttg still 7 times the norm. Ok so I know I have Celiac disease... I accepted that. But did you know that there is such a thing as Refratory Celiac Disease? Well leave it to me to have it. It doesn't matter if you stick to Gluten free or not your body is not healed by going Gluten Free!!! Crazy right?!? So now I have to go to a Celiac clinic so they can decide if this is type 1 or type 2. So steriods or Chemo?? Really?? All I could think was "WOW" when I got the call. I was under the impression when I was diagnosed the first time, stay away from what makes you sick and you get better. You know "if it hurts when you do this, don't do it" But I can just go with it for now, I see a surgeon on the 19th to do a diagnostic Laproscopy for more biopsies and then the Clinic for more pokes and prods... So for any one out there who is truely Gluten free.. I mean checking your deodorant, shampoo everything and you still are not feeling better, have your doc check to see if you have refractory Celiac. Have a great Day

Is your doctor re-running the complete Celiac panel on you for dietary adherence? Testing only the tTg is not the correct way to test for dietary compliance. Elevated tTg can happen due to other autoimmune issues so you may have another disease going on that is causing it to remain high and it may not be from ingesting gluten at all. Liver disease, Hashi's thyroid disease are just 2 of the other problems that can keep tTg high. The AGA IgA/IgG or the newer version, the deamediated gliadin test is the correct one to do to check for gluten ingestion.

As I understand it, Refractory Sprue will keep you sick even if you are following a strict gluten-free diet. So you could be doing well as far as not ingesting gluten but still not heal. That is why they sometimes use chemo drugs to quiet the immune system down to allow you to heal. I have a friend who is undergoing that right now and it isn't the same as being treated for cancer. They use ultra low doses and it doesn't prevent you from working or living a somewhat normal life while being treated. You don't lose your hair or any of the other nasty side effects.

I wouldn't automatically assume you are ingesting gluten, especially if you are eating the way you say you are. Have them run the correct test and see what that shows. I would also recommend they screen you for other autoimmune diseases that are common to Celiac. That could be the problem. I wish you well and hope you are on the road to recovery soon!