21 replies to this topic

[Baddfrog]

I'm reading a lot of info on how many Celiac's are not healing even on a gluten free diet. I am crazy cautious, strict and never cheat (of course that's because the first time I tried to it wasn't pretty!). Even after 3 1/2 yrs gluten free, I can't say I feel fabulous. When I was scoped my doctor told me that he didn't even need to wait for results because my villi were obliterated. So, I've read some stuff on trying to minimize Corn, Soy, dairy and other things in order to see if that helps. I'd love to hear from some people who started with a lot of damage and how long it took them to heal and diets/supplements that may have helped.

Thanks!

Scott

[Bubba's Mom]

I'm reading a lot of info on how many Celiac's are not healing even on a gluten free diet. I am crazy cautious, strict and never cheat (of course that's because the first time I tried to it wasn't pretty!). Even after 3 1/2 yrs gluten free, I can't say I feel fabulous. When I was scoped my doctor told me that he didn't even need to wait for results because my villi were obliterated. So, I've read some stuff on trying to minimize Corn, Soy, dairy and other things in order to see if that helps. I'd love to hear from some people who started with a lot of damage and how long it took them to heal and diets/supplements that may have helped.

Thanks!

Scott

I'm much newer to this than you. I've been gluten-free for 9mos. I've cut out most of the other top 8 allergens for now.
I take a lot of supplements to keep my vitamin/mineral levels up in the normal range as I'm healing. I also take digestive enzymes, and probiotics.

I would say it might be time to have your Dr. run a vitamin/mineral blood panel to see if there's anything you're low on? A good multi-vitamin, D3, fish oil, and B complex are good things to stay on with any sort of villi damage, and helps cover the basics. I will always take these..for the rest of my life. I also take L-glutamine which is supposed to help heal villi.

It can take years for damage to heal when it's severe like yours was. I was told mine was like yours..no microscope needed to see the damage.

I wish the Dr.s would be more knowledable about this. The ones I've seen seem to think we should heal immediately once we take away gluten, and that's all we need. I was even accused of cheating on the diet. My reactions are severe. There's no way I'm going to knowingly ingest gluten!

Best wishes to you. I hope you get some answers.

[Baddfrog]

Thanks for your thoughts. I've just started the glutamine per the advice of a friend who is a nutritionalist. I just had my bloodwork run yesterday, so I'm waiting for those results. How much of a difference do you notice with the enzymes or glucosamine...can you tell when you've forgotten them for a while?

[T.H.]

If you are in the USA, it may be worth your while to call up the companies making your gluten free foods to ensure that your food suppliers are being as careful about gluten as you are.

Here in the USA, there is no law currently regulating our gluten free food, so while some companies are very good about testing every batch of their gluten free products for gluten, some are not. A few companies do not test their products for gluten content at all. With no regulation, both testing and not testing are legal. There are also naturally gluten free grains, etc... that do not require testing, and a recent small study found some that were definitely gluten contaminated (one soy flour was over 100 times what most people consider a safe gluten free level: 20 ppm)

The study is no longer available on the web, but an article discussing it is:
http://www.suite101....minated-a243716


If the companies meet your desired level of safety, have you looked at what else may enter your mouth? If you chew on your nails or ever lick your fingers, is your hand lotion gluten free? If you kiss anyone, or their skin (like little baby tummies), are the products on their lips/skin gluten free as well? That can be an issue.


And it sounds like you are already thinking about potential allergies/intolerances. Were you ever tested for any food allergies or intolerances? A good allergist who specializes in food allergies might be worth finding and arranging testing with - one who might be willing to do an elimination diet with you, too, so it can catch intolerances as well as allergies, you know?

[diandliam]

I ditto TH;s post. If you are having so many issues being minute with your checks will be worth your while.
Many of us DH/super sensitives have addition considerations: any other grains (corn, quinoa, some rice etc), sals ( google salicylate ((sals for short)) ) and iodine.
First step is going very basic - meat and vege and then after a couple of weeks add one thing at a time.
Keep a food diary .. it is very informative for problem foods/ingredients.

Seems hard work but is worth the time/effort.

[Bubba's Mom]

Thanks for your thoughts. I've just started the glutamine per the advice of a friend who is a nutritionalist. I just had my bloodwork run yesterday, so I'm waiting for those results. How much of a difference do you notice with the enzymes or glucosamine...can you tell when you've forgotten them for a while?

If I skip the enzymes I notice my food doesn't seem to digest very well. I don't usually notice when I skip other supplements other than I just feel more tired.

Hopefully, your blood test will show you if you need to supplement anything.
If those levels are fine, you may have to go with a food log to see if some other food is causing you trouble?
Good luck!

[Baddfrog]

Thanks everyone...I do try to do most of the things that you all have suggested. Although, chewing my fingernails is definitely a tough one to break. I am going to schedule an appt with a food allergist, but haven't done it yet. I've started off going Corn, Soy, Dairy, potato and gluten-free now just to see how that works. I pretty much just eat fruit, grain fed beef, and vegetables. I do have some alcohol (wine or spirits) and black coffee as well. I'm doing something similar to the GAPS diet to start. I don't know if it's overkill or not strict enough...any thoughts? Also, any recommendations on a safe/strong multivitamin...and do you double up if your damaged? I have been using Centrum Silver, but I don't notice any difference when I'm off of it.

One last question...metamucil???

[mushroom]

Thanks everyone...I do try to do most of the things that you all have suggested. Although, chewing my fingernails is definitely a tough one to break. I am going to schedule an appt with a food allergist, but haven't done it yet. I've started off going Corn, Soy, Dairy, potato and gluten-free now just to see how that works. I pretty much just eat fruit, grain fed beef, and vegetables. I do have some alcohol (wine or spirits) and black coffee as well. I'm doing something similar to the GAPS diet to start. I don't know if it's overkill or not strict enough...any thoughts? Also, any recommendations on a safe/strong multivitamin...and do you double up if your damaged? I have been using Centrum Silver, but I don't notice any difference when I'm off of it.

One last question...metamucil???

Did you mean "grain fed beef" or "grass fed beeef:? I eat only organic grass-fed, not just because of the grain but because of all the other junk that goes with it (including the hormones and antibiotics), and also my body screams at me if it is grain-fed I can't suggest a multi-vitamin because that alone is not enough for me. I do take one but it is in addition to lot of other supplements. Maybe why you don't notice much difference when you are off it.... Have you had your nutrient levels tested to find out what you might be specifically deficient in? Oftentimes we need prescription strength supplements to bring us back up to snuff. Things like D, B12, folate, magnesium, potassium, iron/ferritin. The Centrum Silver will not hurt you but it may not help a whole lot either for specific deficiencies -- it is more just a maintenance kind of dose.

If you are looking to add fiber to your diet in addition to what you are getting from your vegetables, psyllium husk is good - no additives.

[Baddfrog]

Grass fed! Oops!

I've never had those vitamin levels run, but I did just have my CBC done and I was at the edge of iron deficient. I'll give my doc a call and ask him for a script to run those.

Thanks for the input so far!

[diandliam]

Very soon I'll be financial enough to go 'grass' (not grain) fed meat eating. It will be a big step for me. "You are what you eat" must also apply to a cow??

[mushroom]

"You are what you eat" must also apply to a cow??

Very true in my experience. Oddly enough, I cannot tell what the pig or chicken ate, but I sure can pick a feedlot piece of beef from a green pastures one (and no, not just the flavour and consistency, but how my body reacts to it.)

[diandliam]

grain fed beef

if you want to get really serious you want to consider the "grain fed" anything. This week coming I am going to eat only lamb and pork as they tend to not be 'grain fed'. Grains tend to include wheat (etc) and although the "gluten-free" regulations consider these meats 'gluten free' it does not necessarily apply to super sensitives. (((This is only my opinion... no science or debate necessary)))

[mushroom]

I by no means consider myself to be a super sensitive when it comes to gluten, but I am super sensitive to a lot of other things. I always try to buy free range chicken and eggs, free range pork (not raised in sow crates), organic grass-fed beef, and ocean-fished salmon (I don't like the idea of fish eating sawdust and food coloring) I think the purer the food supply the better, But this is just trying to get the best quality protein available. I know that we cannot all eat this way, there is not enough pure food left in this world, but so long as I can afford to do it, that is my goal, because the other does affect me. And no, I will not bore you with the details of how it does, but it has a significant impact on my life. Being a Kiwi, our lamb and beef are naturally free range unless someone goes out of their way to make them not so, and with chicken you are taking your chances, although some producers here "proudly" announce they are selling "corn-fed" chicken. Thank goodness they do, so I can avoid it

Since I don't do corn or soy I don't have to worry about the GMO's there. I do worry about dairy. I guess I just close my eyes a bit when it comes to dairy, altlhough I do try to eat sheep and goat cheeses. Most New Zealand cows are grass grazed in summer but goodness knows what beyond silage they are fed in winter. I have some inklings but I try to turn a blind eye to that. You can't worry about everything or you will drive yourself nuts. Just do the best you can to eat clean.

Don't know the nutritive content of fingernails, but so long as they are clean they will probably at least not do you any harm.

[lizard00]

I am 4 1/2 years gluten-free and felt the same way. I kept wondering when I was going to feel fabulous, too. I am one of the super sensitive ones, too. I have also recently found out that I am super sensitive to soy. I knew soy made me sick, but I didn't worry about CC with it. Now I'm going to.

I did the Whole 30. If you don't know what it is, you can google it. Basically, it's no soy, dairy, alcohol, grains, or sugar for 30 days. It was difficult in the beginning, but after my stomach stopped hurting when I ate, it got a lot easier! Maybe for you, maybe not. But unfortunately, as my doctor told me, "once you're damaged by Celiac, you're damaged." Personally, I just can't handle the same foods as I could before, even if they're gluten-free. Or at least a large amount of them. It was also a learning experience for me, ie the soy thing. Maybe you don't need to do anything that drastic, but seems like you are heading in that sort of direction. Then after 30 days of elimination, it might be easier to figure out if it's one specific thing as you add them back in.

[Baddfrog]

Thanks Lizard...I looked at the diet online, and it's pretty similar to the Gap's diet which I am trying. Maybe a little more restrictive though. How long did it take on the whole 30 for you to feel better? And do you feel good? Or just better?

Shroom and di...thanks for the input...I am only eating the grass-fed beef and non-farmed salmon...haven't found any chicken I feel confident in.