Celiac?

[luckitri]

Do you know anyone who is celiac who is successfully raw?

Or, do celiacs have more difficulty being, becoming 100% raw?

Any sites to share on this topic?

[lafsalot]

For a complete list of foods to avoid http://gfkitchen.server101.com/FoodstoAvoid1.htm ~ Cathy

[luckitri]

Thank you cathy, however looking at the list I doubt that most of the items would be considered for use by raw fooders.

Raw is supposed to be healing but I found some old celiac forums where the posters were mostly against it stating that it aggravated their symptoms.

I would like to read some raw celiac success stories. Anybody know any?

[lafsalot]

The list I sent was of foods to "avoid" (gluten), so I am a little confused as to why you would think you could not eat raw, especially since the author states that the Farmer's Market is her best friend, and encourages others to eat fresh vegetables and fruits:confused: Type out "Gluten sensitivity..a thought" and the "I need to talk to a celiac" in the search engine here - might help. ~ Cathy

[juliebove]

Should be very easy to do a gluten free diet on raw. You'd need to avoid nama shoyu, wheat, oats and barley. Not sure about wheatgrass. That has been discussed and seems controversial.

On a raw diet, everything is pretty much straight forward. The main problem with gluten is that it lurks in prepared foods where you'd least expect it.

[juliebove]

Thank you cathy, however looking at the list I doubt that most of the items would be considered for use by raw fooders.

Raw is supposed to be healing but I found some old celiac forums where the posters were mostly against it stating that it aggravated their symptoms.

I would like to read some raw celiac success stories. Anybody know any?

From what I have read, this is mainly in the beginning stages. I tend to hang out at celiac forums because my daughter has a gluten allergy. But while she must avoid gluten, her symptoms are not necessarily the same as a celiacs.

When one has damaged villi, it can be tough to digest some foods. I've seen lettuce mentioned. However, I think this varies from person to person. I've seen some people who said they could not eat potatoes or rice and others said that they could.

If you are in the healing phase, you might need to stick to a very limited diet for a while until your villi have healed.

[luckitri]

Hi Cathy, there is much mention of celiac on here but perhaps a dedicated celiac thread would help. In search I saw a newcomer question raw with her celiac and really get no answers except psychological to the IBS type symptoms of it and I have seen it mentioned in reference to autism. The list that you gave is good but most of the ingredients would not be used by raw fooders and on the "safe" list is aluminum mentioned which I totally don't get.

I understand what juliebove is saying much better. For celiac apparently they are not doing raw 100% because it aggravates their symptoms which is why I wish to hear from celiacs who are doing raw. Maybe certain raw foods need to be avoided for a time. Perhaps it is a matter of time as juliebove suggests for healing - yet some sites say the healing will never happen - it is done. Children with celiac symptoms maybe have a better chance if their parents understand and change their diet.

gotta share with my son now.

[dreamrawalwz]

Do you know anyone who is celiac who is successfully raw?

Or, do celiacs have more difficulty being, becoming 100% raw?

Any sites to share on this topic?

ME! Being raw is SO easy with being celiac. I just don't have the grains and it's that simple. There is still a huge range of foods to eat: sprouts, nuts, seeds, fruits, veggies. I just don't sprout grains.

[belle]

I have suffered from painful IBS since I was a young child... allergic to gluten as well... RAW has been nothing short of a miracle for me and my digestion... :)

[Cinnamon]

I have suffered from painful IBS since I was a young child... allergic to gluten as well... RAW has been nothing short of a miracle for me and my digestion... :)

I could have typed this exact statement! I just don't sprout or use grains. I'd been using truly raw oats because this didn't seem to bother me but then worried they were not really gluten free. So I inquired and found out they were not gluten free so I avoid them now. I do slip with grains every now and then, but pay for it and am reminded why I am avoiding them! I am a slow learner?!

[trinity082482]

Raw is super easy for people with celiac. My "taste tester" friend was vegan is now vegetarian and has a bad case of celiac disease. She eats all of my raw meals and loves it. I guess there isnt much wheat or gluten in raw foods?

[faith4u]

I think raw is one of the easiest ways for a celiac to eat.

There isn't a whole lot of things that most raw foodists that eat that have gluten.

Not to mention that we, as celiacs, tend to have impaired digestive systems. Eating raw foods helps that a lot. I have especially found that the green smoothies/puddings helps me a lot too.

As a celiac I ate a cooked vegan diet for 8 years before going raw. I have been raw for 2 years. It has been very easy to be/stay raw.

[barose]

I was never diagnosed with Celiac because my doctor refused to run the tests but I definitely have a gluten intolerance. I cannot eat anything with gluten. I simply cant digest it. Also, I have horrible skin problems on gluten (which is how I was able to diagnose myself with the allergy).

With raw, its easy as pi to not eat gluten. Even packaged raw foods rarely have gluten.

Now I'm still having problems with digestion as indicated in my last threads, but at least its not caused by gluten.

[luckitri]

Thanks all!

Dream, I realized you had part of your intestine cut out as a baby but did not know you were full-blown celiac!

I personally have not been diagnosed yet due to medical morass but due to my multiple symptoms of vitamin/mineral deficiencies as well as IBS and other symptoms it was recommended by a doctor to have the testing.

Barose, it is obscene to not have the testing. You may need the documentation at some time in the future. Makes me want to see "Sicko" that much more.

juliebove, perhaps you know of some boards that are currently active for celiacs who are eating raw?

I hope to get the confidence to start making my own fermented foods and was wondering how celiacs do with that? If it is helpful? Spices needed to avoid?

[yasi]

I took a look at that list and it has 2 things on it that are false... I have a friend with a son who is lethally celiac- in other words, he is so sensitive that he will go into anaphalactic shock from TOUCHING anything with gluten in it. That said, he THRIVES on barley and wheat grass. The reason that barley and wheat grass is so often included is because unless you grow it and process it yourself, you can't be sure it hasn't been contaminated. However, there is NO gluten in grass!

[firefaery]

I have celiac, as does my daughter. We have done VERY well on raw. It was a blessing to find it. We also have to avoid dairy and soy (as do most celiac patients) so raw was the logical choice in our house!

It absolutely didn't aggravate symptoms. We have been great, and becasue we eat raw we avoid many cross contamination dangers that most are susceptible to.

[firefaery]

I took a look at that list and it has 2 things on it that are false... I have a friend with a son who is lethally celiac- in other words, he is so sensitive that he will go into anaphalactic shock from TOUCHING anything with gluten in it. That said, he THRIVES on barley and wheat grass. The reason that barley and wheat grass is so often included is because unless you grow it and process it yourself, you can't be sure it hasn't been contaminated. However, there is NO gluten in grass!

Celiac disease is an IgA mediated response, not IgE. You dont' go into anaphylactic shock as a celiac. Sounds like he has an allergy to gluten as well as celiac disease. That is no fun, but they shouldn't be confused.

We do wheat grass as well as barley grass. There is no gluten in the grass, as yasi said.

[Bridle7]

This thread is really interesting.

I am celiac and found when initially diagnosed a lot of raw was hard on my compromised system -- green smoothies/blended foods were fine but had problems with non-blended foods and soaked nuts [two years later I thrive on blended green smoothies and ripe juicy fruit]. As far as grasses I know that they do not contain gluten but my MD explained that a lot of celiacs have multiple allergies and sensitivities -- many of us react to grasses. When I started wheatgrass it appeared at first that it was detox reactions and was told to switch to barley. Both the certified naturopath I was seeing and a raw guru that was coaching me insisted it was detox. Ultimately my MD tested me and yes I'm allergic to the grasses I was tested for (spelt, wheat and barley). What I was reminded is that detox-type symptoms can create allergic type reactions and then many well meaning health practitioners and raw advocates do not know much about celiac and common problems associated with it. If you want an relatively inexpensive way [vs. the costs of the diseases associated with celiac and the damage to your body] to get tested for celiac (and other reactions to soy, eggs, dairy etc.) check out Enterolab in Dallas Texas (if you google them their site comes up) -- note, did not put a link because I don't think we are supposed to.

[juliebove]

I took a look at that list and it has 2 things on it that are false... I have a friend with a son who is lethally celiac- in other words, he is so sensitive that he will go into anaphalactic shock from TOUCHING anything with gluten in it. That said, he THRIVES on barley and wheat grass. The reason that barley and wheat grass is so often included is because unless you grow it and process it yourself, you can't be sure it hasn't been contaminated. However, there is NO gluten in grass!


One doesn't go into anaphalxic shock from celiac. That's an allergy. I suppose he could have both.

[luckitri]

I am curious to know for those who are diagnosed celiac - do you remember what tests were run to make the diagnosis?

I am reading that there are several ways to verify that are not as invasive as colonoscopy?

[luckitri]

Another question . . . . . is anyone aware of a relationship between prescription drugs and celiac - like for people who have late onset celiac - maybe some of those Rx taken in younger years that tore up the stomach helped to create this condition? Or conversely, people with celiac have intolerance for many Rx's due to the condition of the intestine?

[walnutty]

YES! Please post what tests need to be done to accurately diagnose celiac disease. I thought for a long time that I had to have it, but my doctor took a small blood sample and said I didn't. This confuses me. If it truly was that simple then why wouldn't all of you just have the blood test? It makes me wonder if the test my doctor did on me was NOT accurate at all??? Please help...

[dreamrawalwz]

I had a blood test which came back positive, then I had an endoscopie (the one down your throat for another reason, but they looked for damage by the celiac at the same time. That turned out negative, but it was probably due that we caught it early and damage was not done yet.

[firefaery]

THe only way the medical community will diagnose you with celiac is if either the genetic test or the TTG comes back positive. That is not a diagnosis. Now you have to have a series of 3 scopes-one immediately, one several months off gluten and one back on. That is the gold standard.

Not every doc will demand all of that, but in general that's what they want for it to be on your record.

The trans-tissue glutamase (TTG) is the most common test. The IgG to gluten can be used, but that's not for true celiac. The IgE would check for a true allergy (again, not celiac, but often run a the same time) and hte IgA checks for Immunoglobulin A deficiency which almost always happens hand in hand.

The genetic test tells you whether or not you are a carrier. IF you have classic celiac symptoms and this test comes back positive as far as I'm concerned no further testing is necessary.

I'm not one of those people who needs to have things on a medical record. I don't believe in the scopes as it further damages an already compromised system. IF the TTG and the IgG or IgA or IgE comes back positive-again I don't seek further testing.

I had many drugs as a child, so yes I had a good imbalance going. I could be considered late onset, however my symptoms traced back to childhood. My daughter was born at home, never immunized, never given any medications whatsoever and was failure to thrive due to her celiac. It can go both ways.

[luckitri]

Wow firefaery! I am so impressed with all your knowledge! Thank you! You have really helped me because I have to see the doctor in a few hours. (They originally wanted to do the expensive invasive scope thing on me immediately.) (Due to changing insurances and finances it didn't happen.) (yay!)

[firefaery]

Ugh. Don't be! It's all a part of learning how to advocate for yourself. IT is essential in my opinion to research everything to death. I don't rely on docs for help, other than in asking for tests. I also find when I go in knowing (often times) more than they do about my options they take me more seriously and are more inclined to work for me.

I really don't use MD's, but when I've had a brush with them they so often don't explain things, are condescending and have no time for you. My feeling is that if I'm paying you, then you work for me. They don't tend to share that opinion. :rolleyes: IF they aren't going to give me full disclosure, I will find everything I need to know and tell THEM what is going to happen. This part to me is the most important when you have children. My obligation is to myself and my kids. I go into everything knowing what all the ramifications are.

I don't believe in labels. At all. My dd clearly has celiac, she has every symptom, all the physical characteristics, was genetically positive and tested IgG reactive to all gluten containing grains. There was no way I was going to let her be scoped. Incidentally it is on her record that she is celiac because I have a great doc. However if the scope stood between us and a label, she wouldn't have gotten labelled. I would have treated her as such (gut healing, removal of gluten and other offending allergens, resetting system and homeopathy) and moved on with our lives.

Hopefully this helped you a bit!

[luckitri]

Yes, some of us need the labels of our illnesses so we can get our retirement and or disability monies due us during the time we are trying to get well and functional again. Only good reason I can see.

It is true that a good doctor will appreciate your effort to understand in advance of the appointment - then there are the others who simply wish to let you know how little you really still know instead of filling out the gaps in your knowledge.

Then at one time I had a doctor from Egypt who told me that I was being a difficult patient because I wanted to understand my Cushing's disease. He told me nothing. Then the next time I brought my husband thinking that I would get more information out of him - well kinda - he spoke to my husband the whole time as if I were not there and as if I were a possession of not much value because I was damaged with disease.

[firefaery]

That's really sad. Most wish you knew less. I just don't help them out there at all.

Labels can do many things....a label can help with taxes, government aid and so on. I don't begrudge anyone who wants or needs one. For those who don't I'm jsut providing a different perspective.

How did your appointment go?

[luckitri]

He made me cry. He also spoke at me so loudly that everyone in the waiting area could hear. (Just below a scream.) I wish my husband had come in with me but he stayed in the waiting area because he was tired and because he has seen me be very abused by doctors before right in front of him and he does not know what to do any more. Thanks for asking. Now I am crying again. I thought I had put it away. I guess there is alot of fear involved because their medicines always put me at deaths door but I need their tests to find out what is wrong if I want to find a holistic answer. Also because when you get older they want to say that you just are not aging well or it is a normal process of aging rather than find a solution. (I am not that old yet but getting there so I want to get this resolved and get functional again.)

Well at least I have been doing green smoothies every day. It is very time consuming to me. I have to go to the store every other day to get greens. Then I have to wash and dry them in towels so they don't rot. I suppose it would be quicker to just wash them prior to use but then alot of rot will occur from the store spritzing them every few minutes.

These last few months I was too ill to take myself to store or to wash greens or anything like that on a regular basis so I am getting better.

I would like to find a doctor with a better attitude but don't have many options now.

[barose]

I'm so sorry you had such a horrible experience. I had a similar experience several months ago so I understand the feeling.

I know VFL (or someone else here) freezes her greens until she makes her smoothies. It extends the life of the greens and makes the smoothies frosty as well - I hate warm smoothies myself.

[firefaery]

Oh I'm so sorry! I wish I could climb right through the computer and give you a hug! It is absolutely criminal the way some people treat others. I just don't understand it. I hope you find the help you need very soon.