Question For Old Timers

[Waverlywoods]

I'm new here, but I was wondering if anyone, after a very long time gluten-free has noticed that they have become MORE gluten tolerant? For example, accidentally eats some contaminated food and no longer gets a reaction. This to me would indicate substantial healing has taken place.

[YoloGx]

I'm new here, but I was wondering if anyone, after a very long time gluten-free has noticed that they have become MORE gluten tolerant? For example, accidentally eats some contaminated food and no longer gets a reaction. This to me would indicate substantial healing has taken place.

I have had substantial improvement and lessening of the duration and difficulty of my symptoms. Only thing is that recently I got glutened frequently at my mother's--and it took me back some paces. I have since left, but now am more sensitive than I was this last year. I expect I will get better again however. At least I am not as reactive as I was originally.

So yes there is hope at the end of the tunnel. You just have to not abuse it.

Bea

[Waverlywoods]

that's great news. I took your advice on the last post and eliminated trace gluten. In fact, I'm entirely on meat and veges no processed foods at all (almost) and like you, the heart palpitations stopped. I'm so glad, that whole two weeks or so was scarry! I don't know if I'm a true celiac or not but I hate gluten so much that I will never consume any ever again knowingly! I have heard that to get a diagnoses I will have to start eating gluten for testing purposes? Or get a biopsy of sm intestine?

[NorthernElf]

Sorry but I'd have to say I'm even more sensitive. I have discovered gluten in products one would never suspect. For example, I got sick from Hunt's spaghetti sauce because I thought they were all gluten-free but I had one of the few that weren't & it had no obvious gluten in it (sort of a blind test!). Now, I didn't get really sick but I knew the gluten was there - had stomach cramps that night & felt terrible. I'm usually very careful.

Having said that, people have different degrees of tolerance anyway. I met a diabetic lady who had anemia and got a scope, turns out she had celiac with no digestive or pretty much any other symptoms. I also met a lady who they flew out with suspected stomach cancer, only to find out it was celiac (she couldn't keep any food in !). There is a lot of variation in reactions !

[Jestgar]

I still react immediately, but the reaction is very mild and doesn't last long.

I don't eat a lot of processed food and only eat out at places I've confirmed as safe so I rarely get exposed to anything.

[ravenwoodglass]

My reactions haven't become milder with the exception of my DH which now is just a couple little spots when I used to have horrendous lesions from only trace exposure.

However there are cases where young people will seem to have less of a reaction or seem to have no reaction once they have been off it for a few years, that is why they used to think that children would outgrow celiac. We now know that is not the case and damage is still being done and once you are celiac you are celiac for life.

[YoloGx]

that's great news. I took your advice on the last post and eliminated trace gluten. In fact, I'm entirely on meat and veges no processed foods at all (almost) and like you, the heart palpitations stopped. I'm so glad, that whole two weeks or so was scarry! I don't know if I'm a true celiac or not but I hate gluten so much that I will never consume any ever again knowingly! I have heard that to get a diagnoses I will have to start eating gluten for testing purposes? Or get a biopsy of sm intestine?

Am glad to hear your heart is quieting down and you are feeling so much better!

Yes, I do no processed foods at all. It takes the guess work out of it plus actually is so much healthier. Its much like the cave man diet.

For myself I was able to finally add in most gluten-free grains except corn, soy and coconut (or any seeds of nuts) after I discovered I have salicylic acid (SA) intolerance. Go figure on that one! SA limits my diet since many fruits and veggies and most herbs/spices have high amounts of SA in them--but then it also broadened it too with the addition of grains and a few fruits (which it seems I still need to cook or I react). Reason I mention the SA is that sometimes people with nervous system problems have it too in addition to the gluten--esp. if you continue to have a white tongue in the morning and a slightly distended belly (and its not candida overgrowth).

For your own peace of mind (as well as to convince docs and relatives) you still could have tests done at this point for gluten sensitivity. Testing a stool sample through Enterolabs I have heard is the most effective as well as least invasive. Its more cutting edge but likely will become more recognized by the AMA as time goes on. My belief is that you would have to be off all gluten for at least three months before the stool test would be ineffective. Am I right guys??

For me I was diagnosed as an infant (after I stopped growing and developed pneumonia at age 4 months after being introduced to grains) and then in the fall of 2007, after I went off all trace gluten and rediscovered that I have celiac. I found I was so sensitive it wasn't worth testing. I knew from my reactions--and didn't want to get severely ill again (which I did from CC initially--getting both pneumonia and a bad kidney infection--and probably would do so again given how I started to react badly recently to trace gluten since my lungs started to get raspy again as well as the migraines, D etc.).

However I do have relatives that think I am just making this all up even though my health improved greatly so that I no longer get constant flu, colds. bronchitis, bladder and kidney infections, heart palpitations etc. I also have wavy hair with body rather than thin straight hair, thicker nails, reversed osteoporosis etc. Without going into a huge litany (which hasn't worked with them by the way) I just tell them that I don't have to convince them. I just need to take care of myself and leave it at that.

Bea

[Waverlywoods]

How did you discover your SA intolerance? I'm thinking of doing some broader allergy testing but I've heard people say that the tests are not that accurate and instead do elimination diet and food journal-pay attention.

I did a (Company Name Removed - They Spammed This Forum and are Banned) stool test in april last year that revealed anti-gliadin score just outside the yellow. At the time I was probably eating around 5 to 10 percent the gluten that a normal person would. The clinician told me I was gluten intolerant, but not horribly intolerant. I was convinced I had a candida problem but the test showed no significant amounts. However at that time I was eating raw garlic like it was a snack and taking oregana oil, undecylinic acid ect.. Did not know I should not have been doing that before test.

I plan on retesting when I get reasonably well, to see if where I stand. I did have high putrefactive SCFA which indicates large amounts of undigested protein in stool. Which I can believe because I started taking HCL w pepsin and NOW plant enzymes, both in large amounts, jan 1 and have not had any digestive symptom since. Previously, I had horrible chronic constipation, gas and bloating that could only be kind of held in check with green foods and castor oil.

I had thought being on a candida diet would be gluten free enough, so to speak. But with digestion working fantastically for the first time in 5 years + candida diet my health was still going south. And that's really what brought me here.

thanks! This really is a good support forum.

[YoloGx]

How did you discover your SA intolerance? I'm thinking of doing some broader allergy testing but I've heard people say that the tests are not that accurate and instead do elimination diet and food journal-pay attention.

I did a (Company Name Removed - They Spammed This Forum and are Banned) stool test in april last year that revealed anti-gliadin score just outside the yellow. At the time I was probably eating around 5 to 10 percent the gluten that a normal person would. The clinician told me I was gluten intolerant, but not horribly intolerant. I was convinced I had a candida problem but the test showed no significant amounts. However at that time I was eating raw garlic like it was a snack and taking oregana oil, undecylinic acid ect.. Did not know I should not have been doing that before test.

I plan on retesting when I get reasonably well, to see if where I stand. I did have high putrefactive SCFA which indicates large amounts of undigested protein in stool. Which I can believe because I started taking HCL w pepsin and NOW plant enzymes, both in large amounts, jan 1 and have not had any digestive symptom since. Previously, I had horrible chronic constipation, gas and bloating that could only be kind of held in check with green foods and castor oil.

I had thought being on a candida diet would be gluten free enough, so to speak. But with digestion working fantastically for the first time in 5 years + candida diet my health was still going south. And that's really what brought me here.

thanks! This really is a good support forum.

Just goes to show my intuition was at work again. I don't really know why I thought you might wonder about the candida vs SA or some other allergen question but left it in there anyway.

I think the food journal is a good way to discover what might be ailing you. I did that years ago and it helped me greatly--though obviously I didn't figure everything out. I took my pulse too by the way, which helped a lot (check out the Coco pulse test). I started using a diet of things I normally didn't eat--and was able to figure out most sources of gluten were a no no. It never occurred to me however that someone could have an allergy to vegetables, though I did go off fruits -- after which I noticed green apples were sometimes a problem.

This time however someone on celiac.com noticed one time when I was complaining about not being able to sleep and still had a white tongue despite everything I did to kill off what I thought was candida (including having a no grain diet). I noted that I was helped by taking baking soda, so it was suggested that I might consider trying out a salicylic acid free (more or less) diet. The big clues in retrospect were the distended belly, white tongue, eczema like areas which did not respond to anti fungals, nerves out of whack so I couldn't sleep etc.

In addition as it turned out I already knew I couldn't handle aspirin since it always gave me bruises--just like it did my grandmother. I looked Salicylic Acid sensitivity up on the Internet and said wow this could be me. As I discover more about this diet, I am realizing how much it is like what my grandmother ate. I just wish she had talked about it to me years ago.

From what I understand there are no real tests for SA except trial and error. So far it has really helped clear up most of my eczema "itchy b%$@#ies" in my ears and nethers, plus has gotten rid of the white tongue and puffed out belly -- unless I eat something that has moderate to high SA in it.

I may also be allergic to purines, however I have greatly improved. Its very possible that I should avoid bananas for instance.

Benedryl works for me--against the itchy scabby b%$@#ies plus calms down my nervous twitches at night if I have eaten some offending food--which is another sign. My boyfriend is happy I no longer kick him in the middle of the night...lol!

I don't know if any of this information is useful to you. You could be allergic to something quite different than what I am. Its just a consideration since many with SA do have nervous system complaints. The heart after all is part of the nervous system as well as the venous.

[cahill]

Just goes to show my intuition was at work again. I don't really know why I thought you might wonder about the candida vs SA or some other allergen question but left it in there anyway.

I think the food journal is a good way to discover what might be ailing you. I did that years ago and it helped me greatly--though obviously I didn't figure everything out. I took my pulse too by the way, which helped a lot (check out the Coco pulse test). I started using a diet of things I normally didn't eat--and was able to figure out most sources of gluten were a no no. It never occurred to me however that someone could have an allergy to vegetables, though I did go off fruits -- after which I noticed green apples were sometimes a problem.

This time however someone on celiac.com noticed one time when I was complaining about not being able to sleep and still had a white tongue despite everything I did to kill off what I thought was candida (including having a no grain diet). I noted that I was helped by taking baking soda, so it was suggested that I might consider trying out a salicylic acid free (more or less) diet. The big clues in retrospect were the distended belly, white tongue, eczema like areas which did not respond to anti fungals, nerves out of whack so I couldn't sleep etc.

In addition as it turned out I already knew I couldn't handle aspirin since it always gave me bruises--just like it did my grandmother. I looked Salicylic Acid sensitivity up on the Internet and said wow this could be me. As I discover more about this diet, I am realizing how much it is like what my grandmother ate. I just wish she had talked about it to me years ago.

From what I understand there are no real tests for SA except trial and error. So far it has really helped clear up most of my eczema "itchy b%$@#ies" in my ears and nethers, plus has gotten rid of the white tongue and puffed out belly -- unless I eat something that has moderate to high SA in it.

I may also be allergic to purines, however I have greatly improved. Its very possible that I should avoid bananas for instance.

Benedryl works for me--against the itchy scabby b%$@#ies plus calms down my nervous twitches at night if I have eaten some offending food--which is another sign. My boyfriend is happy I no longer kick him in the middle of the night...lol!

I don't know if any of this information is useful to you. You could be allergic to something quite different than what I am. Its just a consideration since many with SA do have nervous system complaints. The heart after all is part of the nervous system as well as the venous.

Thanks for posting this Bea,

I am at the point where I ( meaning I , my doctors have not got a clue ) am try to pinpoint if it is Candida or something else going on.

Thank you

[cahill]

I had thought being on a candida diet would be gluten free enough, so to speak. But with digestion working fantastically for the first time in 5 years + candida diet my health was still going south. And that's really what brought me here.

thanks! This really is a good support forum.

I ,my self, am considering the gluten-grain-soy -nightshades free-Candida-SCD -low SA -DIET

(I am joking when I say that but honestly at this point it is pretty close to the truth )

[Waverlywoods]

1956Chill- Ha ha, yeah that's so funny, basically a "food" free diet. Not really though, to me it seems sometimes like our bodies are literally being pushed into a paleo diet. Even paleo ways like movement rather than sitting for long periods of the day. And communitty vs. living alone. All these things work together to either promote or degrade health over the long haul... Just my opinion

[cahill]

1956Chill- Ha ha, yeah that's so funny, basically a "food" free diet. Not really though, to me it seems sometimes like our bodies are literally being pushed into a paleo diet. Even paleo ways like movement rather than sitting for long periods of the day. And communitty vs. living alone. All these things work together to either promote or degrade health over the long haul... Just my opinion

Until recently , I had been vegan /vegetarian for most of my adult life ,,,

The common denominators ( that each of these diets consider allowed/legal foods),, that I have found(( I am still looking for more)),,in the Candida,SCD,GAPS,Gluten Free, low SA are :

Fish

Eggs

Meat

Poultry

I find that meat is what my body is able to tolerate,, some days meat is the only thing it tolerates ,,,

so it looks like my body has chosen paleo

[YoloGx]

I agree--it is funny! We could all just become "breatharians" assuming we didn't want to eat meat!

Though like I said, for me, I actually started being able to handle eating most gluten-free grains and a little fruit after discovering SA's were a huge culprit for me. Whereas before this I couldn't or at least didn't think I could/should eat any grains or fruit. I was on a hybrid scd and paleo diet--not to speak of the anti candida diet. I ate so many zucchini pancakes etc. you wouldn't believe. I ground sunflower seeds and used them as a "flour" since I coulnd't tolerate almonds--another sign of SA intolerance actually. But all those zukes and I found I could hardly sleep at all and was itching like crazy.

Most fortunately I am not reacting to powdered stevia--which is what I use for a sweetener. I was told last year and a half ago that it is NOT SCD approved. Honey (which IS SCD approved) is way full of SA's so its off MY list as it turns out (previously I found from experience that for me honey was a huge no no in spite of it being loved by SCD'ers--another reason I thought I had candida or some other such fungi).

Also carob I find now is wonderful. I just have to buy it in bulk from an herb and nutrition supplement store here in San Jose. They don't sell food so there is no danger of CC from gluten. I also had them check to make sure the source had no CC from gluten too. This bulk carob seems to be fine for me since it appears to be low in CC from tree nuts, whereas the pre-packaged carob from WF is contaminated from CC with tree nuts--which is probably why I used to think I couldn't handle eating carob. Now it actually is calming and very agreeable. Whereas for me chocolate is out, probably again due to purines.

Complicated, eh? But do-able... The Low SA lists also often list purines, which is why I started thinking they could be a problem for me too since I still have problems with bananas and chocolate both of which otherwise are fine with those who have SA intolerance.

Nevertheless, I wouldn't wish this diet on anyone, unless they needed to be on it--lol!! But if you do need it, it can be a godsend...as it has been for me. Just goes to show how we human beings can be adaptable when necessary.

Bea

[cahill]

since I coulnd't tolerate almonds--another sign of SA intolerance actually. .

oh my I though I had RECENTLY developed an allergy to Almonds .... I will certainly be doing some more research on SA Intolerance

I am seeing my doctor on Thursday,, I am HOPING She can say yes it is or no it isn't Candadia ,

Thanks again Bea