New, Young, Very Very Sick

[skipper240]

Hi,

i'm 23 and i am extremely sick and have 0 diagnosis after $25k in debt after insurance, 20 doctors, specialists all over from UCLA and cedar sinai. I'm currently still working with them to find out what's wrong.

Basically, ONE of the aspects of my health among many, is gastrointestinal problems. I've been dealing with medium inflammation for 3-4 years on and off that would be aggravated with things like alcohol, yeast products, whey protein, etc. But otherwise, i was doing good, normal formed bowel movements on the dot everyday. However after a course of antibiotics and a flareup of bacteria/yeast, i have never been the same. i can't eat anything, ive developed food sensitivities and bloat up after every meal. I get weird dull pains and a sense of fullness in my small intestines.

I have so many question and confusions. I need to be at least functional and walking again agh.

ive had the gliadin ab test done and it was 5. which is low. you need at least 15 to be positive. but my SIgA was deficient.

My doctor wrote me a lab prescription to get tTG Antibody IgA tested but from what i read, that won't be accurate either and can yield false negative because i have iga deficiency.

Should i ask him to also get tTG IgG as well? both? none?

What about ELISA IgG food allergy tests that test your blood IgG and IgE reactions to gluten? Is that useful for celiacs or is that only for gluten allergy/sensitivity type?

I've been on a very relaxed "gluten free" diet ...eating some gluten in crackers but not wheat or any of those types.. will my test be sensitive or do i need to start eating wheat bread for a week before i test?

Is celiac's curable permanently? are there any members (even rarely) that have been cured of celiacs and been able to eat gluten after their gut has healed, etc?

a lot has been running through my mind. any help appreciated. low money and energy. thank you

[luvs2eat]

Hi,

i'm 23 and i am extremely sick and have 0 diagnosis after $25k in debt after insurance, 20 doctors, specialists all over from UCLA and cedar sinai. I'm currently still working with them to find out what's wrong.

Basically, ONE of the aspects of my health among many, is gastrointestinal problems. I've been dealing with medium inflammation for 3-4 years on and off that would be aggravated with things like alcohol, yeast products, whey protein, etc. But otherwise, i was doing good, normal formed bowel movements on the dot everyday. However after a course of antibiotics and a flareup of bacteria/yeast, i have never been the same. i can't eat anything, ive developed food sensitivities and bloat up after every meal. I get weird dull pains and a sense of fullness in my small intestines.

I have so many question and confusions. I need to be at least functional and walking again agh.

ive had the gliadin ab test done and it was 5. which is low. you need at least 15 to be positive. but my SIgA was deficient.

My doctor wrote me a lab prescription to get tTG Antibody IgA tested but from what i read, that won't be accurate either and can yield false negative because i have iga deficiency.

Should i ask him to also get tTG IgG as well? both? none?

What about ELISA IgG food allergy tests that test your blood IgG and IgE reactions to gluten? Is that useful for celiacs or is that only for gluten allergy/sensitivity type?

I've been on a very relaxed "gluten free" diet ...eating some gluten in crackers but not wheat or any of those types.. will my test be sensitive or do i need to start eating wheat bread for a week before i test?

Is celiac's curable permanently? are there any members (even rarely) that have been cured of celiacs and been able to eat gluten after their gut has healed, etc?

a lot has been running through my mind. any help appreciated. low money and energy. thank you

There are others here who are knowledgable about your tests... I am not. But I can tell you that at this time, the ONLY treatment for celiac disease or gluten intolerance is a gluten free diet. That means NO gluten... EVER. You can't eat gluten after your gut has healed.

I'd get back to super basics if I were you... plain lean meats, veggies, fruits, and brown rice. Hope it helps!

[tarnalberry]

ive had the gliadin ab test done and it was 5. which is low. you need at least 15 to be positive. but my SIgA was deficient.

My doctor wrote me a lab prescription to get tTG Antibody IgA tested but from what i read, that won't be accurate either and can yield false negative because i have iga deficiency.

Should i ask him to also get tTG IgG as well? both? none?

What about ELISA IgG food allergy tests that test your blood IgG and IgE reactions to gluten? Is that useful for celiacs or is that only for gluten allergy/sensitivity type?

I've been on a very relaxed "gluten free" diet ...eating some gluten in crackers but not wheat or any of those types.. will my test be sensitive or do i need to start eating wheat bread for a week before i test?

Is celiac's curable permanently? are there any members (even rarely) that have been cured of celiacs and been able to eat gluten after their gut has healed, etc?

If you are IgA deficient, ANY IgA antibody test (tTg, antigliadin, EMA) will be useless; the reference ranges simply don't apply to you. At the least, you'd need IgG tests. General food allergy IgG tests may not tell you about celiac either; I don't believe they look for tTg or antigliadin antibodies in that particular test). IgE tests won't tell you a thing about celiac, since celiac disease is not an IgE immune mediated condition.

You need to be eating at least three slices of bread (or the equivalent) for at least three months for the tests to be reasonably reliable, but that doesn't guarantee you won't get a false negative. If you are gluten free, or even too light in gluten, prior to the test, the test will be worthless.

Celiac disease, in so far as it is an autoimmune reaction to gluten, is "curable": don't ever eat gluten and you won't ever have the autoimmune condition. Converting to gluten free is a steep learning curve, but once you get there, it is totally doable, and it is the ONLY way to prevent damage to the intestines, and potentially other areas of the body.

[skipper240]

If you are IgA deficient, ANY IgA antibody test (tTg, antigliadin, EMA) will be useless; the reference ranges simply don't apply to you. At the least, you'd need IgG tests. General food allergy IgG tests may not tell you about celiac either; I don't believe they look for tTg or antigliadin antibodies in that particular test). IgE tests won't tell you a thing about celiac, since celiac disease is not an IgE immune mediated condition.

You need to be eating at least three slices of bread (or the equivalent) for at least three months for the tests to be reasonably reliable, but that doesn't guarantee you won't get a false negative. If you are gluten free, or even too light in gluten, prior to the test, the test will be worthless.

Celiac disease, in so far as it is an autoimmune reaction to gluten, is "curable": don't ever eat gluten and you won't ever have the autoimmune condition. Converting to gluten free is a steep learning curve, but once you get there, it is totally doable, and it is the ONLY way to prevent damage to the intestines, and potentially other areas of the body.

Thank you for the detailed explanation. I told my doctor that i am SIgA deficient (or was a few months ago) and he still prescribed the tTG IgA. Should i call him and ask to add/change to the IgG instead?

So how do you know whether you have celiac's disease or just a gluten sensitivity because of something like a leaky gut or something? I was reading Enterolab's FAQs and it says that a stool test is the most accurate but they also test for IgA and doesnt mention anything about being IgA deficient.

Could it be possible to have a gluten IgG allergy but not celiac disease that's causing the gut inflammation?

What i don't understand is, how i developed celiac disease (if i have it) I don't eat anything wheat, rye or barley other than white bread. (not anymore either) My entire family and relatives do not even know what that is, it is unheard of. And symptoms wise, I've had chronic digestion issues for 3 years which is why doctors want to get celiac but they never do it properly NOR do they listen to my symptoms! During the 3 years, I've had "remission" months at a time where i was having gut problems and being completely 100% better with no inflammation and being able to eat anything and even binge drink with no problem/inflammation. I'm being tested for leaky gut so food allergy inflammation might have something to do with it but i'm not sure how celiac or gluten would fit in the picture. Does celiac cause leaky gut? (they say small amount of celiac have IgA deficiency) or does prolonged leaky gut and developing food sensitivities start a reaction to gluten and cause gluten sensitivity?

[GFinDC]

...

So how do you know whether you have celiac's disease or just a gluten sensitivity because of something like a leaky gut or something? I was reading Enterolab's FAQs and it says that a stool test is the most accurate but they also test for IgA and doesnt mention anything about being IgA deficient.

Could it be possible to have a gluten IgG allergy but not celiac disease that's causing the gut inflammation?

I think that's a really good question! But I don't think anyone really knows the answer either. Some people think gluten intolerance can develop into celiac disease. Seems reasonable to me. But I don't think there is any proof of that. And leaky gut is a weird one. What I read is some reserch by Dr. A. Fassano saying the some celiacs intestines can let small particles of gliaden fragemnts into the blood stream. Something about a chemical signal called zonulin that keeps the intestinal cells open longer than normal I think. A leaky gut. Seems to me some people think that means the intestines are like a sieve and let all kinds of things through that they shouldn't. That is not correct IMHO. But I am no expert on it, so take it with a grain of salt. I have also read that some people think candida yeast can penetrate the intestinal walls and cause leaky gut. That's one I don't know if there is any truth to really. Sounds possible but I just don't know.

Feces getting out of the gut and into the body cavity is a pretty darn dangerous thing though and can kill a person darn pretty quick. That's what happened to my brother years ago when a fistula ruptured after an accident.

Getting a bit off topic I guess. Celiac is "diagnosed" by damage (blunting) of the intestinal villi. Some docs diagnose based on positive antibodies and a dietary response. But you can have antibodies without intestinal damage, and that is called gluten intolerance. That is not an ok condition though, as people do say that gluten intolerance can lead to other autoimmune diseases in the body just like celiac. There are conditions called silent celiac and latent celiac also, where a person seems to have no digestion symptoms. There are articles on the main web site here about it.

I don't know if any of that helps you. But the upshot is if you feel bad eating gluten, even if a doctor doesn't say you have celiac, you still shouldn't eat gluten. Doctors are just people, and people don't know everything.

You might want to read up on elimination diets also. Quite a few of us have other food intolerances in addition to gluten.

[skipper240]

I think that's a really good question! But I don't think anyone really knows the answer either. Some people think gluten intolerance can develop into celiac disease. Seems reasonable to me. But I don't think there is any proof of that. And leaky gut is a weird one. What I read is some reserch by Dr. A. Fassano saying the some celiacs intestines can let small particles of gliaden fragemnts into the blood stream. Something about a chemical signal called zonulin that keeps the intestinal cells open longer than normal I think. A leaky gut. Seems to me some people think that means the intestines are like a sieve and let all kinds of things through that they shouldn't. That is not correct IMHO. But I am no expert on it, so take it with a grain of salt. I have also read that some people think candida yeast can penetrate the intestinal walls and cause leaky gut. That's one I don't know if there is any truth to really. Sounds possible but I just don't know.

Feces getting out of the gut and into the body cavity is a pretty darn dangerous thing though and can kill a person darn pretty quick. That's what happened to my brother years ago when a fistula ruptured after an accident.

Getting a bit off topic I guess. Celiac is "diagnosed" by damage (blunting) of the intestinal villi. Some docs diagnose based on positive antibodies and a dietary response. But you can have antibodies without intestinal damage, and that is called gluten intolerance. That is not an ok condition though, as people do say that gluten intolerance can lead to other autoimmune diseases in the body just like celiac. There are conditions called silent celiac and latent celiac also, where a person seems to have no digestion symptoms. There are articles on the main web site here about it.

I don't know if any of that helps you. But the upshot is if you feel bad eating gluten, even if a doctor doesn't say you have celiac, you still shouldn't eat gluten. Doctors are just people, and people don't know everything.

You might want to read up on elimination diets also. Quite a few of us have other food intolerances in addition to gluten.

I guess you are right, nobody knows! What I was wondering is when they do a biopsy and see the flatten villi in the small intestine, how do they know whether it is from celiac and gluten damage or from other food allergy inflammations?

I guess ive made a bit of a mess. I'm on a relaxed gluten free diet. 90% gluten free but once in a while i'll eat some crackers or something that might contain trace amounts of gluten. I never eat actual wheat rye barley or oat products though. If i want an accurate test, i will have to start eating gluten like crazy for weeks i think, to get an accurate reading. But that means, worsening my health and intestine inflammation ive worked hard to try and heal. The other method is to just go completely gluten free but that means i'll never have a diagnosis. Not a good place to be in.

I also thought about just getting the tTG antibody checked anyway but i'm IgA deficient so it's not going to be accurate anyway!

Currently I am awaiting a food allergy test IgG that will show gluten and wheat allergies. If it does not come up or if something else comes up that makes more sense, I will know more.

Where did everyone learn to go gluten free? I don't even know what has gluten .. EVERYTHING has gluten in it. Who knew that "modified food starch" is gluten. Geez, how do you eat out ever, or do anything social? Don't mistake what i'm saying though, i would rather give up gluten and restaurants and be houseridden any longer!

[lizard00]

Thank you for the detailed explanation. I told my doctor that i am SIgA deficient (or was a few months ago) and he still prescribed the tTG IgA. Should i call him and ask to add/change to the IgG instead?

YES! As you already know, a tTG IgA test for you will prove nothing. There is a tTG IgG test available, and that is the one that should be performed on you. It's there. I had to tell my son's ped to look it up because he didn't think there was such a test. But when we first had him tested, I wanted to cover all bases in case he was deficient, because I am. Long story short, my GI wanted me to do a challenge and then he was going to use this test, along with an endoscopy. I just wouldn't agree to it.

[Wolicki]

Where did everyone learn to go gluten free? I don't even know what has gluten .. EVERYTHING has gluten in it. Who knew that "modified food starch" is gluten. Geez, how do you eat out ever, or do anything social? Don't mistake what i'm saying though, i would rather give up gluten and restaurants and be houseridden any longer!

You learn by reading labels, and the safe foods list on this site, and by trial and error. Modified food starch in the US does NOT contain gluten. If it is derived from wheat, it must say "derived from wheat or wheat source." STart with whole, fresh unprocessed foods and it is a lot easier in the beginning.