A Miracle?!? - Change In My Reaction To Gluten

[heidi g.]

OK now you want to hear my 21 year old side- first of all its just a hypothesis and just because you say things are not possible doesn't mean they aren't. i never said to not eat gluten free i was seeing if its possible to heal and eat normally once again because I BELIEVE that celiac disease and gluten intolerance are two different things. i believe celiac disease is permanent and gluten intolerance is developed by leaky gut, intestinal inflammation, etc. i don't really care to make sure all my grammar is perfect on a celiac website. you can make fun of a 21 year old all day and night apparently but at least im trying to do something good with my life and I've studied my butt off in high school i had prom less nights so i could help people. but if my patients are all going to be like you, i think id do alot better changing my major to psychology because I'd lose my head. get off your butt and try to do something useful instead making fun of someone who is and maybe go to college for a semester and find out that wikipedia is NOT a reliable site.

[Skylark]

OK now you want to hear my 21 year old side- first of all its just a hypothesis and just because you say things are not possible doesn't mean they aren't. i never said to not eat gluten free i was seeing if its possible to heal and eat normally once again because I BELIEVE that celiac disease and gluten intolerance are two different things. i believe celiac disease is permanent and gluten intolerance is developed by leaky gut, intestinal inflammation, etc. i don't really care to make sure all my grammar is perfect on a celiac website. you can make fun of a 21 year old all day and night apparently but at least im trying to do something good with my life and I've studied my butt off in high school i had prom less nights so i could help people. but if my patients are all going to be like you, i think id do alot better changing my major to psychology because I'd lose my head. get off your butt and try to do something useful instead making fun of someone who is and maybe go to college for a semester and find out that wikipedia is NOT a reliable site.

You're making good points, but you are undermining what you are trying to say with arrogance. For starters, it takes a trivial amount of effort to hit the shift key and type with proper grammar. Are you trying to say that we are not worth the trouble? I thought I had some respect for you as a poster, but you just fell seriously in my estimation if that's how you feel. I have another hint for you. The janitor who keeps your classrooms tidy so you can learn is also "trying to do something good with his life." So is the guy who drives the bus you take to school, and the mechanic who keeps your car running so you can get to and from the hospital. You are not a special snowflake and the sooner you learn some humility the better a doctor you will be.

As far as gluten intolerance vs. celiac, you need to do a lot more reading. There is a very clear continuum from some types of genetic gluten intolerance through to celiac and total villous atrophy. Studies on siblings and children of celiacs show progression from mild gluten intolerance to seroconversion and villous damage if the child keeps eating wheat. There are other types of gluten intolerance with somewhat different molecular mechanisms that probably don't lead to celiac, like sensitivity to wheat germ agglutinin, sensitivity to FOS in wheat, or reactions to gliadorphin.

@Irishheart, I believe in the articles "remission" means a person is eating a normal diet with no symptoms or villous damage. I was actually more impressed by the possibility of occasional recoveries when I heard Markku Mäki speak at a symposium. He has seen it in clinical practice, and it's the experiences of clinicians like Mäki that are providing hope for a celiac vaccine and cure.

Do you tell people to try eating gluten? No. Most celiacs will experience a relapse and conservatism is obviously the wise course of action; however, I don't think denying that some people go into "remission" where they completely stop having symptoms from gluten is helpful either.

[kareng]

OK now you want to hear my 21 year old side- gut, intestinal inflammation, etc. i don't really care to make sure all my grammar is perfect on a celiac website.

All I was trying to say is that it is very hard to read some of your posts and understand what you are trying to say. You are trying to explain things that can be quite complex and hard to understand, if written well. I think some of people's misunderstanding of your ideas about gluten intolerance could be because they were hard to read. Hard to tell when one idea ends and the next begins.

[Gemini]

Do some Googling. There are med schools that do a combined program of BA/BS MD, accepting kids out of high school. Most programs are 6-8 years. I can't really find any details on how they choose who to weed out over time, so it's a little curious.

It is, however, my expectation that anyone fully in the medical portion would be able to use capitalization, punctuation, grammar, and know the difference between their, they're, and there.

And someone professing to study the disease ought to know that it is celiac disease, not the plural form.

Thanks, Jestgar, for stating the obvious. Anyone with such poor writing skills could not possibly be in any medical school that would turn out an actual MD....not that an actual MD is much help in diagnosing Celiac Disease.

As far as anyone being able to totally recover from Celiac and eat gluten again, I don't think so. I would believe that if someone had a wheat allergy but full blown Celiac Disease is an entirely different animal. I have the utmost respect for Skylark as she seems to be one of the more intelligent posters to this forum and has always contributed valuable information but I just cannot agree with this notion of a Celiac recovering to that point. I went to the age of 46 before a diagnosis was made and my body was trashed by then. It took me 3 years to recover fully and now I have 4 autoimmune diseases from having gone so long without a diagnosis. My Sjogren's Syndrome has not improved that much and I suffer with it daily, even though I never cheat and am strict with my diet. So anyone contemplating eating gluten again...good luck with that. You will live to regret that decision, trust me.

[IrishHeart]

OK now you want to hear my 21 year old side- first of all its just a hypothesis and just because you say things are not possible doesn't mean they aren't. i never said to not eat gluten free i was seeing if its possible to heal and eat normally once again because I BELIEVE that celiac disease and gluten intolerance are two different things. i believe celiac disease is permanent and gluten intolerance is developed by leaky gut, intestinal inflammation, etc. i don't really care to make sure all my grammar is perfect on a celiac website. you can make fun of a 21 year old all day and night apparently but at least im trying to do something good with my life and I've studied my butt off in high school i had prom less nights so i could help people. but if my patients are all going to be like you, i think id do alot better changing my major to psychology because I'd lose my head. get off your butt and try to do something useful instead making fun of someone who is and maybe go to college for a semester and find out that wikipedia is NOT a reliable site.

Heidi, I think you keep missing my point for some reason and I have tried valiantly to make it clear. I thought you'd find the history of celiac of particular interest. Did you read it? No, you rudely dismissed it from the beginning and scoffed it.

Instead, you chose to focus on the fact it came from wiki. I explained over and over that those citations are valid. I provided other sources with the SAME information in case wiki was not a site you trust.

I also said that as an English Professor myself, I would not accept it as a valid research site alone, but if the information is cross-referenced in another publication, it's acceptable.

You made some major claims about research you have done and I encouraged you to write about it. I am not sure how that sincere suggestion was misinterpreted.

If you read carefully all that I have written, you would see I was trying to offer some information that you might find helpful and interesting.

Sorry if you are upset; but it does not help your case to say what you just said here. No one made fun of you; we suggested you express yourself more clearly so you are credible.

Some question that you are even in medical school, but if you look back earlier in the thread, you will see I have congratulated you for attending.

Skylark has graciously addressed the issue about the gluten intolerance spectrum, so I won't belabor it anymore.

As for the use of "text-speak", I BELIEVE it inappropriate for this forum. Many people --some from all over the world--are trying to learn and discuss topics on here and we need to communicate effectively. I do not care how old anyone is---it is NOT an effective means of communication. JMHO (Just making things light now because clearly, you are missing that part. Humor is not the same as "making fun".)

Best wishes with school. We need better doctors in this country for sure.

[heidi g.]

I am Just tired of being brought down. I'm just trying to see if it's possible... But i will give my props to Irish heart! I apologize, but i did check out your sources and i can see where your coming from. I guess in all this midst I am trying to just give myself hope that it can go away I just feel that everyone is different and has different opinions. I apologize for my horrible grammar and lazy punctuation and sorry for the attitude I have just had such a rough day! Life can be so stressful. Please, if you find anything new, send me the link or source. I apologize

[psawyer]

As for the use of "text-speak", I BELIEVE it inappropriate for this forum. Many people --some from all over the world--are trying to learn and discuss topics on here and we need to communicate effectively. I do not care how old anyone is---it is NOT an effective means of communication. JMHO (Just making things light now because clearly, you are missing that part. Humor is not the same as "making fun".)

Speaking as a moderator, what IrishHeart said here is very true. Not everybody speaks English as their first language. Many are struggling with the brain fog caused by gluten and are looking for answers. Many are older people who just aren't part of today's "text message" world. We grew up with snail-mail letters written on paper with a pen, and telephones that were wired into the wall and could only handle voice communications. Even at 57, I can grasp most textisms, but deliberately avoid them here. U can C Y if U R 4 clarity.

Edit: Heidi and I were both posting at the same time. I had not seen her post immediately preceding this one when I posted.

[heidi g.]

I apologize Kareng i went back and reread some of my things and i got confused as well and Im the one who wrote it! I don't wish to be one of those doctors who assume things. I want to be able to listen to everything a patient has to say. I have had some pretty rude doctors who rush, and i don't want to turn into them! Most everyone has good points. Honestly i don't even want to be in school for this i want to be a therapist. My father is a doctor so he just pushes me to do what he loves, and i get so frustrated. erggg sorry for venting

[Skylark]

I am Just tired of being brought down. I'm just trying to see if it's possible... But i will give my props to Irish heart! I apologize, but i did check out your sources and i can see where your coming from. I guess in all this midst I am trying to just give myself hope that it can go away I just feel that everyone is different and has different opinions. I apologize for my horrible grammar and lazy punctuation and sorry for the attitude I have just had such a rough day! Life can be so stressful. Please, if you find anything new, send me the link or source. I apologize

Apology accepted on my part! Your typing is so much easier to read this way. Life IS stressful, particularly school, and you'll find tremendous support on this board. We just like to be treated well, like everyone else.

Your celiac will probably not go away if you are positive for antibodies and villous atrophy, although I do believe that you are trying the right things. You might give that desensitization case study a glance, but if you try it in ten years, be ultra careful. You could make yourself very ill. Open Original Shared Link My wrecked thyroid is evidence that gluten is no joke. I had a childhood "wheat allergy", started eating wheat again as an adolescent, and didn't figure out it was making me sick until my mid 30s. By then, the damage was done.

What WILL happen for sure is that you will get used to the diet and wheat will gradually cease to even look like food. At this point, after six years gluten-free, the diet is complete habit and I don't even worry about it most of the time. You will be a great doctor for celiacs, because so many of us do not get any compassion from doctors who put us on the diet. You'll be appalled if you take the time to read people's stories around here.

[heidi g.]

I understand. See what i am confused about though is my antibodies were normal. I was reading earlier that several things can cause villi damage. Candida, leaky gut, and the gluten intolerance. Now, i read this on a few internet sites so i don't know if that's exactly true. Does anyone know of other causes of villi damage?

[kareng]

Hey Heidi!

I have an 18 yr old son I had to get on last year for the lack of clarity in his emails. He was team captain of a robotics team and got frustrated when no one knew what he meant & didn't follow his instruction. He now sends he mails in full sentences. Sometimes I don't know what his texts say. Usually they just want money or me to mail him something at college.

There are MDs that are therapists & psychiatrists. Maybe you could go that direction.

[psawyer]

Does anyone know of other causes of villi damage?

Damage to the villi can also be caused by:

Tropical sprue;

Giardiasis ("beaver fever");

exposure to high levels of radiation;

alcohol abuse.

However, the most common cause by far is celiac disease. The pathologist's examination of the biopsied tissue should identify the cause.

[heidi g.]

Haha it's okay! I like criticism! If i can speak proper English, i should be able to type it too! I would like to go into psychology. That's my field of interest

[heidi g.]

Hmm that's interesting. I should call my doctor as well and clarify with him what my biopsy exactly showed. All he told me was to try a gluten free diet. Not really a diagnosis o.O

[Skylark]

Hmm that's interesting. I should call my doctor as well and clarify with him what my biopsy exactly showed. All he told me was to try a gluten free diet. Not really a diagnosis o.O

If you feel better off gluten, the usual thing to get a definitive diagnosis is to repeat the biopsy in a year or two gluten-free. If the atrophy is gone you have strong evidence for seronegative celiac.

[heidi g.]

Well the thing is the only way i start feeling better is if my diet contains mostly of rice and steamed vegetables. I can't handle alot of other things. But maybe i just need time to heal before i can experiment with more gluten free foods. I have had my eye on gluten free chocolate cake mix i have found at the store.

[IrishHeart]

I am Just tired of being brought down. I'm just trying to see if it's possible... But i will give my props to Irish heart! I apologize, but i did check out your sources and i can see where your coming from. I guess in all this midst I am trying to just give myself hope that it can go away I just feel that everyone is different and has different opinions. I apologize for my horrible grammar and lazy punctuation and sorry for the attitude I have just had such a rough day! Life can be so stressful. Please, if you find anything new, send me the link or source. I apologize

It's okay, Heidi.

Life is indeed stressful at times.

Hon, if you are dealing with celiac, it is best for you to accept the diagnosis. It does not "go away", but it goes into remission on a gluten free diet--and that is good news! Please read about it and understand it as best you can, then live a long and healthy life.

Knowledge is power, kiddo!

Best wishes.

[IrishHeart]

Honestly i don't even want to be in school for this i want to be a therapist. My father is a doctor so he just pushes me to do what he loves, and i get so frustrated. erggg sorry for venting

Totally none of my business, but in my opinion, NO ONE should ever do what someone else wants them to do. It will only make you miserable.

Do what you love in life, kiddo! It's the only way to live.

You are an enthusiastic young woman. Have a good life!

[Jestgar]

Thank you Heidi. It's so much easier to follow you now.

[kareng]

Hmm that's interesting. I should call my doctor as well and clarify with him what my biopsy exactly showed. All he told me was to try a gluten free diet. Not really a diagnosis o.O

Sounds like you should get a copy of all your recent blood tests - celiac and other. You should get a copy of your pathology report from your endoscopy. And just for fun, a copy of the procedure report. Call and politely tell them what you need. Do not demand it today. The people who do that job get $1 over minimum wage. You can offer to pick it up and would 2 days from now be good? Or would they mail to you? If they give you any crap or want to charge you $25 for the copies, let me know ( pm me). I have a few tricks.

Actually, did you say your dad was a doc? If they give you nonsense, let him request the copies ( or , even better, one of the docs in his practice that has a different last name.) You will need to fill out a release of info form.

[heidi g.]

I will definitely do that. Is celiac disease an allergy to gluten? Because people can be allergic to strawberries and if you just don't eat them your fine. Wouldn't gluten be like the same thing?

[heidi g.]

question though- I have found some evidence to the claim that antibiotics can cause damaged villi. Here is one of the sites: Open Original Shared Link I just have a strong feeling that i don't have celiac disease. I just don't get why- Maybe im just too hopeful

[domesticactivist]

Heidi, I just want to say I'm sorry you got of to a rough start here but am glad that seems to be blowing over. I think aiming for healing leaky gut really is the way to go. If you decide to reintroduce gluten in a few years I'd encourage you to get tested regularly in case you are experiencing continued damage without feeling it.

As for other causes, I'm on my phone so I'm not checking sources but I do think I recall reading that soy can cause it and that there are a couple other rare conditions.

It is worth looking into, since of course if there is another condition you'd want that to be diagnosed. However, the biopsy is considered diagnostic of celiac.

I understand the need to believe you can get out of this diagnosis... I think that's the bargaining stage of grief talking. I do think there is a grieving process with a diagnosis like this. There is always hope for healing completely but I think it can be better to set a goal for feeling good and finding a new way to eat rather than an eventual return to the way you used to be able to eat. Actually, even a goal of eventual total healing will probably set you on that path to a new lifestyle and healthier diet that you may find you don't want to give up once you do feel great!

[Skylark]

I will definitely do that. Is celiac disease an allergy to gluten? Because people can be allergic to strawberries and if you just don't eat them your fine. Wouldn't gluten be like the same thing?

Absolutely not. It's a completely different immune response than allergy. Celiac disease is an autoimmune condition that is triggered by eating gluten. Get off gluten, and the autoimmunity resolves. It's the only autoimmune condition with a clear external trigger so it's being studied very carefully in the hope that it will give clues to other autoimmmune disorders. The villous atrophy is caused by T-lymphocytes that have been directed to attack the intestinal mucosa. Autoimmunity is not limited to the intestine; it can be in any tissue with transglutaminase. Some people get neurological autoimmunity resulting in peripheral neuropathy or ataxia, and some get skin autoimmunity, resulting in dermatitis herpetiformis.

A round of diarrhea from eating gluten is no fun, but the lingering neurological damage is what scares us all so badly. Your gut can heal easily. If you keep eating gluten and get nervous system problems, that's much harder to fix.

[ravenwoodglass]

I understand. See what i am confused about though is my antibodies were normal. I was reading earlier that several things can cause villi damage. Candida, leaky gut, and the gluten intolerance. Now, i read this on a few internet sites so i don't know if that's exactly true. Does anyone know of other causes of villi damage?

False negatives on blood tests are not uncommon especially if they only do a partial panel or have not checked to see if you are IGA deficient. There are quite a few of us who suffered for years and years and were repeatedly blood test negative and told we had IBS. Your lucky in that you were able to get an endo even with a negative blood test result. You can be celiac, and even close to death like I was, and still have negative blood tests. A strict trial of the diet is recommended even if both biopsy and blood are negative because testing misses so many of us. In the end the diet followed strictly will often give the answer.