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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Does A Gluten Free Diet Actually Cure Celiacs Disease?
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18 posts in this topic

Allow me to introduce myself. My name is Jerick and I was diagnosed with celiacs disease when I was 16yrs old ( I am currently 22 - Also I haven't seen a digestive dr, or gastrologist in 5 years for follow up for my celiac condition. However I have decided to take control of my health and have scheduled an appointment at a local digestive disease dr in the area).

I haven't been dedicated to my diet and therefore my health has taken a poor turn. I've gained and lost a great deal of weight, I suffer from depression and constipation. In the past I have followed my dietary restrictions by not eating wheat but I haven't been as careful with cross-contamination and hidden gluten ingredients.

I have decided to research my disease and see what steps are necessary for hopefully curing my intestine and living a long life. However since I've taken the time to study up on my condition I have been met with nothing but uncertainty and fear. My question today has to do with an article from chicago medical center for celiacs disease found here. I am particularly upset by the following statement; " While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal."

From what I understand and have read from various sources celiac's can heal by adhering to a gluten free lifestyle. However studies still show that 60% of people never completely heal therefore the leaky gut condition, and inflammation is still prevalent leading to early death and other autoimmune disorders. So does this mean that the gluten free diet isn't working? Is there anything else that could be done to cure my condition?

The Select Carbohydrate diet states that our bodies are unable to due to the ingredients found in "gluten free foods" based on Corn, Rice, and Tapioca. The listed ingredients are harder for the body to break down therefore causing bacteria to grow which causes the intestines to inflame, leading to negative consequences in Celiacs.

I am writing to everyone today in hopes there is anyone or group of individuals that could help clarify and lend some advice as to how I should approach a gluten free diet. I feel so pulled and frustrated I would just like some peace of mind.

I am willing to adhere to the SCD lifestyle diet however I do not have the funds to purchase all the food processors and blenders necessary.

Thank you for your time!

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First - you hardly qualify as an "older adult". :D

Second - It does say when adherence to the diet is not followed

Go to the GI. Maybe get another endoscopy to see where you are. Follow a strict gluten-free diet. That is the only "cure". You could get a repeat endoscopy in 2 years and see if you healed.

The other thing is that you really aren't cured. You will still have Celiac, even if your intestines have healed. You cannot go back to eating gluten after healed. You will just get a damaged intestine again.

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I agree with Karen regarding seeing a GI doctor right away and getting serious about your gluten-free diet.

You should understand that Celiac, which is an autoimmune disease, means there is no "cure" (you will always have celiac disease), but there is a treatment (the strict gluten-free diet) which will put the symptoms into remission.

You feel lousy because you are not following the diet, hon --and risking serious complications.

You do not necessarily need to follow the SCD diet to adhere to a safe gluten-free diet.

Just follow a gluten-free diet, which includes NO RYE, BARLEY or any wheat derivatives. Oats MUST BE certified gluten-free. I notice you said you just avoid wheat.

You need some guidance from a GI doctor, some follow up blood work and a better understanding of what a true gluten-free diet is.

You are in the right place!

I suggest you learn about cross contamination and hidden sources of gluten so you can see what steps you need to take.

All this information is in this thread:

I hope this will help you get started. Best wishes!

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Allow me to introduce myself. My name is Jerick and I was diagnosed with celiacs disease when I was 16yrs old ( I am currently 22 - Also I haven't seen a digestive dr, or gastrologist in 5 years for follow up for my celiac condition. However I have decided to take control of my health and have scheduled an appointment at a local digestive disease dr in the area).

I haven't been dedicated to my diet and therefore my health has taken a poor turn. I've gained and lost a great deal of weight, I suffer from depression and constipation. In the past I have followed my dietary restrictions by not eating wheat but I haven't been as careful with cross-contamination and hidden gluten ingredients.

I have decided to research my disease and see what steps are necessary for hopefully curing my intestine and living a long life. However since I've taken the time to study up on my condition I have been met with nothing but uncertainty and fear. My question today has to do with an article from chicago medical center for celiacs disease found here. I am particularly upset by the following statement; " While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal."

From what I understand and have read from various sources celiac's can heal by adhering to a gluten free lifestyle. However studies still show that 60% of people never completely heal therefore the leaky gut condition, and inflammation is still prevalent leading to early death and other autoimmune disorders. So does this mean that the gluten free diet isn't working? Is there anything else that could be done to cure my condition?

The Select Carbohydrate diet states that our bodies are unable to due to the ingredients found in "gluten free foods" based on Corn, Rice, and Tapioca. The listed ingredients are harder for the body to break down therefore causing bacteria to grow which causes the intestines to inflame, leading to negative consequences in Celiacs.

I am writing to everyone today in hopes there is anyone or group of individuals that could help clarify and lend some advice as to how I should approach a gluten free diet. I feel so pulled and frustrated I would just like some peace of mind.

I am willing to adhere to the SCD lifestyle diet however I do not have the funds to purchase all the food processors and blenders necessary.

Thank you for your time!

In my opinion, there are too many factors for one to say "just eat a 100% gluten free diet and you will be fine". New studies have shown that corn gluten is absolutely unsafe for gluten sensitive people. Two years ago, i went "gluten-free". Fast forward to the present, i still have many food intolerances, most likely linked to having a leaky gut. And along with my leaky gut, i have an overgrowth of candida. I've been where you are at, looking to this forum for a simple answer. But here lately i've realized there is no simple answer because everyone's situation is different. I've noticed a lot of people with celiac disease will not accept that the studies on this disease are still evolving, and they continue to eat nothing but processed "gluten-free" foods on a daily basis. Ignorance is bliss, and i especially can vouch for that. I lived it.

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The corn question is far from absolute. I have been diagnosed for 12 years, and have been eating corn for all that time. I have been retested via biopsy, and found to have normal, undamaged villi. If corn is the same as other gluten, how did I possibly heal? Why am I still very healthy, and symptom-free, after 12 years of eating gluten-free, but consuming corn and rice?

Some people with celiac disease are also intolerant to corn (and other foods), but I seem to prove that this is not universal.

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First of all, neither Karen nor I suggested "nothing but processed gluten free foods on a daily basis".

In fact, I often suggest a whole foods diet to people, until they learn what they can and cannot tolerate.

Your leaky gut, candida overgrowth and other food intolerances are not necessarily what the OP is dealing with.

And not every celiac has issues with corn.

Corn gluten is not harmful to celiacs ---as far as we know.

You are correct in that we do not know all there is to know about this disease process and recovery, but the majority of celiacs do just fine still consuming grains.

This young man has not even followed a true gluten free diet yet, so he has not even begun to heal.

A visit to the GI doctor will reveal what is happening in his gut. He can have a test for SIBO (small intestine bacterial overgrowth) after he finds out if his gut if even healing.

Let's not get him worried about candida or other food intolerances until he knows where he stands.

He's already pretty worried right now.

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First of all, neither Karen nor I suggested "nothing but processed gluten free foods on a daily basis".

I did not mention Karen or you at all.

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The corn question is far from absolute. I have been diagnosed for 12 years, and have been eating corn for all that time. I have been retested via biopsy, and found to have normal, undamaged villi. If corn is the same as other gluten, how did I possibly heal? Why am I still very healthy, and symptom-free, after 12 years of eating gluten-free, but consuming corn and rice?

Some people with celiac disease are also intolerant to corn (and other foods), but I seem to prove that this is not universal.

I stand corrected. Thank you.

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Thank you all for your input and advise. I will wait for further diagnosis. I've decided to go ahead and just stick to a gluten free/SCD. I just hope I haven't caused too much damage. I am pretty ashamed of my lack of knowledge and general care for my health. I have begun to taking L-glutamine for villi health, probiotics as an anti-inflammatory, and a daily vitamin supplement to cover the rest of my bases

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Welcome!

No need to be so hard on yourself - you have acknowledged the need to learn about Celiac Disease and are now dedicated to living gluten-free. While this disease can make anyone feel much older than they are, you are still a very young adult. To me, it sounds like you are set to succeed, heal and start feeling young again.

Happy healing to you :)

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I did not mention Karen or you at all.

Nope, you didn't--you were very general, but since we both had just said "follow a strict gluten free diet" because he admitted he hadn't been--I just wanted it to be clear.

It's all good. :)

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Thank you all for your input and advise. I will wait for further diagnosis. I've decided to go ahead and just stick to a gluten free/SCD. I just hope I haven't caused too much damage. I am pretty ashamed of my lack of knowledge and general care for my health. I have begun to taking L-glutamine for villi health, probiotics as an anti-inflammatory, and a daily vitamin supplement to cover the rest of my bases

You're doing all you can, hon! Get yourself a celiac-savvy GI to help you with proper care. Sounds like you're on the right path.

Best wishes, welcome to the forum and I hope you start to feel better soon!

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While this disease can make anyone feel much older than they are,

true, true.

oh man, sometimes I have felt 103..... and other days, my perky self of 22 (in my head anyway....) :lol:

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@Richterface,

Well neat, I have a neighbor named Richter. He is in the Coat Guard though and older.

It's good you are taking the gluten-free diet and celiac disease seriously now. The damage builds up over time and can suddenly become much worse also. Sometimes people develop other autoimmune disease if they go untreated. But you can avoid all that by sticking to the gluten-free diet. Can you cook your own food? That is a big help in avoiding gluten. Eating out in restraunts is risky. Cooking your own whole foods is a big help in avoiding gluten. It doesn't have to be fancy food, simple whole foods are safer and are good tasting too. I added a bunch of links below that may help you get started.

@BridgeofSighs,

HI,

Corn is definitely a problem for some of us. The whole leaky gut thing does tend to cause various food intolerances in people. There is quite a range of food intolerances among the forum posters. Nightshades, corn, eggs, sals, soy, oats, grapes, carrots and some others too. Basically we can become intolerant to any food. corn doesn't bother me except for corn on the cob, but ground or flour is fine. BuI I have plenty of other intolerances to make up for corn. :) I hope you are feeling better and doing well with your diet. This is all a learning process for us.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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Hey! Let's not overwhelm the poor guy (?) with all the foods that he could, maybe, find a problem with. Let's get him started being gluten-free for a few months,first! Then, if he is still having problems, go for it! :)

cm

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true, true.

oh man, sometimes I have felt 103..... and other days, my perky self of 22 (in my head anyway....) :lol:

Amazing the difference - I've felt over 90 more often then my real age throughout my 30s and 40s - but felt better than I did at 18 for eight whole months last year....gotta get that magic back - never knew how sick I'd been my entire life before I had that window of health - 'tis amazing what a body can tolerate before causing a real fuss ;)

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The corn question is far from absolute. I have been diagnosed for 12 years, and have been eating corn for all that time. I have been retested via biopsy, and found to have normal, undamaged villi. If corn is the same as other gluten, how did I possibly heal? Why am I still very healthy, and symptom-free, after 12 years of eating gluten-free, but consuming corn and rice?

Some people with celiac disease are also intolerant to corn (and other foods), but I seem to prove that this is not universal.

You should take note that being intolerant of corn or rice is different to gluten intolerance, celiac disease. You seem to be on the right track.

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You should take note that being intolerant of corn or rice is different to gluten intolerance, celiac disease. You seem to be on the right track.

I think he was 'taking note" of that

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    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
    • Nature's Bounty Protein & Vitamin Shake Mix
      Sort of funny.  Says no wheat at the bottom but also says this " Other Ingredients: Proprietary Protein Blend (Soy Protein Isolate, Whey Protein Concentrate), Cocoa (processed with alkali), Inulin, Oat Fiber, Fructose, Natural Flavors, Maltodextrin, Soy Lecithin, Tricalcium Phosphate, Xanthan Gum. Contains milk and soy ingredients. Contains wheat ingredients.   I bet they do not use gluten free oats, so its a bit of a gamble.  Not one a Celiac should take as there is no such thing as "not severe Celiac".  Even if you don't feel the damage, consuming gluten will start damaging you.  Maybe its just catching up with you.
    • celiac disease is psychosomatic
      I am assuming United States- It has been a long time since I studied health info law, but I doubt this part has changed.  A doctor would not change the record just because you said its wrong.  They might make a correction if they remembered or had actual facts (like a lab test read incorrectly or appearing later).  What you are allowed to do is write a letter to be included in the record.  You need to put in larger letters at the top, something like "This note must be included with any release of information from my medical record".   I am not sure how it is handled with electronic releases these days.  You could contact a medical records department (ask for the release of info section)  at a large hospital near you and ask how they handle it.  Be nice and tell them it isn't a problem with their facility but you know they are the experts.  I would urge you to make the note short and not nit pick.  State the big basic facts that you don't agree with and don't worry about the little things.  People will not read a really long note or it will make you look crazy (in a bad way  )   And for the apt with your neurologist.  Don't bring it up, see what he/she says first.  Half the time they don't read all the little details or even receive more than a brief - tests run & results and maybe a brief summary.  You might be surprised, your doc might think the person is a bit of a jerk, but hoped you might mesh with them. I recently had my doc agree with me when I said I couldn't stand another doc that had been in her practice.  lol
    • celiac disease is psychosomatic
      I called this doctor's office again to inquire if my medical records have been corrected. When I called to amend my records because there was inaccurate information, the staff member told me that I need to write my complaint in email to doctor. So, that's  what I did. The doctor wrote things I said that I didn't say, which changed the meaning of what I said so I wanted to correct that. I talked to a different staff member today who irritated me in the past by saying things she was going to do which she never did. Her tone of voice is condescending and argumentative like she refuses to help you or that's probably what makes me feel irate. Today she said the doctor wasn't going to commit fraud by writing something I told her to write. I don't feel irate when I talk to the other staff member who answers the phone. Anyway, this staff member said she printed my email for the doctor to read, and she'll reply when she wants to reply (never). I said that it's not the doctor's choice to choose whether or not to correct inaccurate information in medical records. I said I think by law, it must be done so if the doctor continues to ignore my request to correct inaccurate information, then I should probably file a medical complaint somewhere. Finally, the doctor called me back. She asked what was inaccurate when I said I wanted to correct the incorrect information. Then, I asked if she read my email. She said she did not have time to read patient STORIES. I said a good doctor would make the time to read a request to correct inaccurate information in a patient's medical record. Then, she said I'm sick to keep writing letters to her. I said I only wrote one email to her and it was because a staff member said that is how to amend the inaccurate information. She added that if I really had physical symptoms, I would not have been able to get a college degree or write letters to her. Although I explained to her during my consult that I took online classes and did homework in bed with lots of breaks, she thinks I must be pretending to have symptoms. I also explained during my consult that half of my dizziness and migraines are gone since being on a gluten-free diet. Yes, this makes sense why her office makes me feel so irate! I ended the call by asking if she was going to correct the inaccurate in my medical records. She kept rambling on how only sick people keep writing letters to doctor. Again, I told her I only wrtote one email to her and that's because her staff member told me to correct inaccurate information in record. The staff member recommended this instead of filling out a record amendment form, which I don't think they have. She said file a complaint like it was a joke. Since my neurologist referred me to her when I inquired about help for my memory problems, I'm afraid she will tell him negative things about me. Her office is just across the hall from his. Doctors are more likely to take the word of another doctor over a patient. In contrast to this doctor, my neurologist is a real competent doctor. Do you ever think that sometimes doctors are crazy, but they get away with making others think it's the patient who is crazy because they are more powerful? This doctor is a neuropsychiatrist. I will never see a neuropsychiatrist again due to this bad experience.  My appointment with the neurologist is in another week. I don't know if I should briefly mention my bad experience with this doctor so he won't believe her if she tells him that I am faking my symptoms. It would be like I was faking my whole life if I was faking my symptoms. Maybe I could say something like the brain testing wasn't very helpful with that doctor since she assumed my symptoms were all in my head  because I graduate from high school and obtained a college degree in the past. I also told her during my consult that I received average grades in high school because I often went straight to bed after school not having chance to do homework. This feels like abuse or abuse of power from the doctor. I wish I recorded the phone conversation with this doctor calling me names.
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