So How Does This Work?

[samiam2]

I'm looking for a bit of advice on this issue.

My biopsy's were "borderline", I have no issues when i eat gluten, in any amount.

my only gastro issue, is acid reflux, which i didn't even know i had, my dr. told me i had a little bit going on.

so my body at this point isn't telling me anything is wrong.

my blood test however says my anti-body numbers are double what they should be.

(and I do have someone in my family with celiac disease)

I have accepted i'll need to go without gluten, and that I have celiac disease.

but to what degree?

considering that I have no symptoms and that my insides are "borderline"

then this must have just kicked in for me in the last 6-12 months (I'm guessing of course - but since i have no severe damage inside, it seems valid)

I'm not looking to eat gluten on a daily basis, but is it going to be a problem if say I have a burrito on fridays.

like once a week or something. or take my wife out to dinner once or twice a month and have a piece of pie or something.

what i'm unsure of, is lets say I'm gluten free for 98% of the time.

is eating 1 thing going to put me back to square 1.

Is it ok to indulge on occasion? or if i eat something with gluten does my insides get screwed again and it takes weeks to heal? or maybe will they just be agrivated for the day.. i'm not sure how much damage is inflicted when you eat any amount of gluten?

i know for some people they are very sensitive. but i don't appear to fall into this category.

so I'm thinking if i want to have something once a week (say for example a chipotle burrito) then i should be fine as long as for the rest of the week i was mostly or completely gluten free or am I understanding this wrong?

suggestions?

Thanks

[ravenwoodglass]

i know for some people they are very sensitive. but i don't appear to fall into this category.

so I'm thinking if i want to have something once a week (say for example a chipotle burrito) then i should be fine as long as for the rest of the week i was mostly or completely gluten free or am I understanding this wrong?

suggestions?

Thanks

No having gluten once a week is not okay. You are having an antibody reaction and doing this will keep the antibodies active and you risk having them attack other organs like your liver, brain, gallbladder, etc and will contribute to inflammation that can do a lot of damage. In addition you may find that once you have been gluten free for a bit the reactions you get are more severe. That is caused by a flood of antibodies in your bodies attempt to protect you.

Do check out restaurants that have gluten free menu items and go to those instead. It is becoming much more common for restaurants to have safe choices and if you check out the restaurant section of the board you may find some good ones that you have locally.

[IrishHeart]

Sam,

I think we already talked about this, but I see you are a bit confused about it,so here goes! You may be in a bit of shock over your diagnosis--many people go through this. There's denial and anger and bargaining (like, why can't I just have it once and while....) and kiddo, I know you are trying to absorb it all. I am the opposite, I was so sick and in so much pain I was GLAD to know what was happening to me.

Every time you eat gluten, whether it is a crumb or a burrito once a week or a dozen bagels, you continually damage the villi in your intestines and risk more autoimmune disease, cancer, and assorted problems you cannot imagine. Look at some of the things people have posted in their signatures. Dozens of horrible, crippling health issues. Mine are too long to even try to list!! YEARS of pain and illness because I did not know I had it.

YOU are actually lucky to KNOW you have this disease BEFORE you develop any more symptoms.

It's time to realize just because you are not doubled over in abdominal pain does not mean you are not damaging your intestines. Some people have NO symptoms whatsoever-- yet their villi are flat. This is called SILENT CELIAC.

By the question you have posed here, it is obvious you aren't seeing the danger of continuing to eat gluten-filled food...Plain and simply....NO AMOUNT OF GLUTEN IS OKAY WHEN YOU HAVE CELIAC.

Here's a condensed article for you, but you and your wife really need to read about celiac so you don't risk further illness. And you should have your children tested. PLEASE read it and know I tell you all this because I would not want you to have any of the pain and suffering so many of us have endured.

CELIAC DISEASE

Celiac disease (celiac disease) is also referred to as a gluten sensitive enteropathy (GSE), gluten intolerance, or celiac sprue. It is considered to be the most under-diagnosed common disease today, potentially affecting 1 in every 133 people in the USA. It is a chronic, inherited disease, and if untreated can ultimately lead to malnutrition. Gluten intolerance is the result of an immune-mediated response to the ingestion of gluten (from wheat, rye, and barley) that damages the small intestine. To learn more about the recently published multi-center prevalence study of celiac disease visit, www.celiaccenter.org.

Cause:

celiac disease is a 3-pronged fork:

1. you must inherit the gene,

2. consume gluten, and

3. have the gene triggered. Common triggers may include stress, physical trauma (surgeries, pregnancy, etc.), and viral infections.

Facts:

* Celiac disease was once thought of a rare childhood disease with only gastrointestinal (GI) symptoms. It is actually common, can occur at any age, and often presents as extra-intestinal.

* It was once mistakenly believed that one would "grow out" of the condition. In actuality, the disease is permanent and damage to the small intestine will occur every time you consume gluten, regardless if symptoms are present.

* Approximately 1 in 20 first-degree relatives of diagnosed celiacs could have celiac disease triggered in their lifetime.

Symptoms:

Most physicians recognize the classic symptoms of celiac disease : diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps. Physicians may not be aware that celiac disease frequently presents with other symptoms, some that do not involve the small intestine.

Signs that you could have celiac disease include:

* a first degree relative (parent, child, sibling) with celiac disease.

* a second degree relative (aunt, uncle, cousin) with celiac disease.

INTESTINAL SIGNS

* lactose intolerance

* excessive gas

* indigestion (dyspepsia)

* reflux (GERD)

* diarrhea

* constipation

* stearorrhea (oily or greasy stools)

* pale, foul-smelling, bulky stools

* abdominal pain

* abdominal distention/bloating

* irritable bowel syndrome (IBS)

EXTRA-INTESTINAL SIGNS-there are hundreds; these are most prevalent

* an inability to concentrate/fuzzy-minded

* bruise easily, bleed easily -including nose bleeds

* persistent itchy skin and/or rash

* mouth sores or cracks in the corners of the mouth

*dry mouth, burning tongue/mouth or dry eyes

* muscle cramping

* loss of muscle mass

* night blindness

* tooth enamel defects (discoloration, tooth enamel loss)

* lack the desire to eat; food tastes terrible

* vitamin deficiencies

* iron deficiency anemia, unexplained

* a decreased ability for blood to clot

* generalized weakness and extreme fatigue

* drastic weight loss OR inability to lose weight

* bone pain/joint pain

* easily fractured bones (osteoporosis, osteopenia)

* abnormal or impaired skin sensation (parasthesia)

* burning, prickling, itching or tingling skin

* unexplained edema

* short stature/growth retardation

* amenorrhea (missed menstrual periods)

* unable to conceive/impregnate

* multiple unexplained miscarriages

* multiple chemical sensitivity; allergies;other food intolerances

* chronic fatigue syndrome

* depression

* anxiety

No Symptoms - some people have mild celiac disease without noticeable symptoms.

Non-specific symptoms - some people get mild but unclear symptoms.

Diagnosis:

Blood tests

* Anti-tissue transglutaminase (tTG-IgA). This screening test is commonly used when an individual is in a risk group for celiac disease, whether or not he/she has symptoms. This test is usually the one offered for celiac screening events, as it is the most sensitive test available.

* Total Serum IgA to test for IgA deficiency (this health condition can affect accuracy of antibody test)

* Anti-endomysial antibody test (EMA-IgA). EMA-IgA are very specific for celiac disease but they are not as sensitive as the tTG-IgA. Some people with Type 1 Diabetes, Hashimoto’s thyroiditis and autoimmune liver conditions can have a falsely positive tissue transglutaminase test. For this reason, it is important that tTG test results in people with these conditions be checked with the EMA test.

*Genetic test: HLA-DQ2 and HLA-DQ8 gene tests for celiac disease. The “gene tests” are not antibodies. They can be used to exclude celiac disease (if negative) in doubtful cases.

*Small intestinal biopsy: A gastroenterologist takes small intestine tissue biopsies if the results of the antibody test(s) are positive or he/she has a strong suspicion of celiac disease. A biopsy showing damaged villi in the small intestine is the first half of the 'Gold Standard' to diagnosing celiac disease. The second half of the 'Gold Standard' is improvement of health with the gluten-free diet.

Treatment:

Strict adherence to a gluten-free diet for life is the only treatment currently available. This involves the elimination of wheat, rye, barley, and derivatives of these grains from your diet. Some people cannot tolerate oats. Medication is not normally required, unless there is an accompanying condition, e.g. osteoporosis, dermatitis herpetiformis, etc. Thriving, showing improvement and return of health on the gluten-free diet is the second half of the 'gold standard' of being diagnosed with celiac disease.

Prognosis:

Excellent, if you stay on the gluten-free diet. The small intestine will steadily heal and start absorbing the needed nutrients. You should start feeling better almost immediately; however, complete recovery may take several months to years.

Questions to ask your doctor:

* Should I take nutritional supplements?

* Could I have associated food intolerances?

* Where can I have a bone density study?

* What other concerns should I have?

* How can I find out about the diet?

Related Disorders:

People with celiac disease are at greater risk to develop other autoimmune disorders including:

* Addison' s disease

* autoimmune chronic active hepatitis

* primary biliary cirrhosis

* alopecia areata

* Graves' disease

* insulin-dependent diabetes mellitus (type 1)

* myasthenia gravis

* scleroderma

* Sjogren's syndrome

* lupus

* thyroid disease

*fibromyalgia

Thyroid disease and diabetes are the two most commonly associated diseases found with celiac disease.

Dermatitis herpetiformis (DH) is a skin manifestation of celiac disease. Some persons with DH also have a higher incidence of other skin conditions, such as eczema.

Other conditions frequently seen in persons with gluten intolerance include:

*anemia, asthma/ insomnia/ agitation/ Down syndrome/fertility problems

I ask you...is a burrito worth all that??

Didn't your doctor tell you that the only treatment for this disease is a strict gluten-free diet?? If not, you need a new doctor.

If you want to go out to eat with your wife, choose a restaurant with a gluten-free menu.

I wish you well--and a long, healthy, happy life --but that means NO GLUTEN...

[GFinDC]

The simple answer is "no" you can't eat gluten. Not once in a while, not every other month, not ever. Your body is going to pay you back for it if you do.

[samiam2]

I do appreciate the info. And I'm not trying to be pain here

My understanding is that this is a cumulative issuse and once off gluten, over time, your gut will heal.

given that I am without issue, if i eat no gluten and let my gut heal, i fail to understand how eating (just for the sake of example)

a burrito is going to send me over the edge for the rest of my life.

and If i'm wrong in my thinking (which I am OK with) I'd just like to understand the science behind this.

[ravenwoodglass]

I do appreciate the info. And I'm not trying to be pain here

My understanding is that this is a cumulative issuse and once off gluten, over time, your gut will heal.

given that I am without issue, if i eat no gluten and let my gut heal, i fail to understand how eating (just for the sake of example)

a burrito is going to send me over the edge for the rest of my life.

and If i'm wrong in my thinking (which I am OK with) I'd just like to understand the science behind this.

The science is the antibodies not the gut damage. Some celiacs have no gut damage at all, the skin form of the disease DH is an example of that. The antibodies can also attack the brain causeing mood issues like depression and anxiety. The stomach issues are only one of the issues involved in celiac disease the main issue is the antibody reaction. And once those antibodies are activated they remain actively coursing through the body for a while damaging many organs in the process. Using myself as an example I had DH from childhood and nervous system damage. I didn't get gut issues until I was in my thirties. But by that time I had suffered from depression and skin lesions for years and years. Before I was finally diagnosed my brain and nervous system was so damaged that it took many, many years to finally resolve but leaving me with some permanent brain damage. I have (had) a brother who also was likely celiac and in him the antibodies destroyed his liver. That was not realized until it was too late to do anything to help it. The antibodies can also attack the lympathic system resulting in lymphoma. While the diagnosis is daunting and it is hard to deal with having to be gluten free for life it is what we have to do.

[IrishHeart]

I sincerely suggest you read about celiac some more, Sam. Raven is telling you the facts---and you need to realize how the disease process can affect ALL the body systems.

I know it is difficult to fathom, given that you are not having serious symptoms right now, but you have to believe that even the tiniest amount of gluten provokes the antibodies. This is not like getting a cut and the scab heals over, falls off and you are all right. That's not how it works.

I could not make this stuff up... here is what happened to me...

Mine started as a teenager with a mysterious month-long illness, some heartburn and constipation....no big deal, right? yup, that's what I thought. Then, gall bladder disease that gave me horrid jaundice, gas, diarrhea, pain after eating. Had that removed.

Then, viral pneumonia for over a month. Multiple miscarriages over 5 years. (Sadly, I could not have any children)I developed Irritable bowel. Arthritis. Early menopause...migraines. Back and neck pain. Hip pain. That was all before I was 40. 2 years of horrible gynecological issues, insomnia, PAIN, so an early hysterectomy. (yes, all of these are associated with celiac)

I started having muscle pain, joint and bone pain (I was told fibromyalgia, arthritis, take this drug, take that drug) Nothing helped. More stomach pain, diarrhea, lost time from work.

3 years ago, I broke out into INEXPLICABLE BURNING NERVE PAIN and now, I suffer from chronic, unrelenting head to toe pain because my connective tissue, joints, ligaments and muscles were affected. In a short time,I lost major muscle mass and tone. A bag of potatoes is hard to lift. It's insane! I have trouble walking and laying down, sitting, standing. I am in constant motion all day long because my central nervous system has been impacted.Forget sleep--I have insomnia and when I do sleep, it is in fits and starts because of the pain. And because my gut is so ravaged, I CANNOT TAKE ANY PAIN MEDS.

I BURN all over from neuropathic pain--like a sunburn 24/7. It is agony. I had to stop going to the gym because even walking on the treadmill was painful. I have burning from my mouth, down my throat ...all the way down my digestive tract. I had to be picked up off the bathroom floor many times because I was exhausted from losing everything I ate down the toilet, one end or the other...and carried to bed by a loving husband who watched his wife dwindle down to nothing. I lost 90 lbs. rapidly. I went from being an active, happy, vivacious woman who swam, gardened, danced and traveled....to being unable to breath, walk or dress myself. My neck and jaw pain is so bad, it hurts just to lay my cheek against a pillow. My hair fell out. At one point, I could barely comprehend what I was reading or articulate clearly. (I used to read 3 books at a time and I was an English Prof.) I developed raging anxiety and had to hold onto my husband's arm when I went anywhere. (I have never been shy in my life!) I was lost in space. It felt surreal. I would walk into a room and forget why I went in there. I forgot how to make dinner. I walked sideways and bruised myself on everything. I would cry to my husband,"what the hell is wrong with me??" I thought I was dying I could barely function, eat, or sleep. I am so exhausted I drag myself around all day, trying to live as normally as possible. There is nothing normal about my life right now. I even had to stop driving because I couldn't focus enough to be safe. I was in so much pain I thought I'd rather die than live like this. We spent THOUSANDS of dollars going from doctor to doctor, pain treatments, anything to get me well. None of it worked. I tried a naturopathic doctor, a functional Med dr. and therapies of all kinds...Three years of my life totally lost in a haze.... because I still did not know what was the CAUSE. Doctors, specialists... shook their heads at me, told me it was stress. STRESS!!?? .

I researched endlessly as best as my muddled brain could.....diagnosed myself, brought it back to my doctor, had it confirmed and the rest is history. I went gluten-free on Jan. 1 and things have slowly started to improve, but it will take me a long time. My physical therapist says maybe a year, maybe longer.

I had a lifetime of poor health and now, it all makes sense.

There's so much more I could tell you, the toll this took on my patient husband and my family who thought I was dying, but Sam...my point is I did not think anything about the occasional digestion problems either....I took the zantac or whatever the doctor gave me and just kept eating and drinking whatever I wanted. But I kept going back to the doctors because I always felt so crappy and did not know why.

I keep having blood work and tests run to make sure I am okay now. I am so tired and in pain and I cannot sit here much longer because it hurts. I only wrote all this to you because every time someone ask this same question, "Is it okay to eat just a little?" I feel compelled to tell my story as an example--just like Raven's--so you can see what happens to the WHOLE body--not just the gut---when the autoimmune response is provoked.

I live in hell right now. My biggest hope is that I will recover somewhat so I can live normally again. And to do that, I have to heal from a body nearly destroyed by gluten.

and I imagine you are saying to yourself.... yeah, but that's YOU lady, that's not going to happen to me.

I don't know, Sam. I never in my wildest dreams ever expected it to happen to me either....but here I am. None of us on here did.

You have been given the opportunity to prevent this kind of cascade. It is a gift. I hope you do what you need to do to stay well.

I'll stop now. Nobody likes a "nag"...

[GFinDC]

I do appreciate the info. And I'm not trying to be pain here

My understanding is that this is a cumulative issuse and once off gluten, over time, your gut will heal.

given that I am without issue, if i eat no gluten and let my gut heal, i fail to understand how eating (just for the sake of example)

a burrito is going to send me over the edge for the rest of my life.

and If i'm wrong in my thinking (which I am OK with) I'd just like to understand the science behind this.

No problem, it's fine to ask questions! I didn't think eating toast out of an old gluteney toaster would hurt me. I thot the people on this site were exaggerating big time. But after a couple weeks when I ate some gluten-free toast I made in that toaster, I sure felt it.

Your body learns to make antibodies to various bad things, germs, parasites etc. In autoimmune diseases it learns to make antibodies to itself. Every time you eat gluten it kicks off the immune reaction and your body makes more antibodies that start attacking your body. You won't die from eating gluten right away. But over time the constant antibody attack takes a toal. If you do a search on celiac associated condition, or related condition you can find lists for the other autoimmune disease people with celiac tend to develop. not fun stuff. If you never get your antibodies down because you are constantly sneaking gluten then you are constantly being damaged.

[samiam2]

I appreciate the extra info and time put in to give it.

Thanks!

[tarnalberry]

The celiac reaction in the gut can self-sustain itself for two weeks. So, if you eat gluten every other week, you are *never* without antibodies in your intestines - doing the damage they do on your intestines or on other parts of your body if they get into the blood stream. Either way, they tax the immune system and create a lot of chemical stress on your body. Do you always want to be trying to heal from damage, rather than being healthy?

(A comparison - it takes about 8 weeks to heal a broken leg. So, you could go break your leg every 8 weeks. But does that leave your body in a good place?)

[samiam2]

@tarnalberry thanks for the info, that's kind of what i was after.

This may be a silly follow up question.

but i was wondering.

If the anti-bodies are bad, then why does the test say you are normal if you are under 19.

my dr. said you need to be under 19, but i was @ 39

so is it ANY are bad, or just as long as they are under a certain amount?

this is simply for understanding sake, I'm not trying to see if i can eat a small amount of gluten

thanks

[IrishHeart]

Sam...

I expect your doctor has you scheduled for a re-test on those antibodies?

At my worst, I cried to my sister, who --with my husband--was ready to take me to the Mayo clinic..."I feel as if someone is slowly killing me by poisoning me"....in a sense, I WAS being poisoned.

Now, I look at gluten as "slow rat poison"...is a little bit of rat poison okay? nope!!

Okay,now I promise, I am really done "convincing you" to give up gluten entirely... :D

I just want you--and your children--to have healthy lives.

[adab8ca]

IrishHeart

I am jsut sending you big huge hugs. I KNOW this neuro burning pain and I thought I had it bad, I cannot even imagine...I am so sorry that you are going through this and sincerely send ALL my best wishes that the gluten-free starts working FAST. I have been gluten-free for almost 7 months and have seen some improvement in the neuropathy and definitely the sleeping but it has been slow.

[IrishHeart]

IrishHeart

I am jsut sending you big huge hugs. I KNOW this neuro burning pain and I thought I had it bad, I cannot even imagine...I am so sorry that you are going through this and sincerely send ALL my best wishes that the gluten-free starts working FAST. I have been gluten-free for almost 7 months and have seen some improvement in the neuropathy and definitely the sleeping but it has been slow.

oh...thank you so much! I appreciate the hug! I am extremely hopeful, although some days, it is pretty bad....I have a very supportive husband, so, I never give up I have seen some improvements--obviously I can "talk" again LOL---and I am not so spacey or living in the bathroom...these are all good signs...! thank you for your sweet message!

[samiam2]

Sam...

I expect your doctor has you scheduled for a re-test on those antibodies?

At my worst, I cried to my sister, who --with my husband--was ready to take me to the Mayo clinic..."I feel as if someone is slowly killing me by poisoning me"....in a sense, I WAS being poisoned.

Now, I look at gluten as "slow rat poison"...is a little bit of rat poison okay? nope!!

Okay,now I promise, I am really done "convincing you" to give up gluten entirely... :D

I just want you--and your children--to have healthy lives.

I have a follow up visit, I'm not sure if he is going to re-test me or not.

I guess i need to ask about periodic testing to ensure compliance.

I believe i said i wasn't trying to eat small amounts of gluten.

I am just the type of person who needs to know every detail about something.

I'm not crazy OCD, but I'am a "need to know" person.

i grew up hearing "because i said so" and as an adult I refuse to accept that, so I need lots and lots of specifics for me to be okay with something.

I appreciate you wanting me and my family to be healthy. I do as well!

I am slowly coming to terms with this, but that doesn't make it suck any less

[ravenwoodglass]

I have a follow up visit, I'm not sure if he is going to re-test me or not.

I guess i need to ask about periodic testing to ensure compliance.

Many doctors will retest every six months or so to see if your levels are dropping. Most folks do not get to a point where the number is zero but if you are compliant with the diet you should get to the point where they are under the positive level.

[IrishHeart]

I have a follow up visit, I'm not sure if he is going to re-test me or not.

I guess i need to ask about periodic testing to ensure compliance.

I believe i said i wasn't trying to eat small amounts of gluten.

I am just the type of person who needs to know every detail about something.

I'm not crazy OCD, but I'am a "need to know" person.

i grew up hearing "because i said so" and as an adult I refuse to accept that, so I need lots and lots of specifics for me to be okay with something.

I appreciate you wanting me and my family to be healthy. I do as well!

I am slowly coming to terms with this, but that doesn't make it suck any less

man, do I hear ya! I am not a "crazy OCD" person either, but I was PERSISTENT in getting to the bottom of my health problems, and wanting DEFINITIVE ANSWERS, so I totally get your point. I do not blame you one bit! It's being PROACTIVE about your health-- it is commendable.

It does suck. And you will come to a place of acceptance. Give yourself some time. It's a big change. We really do "get it" and we hope you'll continue to come on here for advice, support and to tell us how you are doing!!

[Jestgar]

If the anti-bodies are bad, then why does the test say you are normal if you are under 19.

my dr. said you need to be under 19, but i was @ 39

so is it ANY are bad, or just as long as they are under a certain amount?

this is simply for understanding sake, I'm not trying to see if i can eat a small amount of gluten

thanks

The ELISA test is sigmoidal

Anything below the middle straight line, on the lower flat part, is not able to be interpreted, so if the straight part starts at 19, anything less than 19 is the same as zero for the purposes of the test. (Anything above the straight line on the upper flat line is also uninterpretable and should be reported as >100 or whatever the top value on the straight line is).

So 'under 19' might be (as close as you can get to) zero, or at least on it's way down.

ETA I put in a smaller graph that's a little less descriptive, but doesn't stretch the page.

[samiam2]

@jestgar thanks for the explanation, that makes sense.

@IrishHeart - The problem that i'm going to have, other than the diet of course, is right now, nothing is really wrong with me.

I'm healthy, have good energy, no real issues that i know of.

I do understand that given time, i probably would have issues. but unlike many of you, i'm probably not going to see any improvements

I realize i probably should look at that as a good thing, but i have heard dozens of times, "oh but you'll feel so much better"

and i don't mean it like my situation is tough, i mean it like, mentally it will be tough to tell myself i'm doing the best thing because right now nothing is wrong

makes sense?

but i am the type who does adapt quickly. so i will complain about it a whole bunch, but i'm already with the program and doing my homework to ensure i cut out gluten.

[Jestgar]

... so i will complain about it a whole bunch, ...

:lol: You'll fit right in then.

[love2travel]

@jestgar thanks for the explanation, that makes sense.

@IrishHeart - The problem that i'm going to have, other than the diet of course, is right now, nothing is really wrong with me.

I'm healthy, have good energy, no real issues that i know of.

I do understand that given time, i probably would have issues. but unlike many of you, i'm probably not going to see any improvements

I realize i probably should look at that as a good thing, but i have heard dozens of times, "oh but you'll feel so much better"

and i don't mean it like my situation is tough, i mean it like, mentally it will be tough to tell myself i'm doing the best thing because right now nothing is wrong

makes sense?

but i am the type who does adapt quickly. so i will complain about it a whole bunch, but i'm already with the program and doing my homework to ensure i cut out gluten.

Same here! No symptoms so I must keep telling myself it is for my own good for my future health, although it is extremely hard to be motivated to go gluten-free when you feel good (and when you love food!). As I've mentioned a whole bunch of times (sorry!) I keep questioning my diagnosis as I feel so good (other than a back injury) even though I know I do have celiac. People seem to need incentive to do something and if there is none, it's very challenging.

If I see some fabulous gluten-filled food in a restaurant, for example, I feel like reaching for it because I know I won't feel any worse if I ate it. However, I cannot let myself go any less than 100% - it's all or nothing so if you don't go all the way why even bother? My sister's FIL has celiac but cheats often. He's in his 70s, a silent celiac and is healthy, fit and energetic - more fit than many 40-year olds.

Just hang in there. Imagine your little villi standing straight and strong.

[IrishHeart]

@jestgar thanks for the explanation, that makes sense.

@IrishHeart - The problem that i'm going to have, other than the diet of course, is right now, nothing is really wrong with me.

I'm healthy, have good energy, no real issues that i know of.

I do understand that given time, i probably would have issues. but unlike many of you, i'm probably not going to see any improvements

I realize i probably should look at that as a good thing, but i have heard dozens of times, "oh but you'll feel so much better"

and i don't mean it like my situation is tough, i mean it like, mentally it will be tough to tell myself i'm doing the best thing because right now nothing is wrong

makes sense?

but i am the type who does adapt quickly. so i will complain about it a whole bunch, but i'm already with the program and doing my homework to ensure i cut out gluten.

MAKES PERFECT SENSE!!

YUP, complain away...we do it all the time.I did it just five minutes ago...LOL LOL

Sam, I was just about to tell you that you should talk with "love2travel" because she has no symptoms either....and here she is, already replying!! You know, there was another gal on here yesterday with silent celiac, too and she was really bumming about it because she was "perfectly fine" until her doctor told her she had celiac. Now, 5 months later, following a strict gluten-free diet, she doesn 't notice anything because there was nothing to compare it to!!

so...perhaps these two understand even more so the difficulty when there is no "barometer" that tells you that you are making "improvements" when you didn't feel they needed to be made in the first place. Sort of like, "if it ain't broke, why the heck am I fixing it??"

If only you could see the villi...

Guess the best way to think is: those villi are replenishing and GUARANTEEING you a more healthy life. You've been given a chance to prevent trouble and that is the gift. (Even if it doesn't feel like one right now)

It's funny, but if someone had told me 30 years ago when I still felt fine that I had this disease and I had to give up gluten, I'd have said "Are you freakin kidding me? I'm not doing that..." Today, if there was a time machine and I could go back, I would do it without hesitation. My life would have been drastically different.

So, yeah, I definitely see your dilemma and so, I admire all of you WITHOUT symptoms all the more for doing what you gotta do. I look for any little improvement every day, but you guys have to go on faith--and test results-- to know it's working. That's not easy.

You're gonna do fine, Sam Best wishes, kiddo!

[MsCurious]

I have a follow up visit, I'm not sure if he is going to re-test me or not.

I guess i need to ask about periodic testing to ensure compliance.

I believe i said i wasn't trying to eat small amounts of gluten.

I am just the type of person who needs to know every detail about something.

I'm not crazy OCD, but I'am a "need to know" person.

i grew up hearing "because i said so" and as an adult I refuse to accept that, so I need lots and lots of specifics for me to be okay with something.

I appreciate you wanting me and my family to be healthy. I do as well!

I am slowly coming to terms with this, but that doesn't make it suck any less

If it makes you feel any better, people have posted on here that they don't give up anything. They have stuffing and gravy at Thanksgiving, and pumpkin pie, and birthday cake on their birthday, and waffles for breakfast, etc... So, just think of it that way... you don't have to give up everything, you just have to learn how to cook differently... with different flour. They say eating a crouton will put you in a tailspin, as far as undoing months of healing... to put it into perspective, so nope you can't cheat! But if you feel like you need support, there are wonderful people here who will remind you why you're gluten free. Good luck and be well!