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How Much Gluten Is Going To Set Me Back?
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So I have a kind of unique situation, but I guess everybody does, to a certain extent.  I was totally asymptomatic when I was diagnosed with Celiac Disease about two months ago.  I was skeptical at first, but, to my doctor's urging, I started a gluten-free diet.  I've been on the diet for about a month.  It's definitely been difficult at times to feel like I am missing out on so many delicious things, and causing so much hassle for the friends, family and restaurants that I eat out at, especially when I know that I could simply forgo the gluten-free diet for a day and and not suffer for it.

 

Day to day, I'm not terribly careful about cross-contamination (I share a kitchen with gluten-eaters, I eat oats, and generally use the rule that, as long as the food label does not have any identifiable gluten-related ingredients, it's good to go).  On one particular occasion, when I had friends in town, I decided to test my gluten reaction, and went all out on a brewery tour, drinking gluten beers, and eating everything I could think of that had gluten in it.  Even though I had only been on the gluten-free diet for a month, it was such a heavenly release to feel and eat like a normal person again.  The next day I was a little bloated and gassy, but it was only a minor discomfort and well worth the previous day's deliciousness. 

 

So what is my question?  If I don't suffer physical symptoms from the gluten, is it okay for me to occassionally lapse like I did on my gluten weekend?  I am fully aware of the risk of continuing to eat gluten as a person with Celiac's Disease.  I know that there is an increased risk of intestinal cancer and other complications later in life.  That's why I decided to begin the gluten free diet.  Thus, does relapsing like this once every month or so reverse all of the healing that my intestine has done to this point and bring me back to square one?  I would hate to eat gluten for one day of bliss and erase an entire month of gluten free eating and healing.  Likewise, even if I don't feel symptoms from cross-contamination, is there a chance that even trace amounts of gluten are getting into my food and causing a reaction in my intestines, thus reversing the healing that I have been working so hard to promote?

 

I would appreciate any insight you my have on the biology of a healing intestine, or any similar experience you could share.  Thanks!

 

 

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So I have a kind of unique situation, but I guess everybody does, to a certain extent.  I was totally asymptomatic when I was diagnosed with Celiac Disease about two months ago.  I was skeptical at first, but, to my doctor's urging, I started a gluten-free diet.  I've been on the diet for about a month.  It's definitely been difficult at times to feel like I am missing out on so many delicious things, and causing so much hassle for the friends, family and restaurants that I eat out at, especially when I know that I could simply forgo the gluten-free diet for a day and and not suffer for it.

 

Day to day, I'm not terribly careful about cross-contamination (I share a kitchen with gluten-eaters, I eat oats, and generally use the rule that, as long as the food label does not have any identifiable gluten-related ingredients, it's good to go).  On one particular occasion, when I had friends in town, I decided to test my gluten reaction, and went all out on a brewery tour, drinking gluten beers, and eating everything I could think of that had gluten in it.  Even though I had only been on the gluten-free diet for a month, it was such a heavenly release to feel and eat like a normal person again.  The next day I was a little bloated and gassy, but it was only a minor discomfort and well worth the previous day's deliciousness. 

 

So what is my question?  If I don't suffer physical symptoms from the gluten, is it okay for me to occassionally lapse like I did on my gluten weekend?  I am fully aware of the risk of continuing to eat gluten as a person with Celiac's Disease.  I know that there is an increased risk of intestinal cancer and other complications later in life.  That's why I decided to begin the gluten free diet.  Thus, does relapsing like this once every month or so reverse all of the healing that my intestine has done to this point and bring me back to square one?  I would hate to eat gluten for one day of bliss and erase an entire month of gluten free eating and healing.  Likewise, even if I don't feel symptoms from cross-contamination, is there a chance that even trace amounts of gluten are getting into my food and causing a reaction in my intestines, thus reversing the healing that I have been working so hard to promote?

 

I would appreciate any insight you my have on the biology of a healing intestine, or any similar experience you could share.  Thanks!

Ever hear of the saying never poke a sleeping dragon?

 

You are playing a very dangerous game if you do that.

 

Just because you have no issues now, does not mean your next experience won't be a walk in the park.

 

Likewise with the CC.

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So I have a kind of unique situation, but I guess everybody does, to a certain extent.  I was totally asymptomatic when I was diagnosed with Celiac Disease about two months ago.  I was skeptical at first, but, to my doctor's urging, I started a gluten-free diet.  I've been on the diet for about a month.  It's definitely been difficult at times to feel like I am missing out on so many delicious things, and causing so much hassle for the friends, family and restaurants that I eat out at, especially when I know that I could simply forgo the gluten-free diet for a day and and not suffer for it.

 

Day to day, I'm not terribly careful about cross-contamination (I share a kitchen with gluten-eaters, I eat oats, and generally use the rule that, as long as the food label does not have any identifiable gluten-related ingredients, it's good to go).  On one particular occasion, when I had friends in town, I decided to test my gluten reaction, and went all out on a brewery tour, drinking gluten beers, and eating everything I could think of that had gluten in it.  Even though I had only been on the gluten-free diet for a month, it was such a heavenly release to feel and eat like a normal person again.  The next day I was a little bloated and gassy, but it was only a minor discomfort and well worth the previous day's deliciousness. 

 

So what is my question?  If I don't suffer physical symptoms from the gluten, is it okay for me to occassionally lapse like I did on my gluten weekend?  I am fully aware of the risk of continuing to eat gluten as a person with Celiac's Disease.  I know that there is an increased risk of intestinal cancer and other complications later in life.  That's why I decided to begin the gluten free diet.  Thus, does relapsing like this once every month or so reverse all of the healing that my intestine has done to this point and bring me back to square one?  I would hate to eat gluten for one day of bliss and erase an entire month of gluten free eating and healing.  Likewise, even if I don't feel symptoms from cross-contamination, is there a chance that even trace amounts of gluten are getting into my food and causing a reaction in my intestines, thus reversing the healing that I have been working so hard to promote?

 

I would appreciate any insight you my have on the biology of a healing intestine, or any similar experience you could share.  Thanks!

I guess you could say I was pretty much asymptomatic when I went to the Gastro for a routine colonoscopy.  I had two anemias (one genetic so I knew about that) and low ferritin (stored iron) and Hashimoto's Thyroiditis (diagnosed almost 15 years ago).  During the consult for the colonoscopy,the gastro said that wanted to scope me for celiac when he did the colonoscopy provided my blood test came back positive.  I was floored!  My husband has been gluten-free for 12 years (no official diagnosis) and I had no abdominal issues (unless I consumed milk proteins, eggs, garlic, mushrooms and some tree nuts).  I lived for bread!  I baked all my own bread too!  Cakes, cookies, you name it, I was the baking queen!  I was always careful not to gluten my hubby though! 

 

My blood test came back as "mildly celiac" and during the six weeks or so up to my endoscopy, I ate loaf of bread a day, made cakes and cookies even store bought favorites.  I was going to have a good biopsy for sure!  I knew I'd have to give up all the gluten, so I ate as if I were on death row!  

 

Biospy results were moderate to severe in just six weeks!  By the time of my test, I started having abdominal issues:  gas, bloating, indigestion, a "rock" in my stomach (just a feeling), and a bit of diarrhea.  I became even more fatigued as my thyroid meds and iron were not be absorbed.  

 

Seven weeks after starting my gluten-free diet (started the evening of my biopsy), I finally got rid of the abdominal symptoms, but the anemia hasn't improved one bit even taking iron and my thyroid is worse.  

 

I'm fortunate that my symptoms are not as severe as others here and I think it was plain luck (or my gastro just attended a conference on celiac) that it was found.  I'm only hoping that I can completely heal my intestines within the next year so that I can absorb iron and thyroid.  Who knows that damage to my bones and that's not good for a cyclist!    

 

You didn't state why you were tested to begin with nor did you say how you were diagnosed, but based on my personal experience it doesn't take long to cause significant and possibly permanent damage. 

 

Good Luck!

 

P.S.  I bake as much as ever -- just gluten free.  

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Yes.  You are damaging yourself.  But you are an adult so you will do what you want.  Please do not have children (assuming you can have any-many with untreated Celiac cannot).  It isn't fair to a child to have a parent who doesn't take a disease they may also have seriously.  Harsh? Yes. But you are making a decision that could be a matter of life or death - you need to know all the facts.

 

 

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

 

 

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve."

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When undiagnosed, my celiac symptoms came and went - some years were great and others were miserable. Eventually the bad times were the norm, I developed other life threatening diseases, and I ended up with a lot of pain. If i could go back in time and drop gluten when i was a tiddler, I would. I am absolutely certain that my adult years would have been much much healthier.

 

Any gluten you eat will hurt you. Minute amounts of gluten will set you back weeks, if you eat it everymonth, you will never heal. I hope you will choose to go gluten-free and take cc seriously. If you choose not to, i hope you have good health insurance.  Best wishes.

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The way I see it, is that you've been thrown a lifeline of being given the knowledge that you have celiac and can now do something to improve your health. Maybe you need more proof of the damage in order to keep you on the straight and narrow...can you see your biopsy results and speak to a dietician etc? Ever since my diagnosis and explanation about celiac from the specialist I imagine my villi getting covered with poison which stops nutrients getting in my system...I once purposely tried to eat some gluteny bun as I couldnt resist temptation..but fortunately with every bite I felt guilty and imagined my damaged villi and didnt enjoy it one bit...it wasnt worth it.

Friends or family dont always want to understand (as mine dont always...my dad is always saying "oh this wont hurt" ... I actually get quite offended by the ignorance and am learning to stand my ground.

You might think that by occassionally induldging its not affecting you...but how do you really know? What if by you keep lapsing and setting off those antibodies is like picking a scab that will never heal and What if, by doing this you are actually creating more toxins in your body to cause cancer or other related autoimmune diseases or indeed refractory celiac? (please anyone correct me if im wrong).

I know its hard at first, but try to focus on what you can have and the benefits..ie you might become a fantastic cook or eventually develop energy both mentally and physically you never knew you had because youve got so used to the "normal" you.

All the best ... you can do it :)

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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