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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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    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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