Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

In Denial Of My Celiac Diagnosis

munkee41182

Recommended Posts

munkee41182 Explorer
munkee41182
Posted

Hey there everyone! Earlier this week I decided to go back on my gluten-free diet. I was diagnosed in 01 through blood tests and a biopsy. I never really had any symptoms that bothered me other than a little heartburn and some constipation. I told my primary of how I was feeling (she knew of my family history of Celiac), had me tested and low and behold I have Celiac! I was on the gluten-free diet very strict for a year and a half....didn't have too much HB but the contipation was still there. So I started to gradually go off the diet and up until a week ago wasn't following it at all.

So for some reason I decided to try to look for a gluten-free cake baker (as I'm getting married in October). I'd like my grandmother, aunt and cousin to be able to enjoy cake...because who doesn't love a good cake!? Then for some reason, something hit me that, crap I should go back on the diet. I haven't had heartburn in a while....and that darned constipation had never gone away.

So why do I feel in denial? I never felt off or had any of the extreme symptoms. I know my cousin was 6 when she was diagnosed, in the hospital for months before they found out what it was. I know I have to snap out of the "oh a big bowl of pasta won't be bad," or "let's order a pitcher of beer while we play pool" but how can I when I don't really feel bad nor feel any improvement with the diet?!

Does anyone else feel this way or am I the only wacko? Thanks for letting me vent, complain, etc. :(:unsure:

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


onelildream Rookie
onelildream
Posted

"Does anyone else feel this way?" How about EVERY DAY! My symptoms are fairly severe and granted I've only been gluten free for a month, but I do challenge it in my thoughts EVERY DAY. A few days ago, I was thinking "naw, this can't be true. Screw it, I'm eating pizza!" So I did. And then I spent 4 hours in the bathroom. My husband asked if it was worth it... Well, no. But yesterday I sure was thinking about pizza again, breadsticks and alfredo. Could it really be that bad?! YES!!! Why do we continue to do it? I'm still at a loss.

munkee41182 Explorer
munkee41182
Posted
  • Author

But see....I've never had that. Maybe that's why I "cheat" more often then not....and I don't get sick or get any of the symptoms that anyone else has. I mean my stomach probably looks like swiss cheese right now....But I can get all this crap that we shouldn't eat and still feel fine. Maybe that's why I say f-it (excuse the language) when my fiance wants to order a pizza....

I dont know...maybe someitmes I wish that I did get sick when I ate gluten so I wouldn't be so "eh I've been off the diet for so long who cares right now" But then remember what my cousin went through....I don't want to go there.

Ugh......that's all I have to say.

fedora Enthusiast
fedora
Posted

I can understand your denial if you only had 2 symptoms that you did not consider awful.

I cheated on and off with wheat for years before I gave it and all gluten up, not cheating.

BUT the thing is that you have celiac disease and on a gluten filled diet you run a higher risk of several cancers. You are getting married, you want to be there in the future with your spouse and possible children.

I am very fair, blue eyes, and have a grandmother with melanoma. You better believe I wear sunscreen, am cautious of sun exposure, and go to the dermatologist.

This is about the quality of your life in the future, not just a bowl of pasta now.

As far as constipation goes, I had to give up cheese. I like pooping every day now that I am off gluten(I was constipated before) and noticed cheese constipates me too. Also not eating enough vegetables and fruits a day will constipate me. Also not drinking enough water.

Good luck, I know it can be hard.

munkee41182 Explorer
munkee41182
Posted
  • Author

Yeah I know it's not about a bowl of pasta...and maybe it's just harder now that not only do I have to watch what I eat...but what my fiance eats (he has kidney disease).

I don't eat that much cheese...I'm a veggie freek...and I think I swim in all the water i drink. Maybe it's time to go back to the benefiber....

Maybe I'm just having an off day..... :(

gfpaperdoll Rookie
gfpaperdoll
Posted

you could really improve your fiance's life if you study up on gluten and dairy & soy you will find that really it is not fit for anyone to consume. I would like to suggest two books "Dangerous Grains" & "Good Calories Bad Calories" by Gary Taubes.

anyone with kidney disease should not be eating gluten, dairy, or soy...

RiceGuy Collaborator
RiceGuy
Posted

About the constipation:

I'd recommend a good magnesium supplement. I'm betting you'll find it much more beneficial than loading up on fiber. Especially if you already eat lots of veggies. In fact, you may have a magnesium deficiency, and like 70% of Americans, simply not know it. There may be other nutrients which your body is lacking too. Once you really feel great, truly great, you might find gluten has a more profound effect on you, and that should also help boost your willpower.

I also thought I felt "fine" until the gluten bomb blew up in my face. The only difference is that I didn't know about gluten. Consider yourself lucky enough to know before the real damage is done.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

It is the "unknown" damage that is scary. Just think you are eating all that gluten and could be feeding lymphoma or colon cancer. That freaks me out!~

Both my grammy's had diabetes. You bet I watch my diet. I have been exercising since I was in my early 20's and started watching my diet about mid 20's. I dont want diabetes.

So in the absence of symptoms, you have to focus on your future. You can choose how it will look, more than you realize.

munkee41182 Explorer
munkee41182
Posted
  • Author

He doesn't eat dairy and soy at all, and he even takes phosphorus binders as well for those foods that still have some phosphorus in it. He has seen a renal dietician about his diet and he said that he can have regular pasta and white breads....but he shouldn't have whole grains and other considered to be gluten-free because it can raise his potassium and cause a heart attack. We've done a lot of research on his diet to see what he can and can't eat and talked to his doctors and nutritionists....with the way his blood levels are, gluten-free diet would not be good for him. We also found this out this week when he went for his blood tests and got a phone call from his doctor screaming at him to go to the ER because he can die from a Heart Attack because his potassium was so high. The only change in his diet was eating gluten-free pasta 3 times inthe past week.

With the type of disease he has we found that every site, book and doctor suggests something different anywhere from being a vegitarian to going gluten-free. I will pick up the books that you recommend though...it will help both of us out with our diets I'm sure. Trust me, if he could go gluten-free, it would be so much easier on out grocery budget and my sanity trying to keep pans separate from each other! :)

munkee41182 Explorer
munkee41182
Posted
  • Author

Magnesium...never thought of that....very wise!

Now my next hurdle....Bridal shower where none of the food is gluten-free! Gotta put something before I go tomorrow!

Sorry if I sound pittiful....I'll get over it/get use to it someday.

AliB Enthusiast
AliB
Posted

The sad thing is that a gluten-free diet adopted early enough might have even helped your fiance avoid the kidney problems!

I would just reiterate what everyone else has. What we do to our bodies has a very sinister way of quietly catching up with us when we least expect it.

I didn't see the diabetes coming but it got hold of me and there ain't nothing I can do about it now. The damage is done. The same with things like cancer. You don't see it coming until it is too late.

Be grateful that you have the opportunity to reverse the possibility of any future damage and try to enjoy your life. There is life after gluten-free. It can be a far better and healthier life than with it.

The clue I had with your fiance's potassium levels was when you said that he had gluten-free pasta 3 times in one week. Gluten-free processed foods are often higher in carbs and sugar than gluten-based foods. Too much in the way of carbs has a detrimental effect on me, so I have to keep low carb.

He CAN do a gluten-free diet. Just stick to good fresh unprocessed meat, fish, poultry, vegetables and fruit and it would do you both good to not over-indulge in the carb-laden stuff, even gluten-free. I often see people saying that they've gone gluten-free but don't feel much better, or got better for a while then got bad again. I am sure it is because they feel so 'deprived' they end up replacing the gluten carbs with loads of gluten-free and their bodies can't cope with it.

gfpaperdoll Rookie
gfpaperdoll
Posted

Yes to what AliB said - He can be gluten free & should be BUT he should not eat gluten-free pasta & all that junk .

Good healthy gluten-free as in meat, veggies, fruits, nuts, seafood... nothing else.

Like Jack LaLanne says - if man made it, don't eat it!!!!!

MDRB Explorer
MDRB
Posted
Hey there everyone! Earlier this week I decided to go back on my gluten-free diet. I was diagnosed in 01 through blood tests and a biopsy. I never really had any symptoms that bothered me other than a little heartburn and some constipation. I told my primary of how I was feeling (she knew of my family history of Celiac), had me tested and low and behold I have Celiac! I was on the gluten-free diet very strict for a year and a half....didn't have too much HB but the contipation was still there. So I started to gradually go off the diet and up until a week ago wasn't following it at all.

So for some reason I decided to try to look for a gluten-free cake baker (as I'm getting married in October). I'd like my grandmother, aunt and cousin to be able to enjoy cake...because who doesn't love a good cake!? Then for some reason, something hit me that, crap I should go back on the diet. I haven't had heartburn in a while....and that darned constipation had never gone away.

So why do I feel in denial? I never felt off or had any of the extreme symptoms. I know my cousin was 6 when she was diagnosed, in the hospital for months before they found out what it was. I know I have to snap out of the "oh a big bowl of pasta won't be bad," or "let's order a pitcher of beer while we play pool" but how can I when I don't really feel bad nor feel any improvement with the diet?!

Does anyone else feel this way or am I the only wacko? Thanks for letting me vent, complain, etc. :(:unsure:

I'm getting married in january and have had a really hard time finding a gluten free bakery big enough to do wedding cakes.... I think I'm just going to ask the wedding cake people to do a gluten free cake and pray for no cross contamination (I don't want to be sick on my honeymoon!!!!)

I think we've all been through the denial. Its so tempting (especially if you have no symptoms) to just give in and eat gluten. Its hard to come to terms with the fact that your life is going to be that little bit less convenient...

Good luck with the wedding, and finding a cake :)

pele Rookie
pele
Posted
BUT the thing is that you have celiac disease and on a gluten filled diet you run a higher risk of several cancers. You are getting married, you want to be there in the future with your spouse and possible children.

I am very fair, blue eyes, and have a grandmother with melanoma. You better believe I wear sunscreen, am cautious of sun exposure, and go to the dermatologist.

This is about the quality of your life in the future, not just a bowl of pasta now.

According to Dr. Peter Green in his book Celiac Disease: A Hidden Epidemic, melanoma is significantly more common in known celiacs than the rest of the population. My mother died of it at age 42.

My brother, who is gluten-intolerant, didn't really care about strict adherence--he'd eat birthday cake at work and have a few beers now and then. He read Dr. Green's book and has not intentionally eaten gluten since. The book expalins what gluten does and all of the health problems that come along with it.

I highly recommend this book.

munkee41182 Explorer
munkee41182
Posted
  • Author
I'm getting married in january and have had a really hard time finding a gluten free bakery big enough to do wedding cakes.... I think I'm just going to ask the wedding cake people to do a gluten free cake and pray for no cross contamination (I don't want to be sick on my honeymoon!!!!)

Michelle, I was going to make a batch of cupcakes (just a small batch) a couple of days before the wedding. We figured that if we can't get a gluten cake, we can put my gluten cupcake behind the actual cake...and cut that. Plus we'll have a few extras for my other family members who have celiac as well. maybe it can work for you. I know it's probably not something that you want to do a few days before the wedding, but if worse comes to worse....it's an option GL with the wedding! :D

ShayFL Enthusiast
ShayFL
Posted

I would sooooo not want to be sick on my honeymoon. I like the idea of cupcakes. Or I was going to suggest a smaller version of your cake gluten-free. But as anal as I am, I would make my own to be safe. Just me.

KimmyJ Rookie
KimmyJ
Posted

How wonderful that you have found someone that you want to share your life with! That is probably your biggest reason to follow the diet. My mother died back in November of CLL, not at all related to Celiac disease, I think the Celiac comes from my dad's side, but it was absolutely excruciating to watch her get sicker and sicker and eventually die. That experience alone would give me enough motivation to follow the diet if I didn't get sick every time I eat anything that has even a speck of gluten in it. Now of course there was nothing that we know of that my mother could have done to prevent the cancer, but knowing that I can do something to reduce the risk of getting some form of cancer and putting my loved ones through that awful experience is reason enough for me. If you've ever read Stephen Covey's books, he says that in order to say no, you need to have a bigger inner yes. For me that's saying yes to being healthy and around for my hubby and sweet little baby. I hope that you find what will drive you to follow the diet, because no matter what any of us may say as far as statistics/reasons to follow it, it has to come from you if it's going to be effective. Best of luck!

FoxersArtist Contributor
FoxersArtist
Posted

I know I would probably be in the same boat as you if my symptoms had not become unbareable to live with. For that I thank God for making me sooo sick before showing me how to get better. Sometimes knowing is so hard to accept when it feels like there is no reward for your efforts and I can't imagine being in that boat. At the same time, I know that celiac can start to cause horrible symptoms at any time. If I were in your situation I would try really hard to keep myself focused on the future. You may feel good now but how are you going to feel in 20 years? Going gluten free now will spare you so much trouble when you get older. I LOVE pasta and cakes and brownies and candy. I have been trying to find all kinds of tasty things I can eat and refuse to eat anything that tastes like carboard. I have just as much right to enjoy food as people without celiac...so, the more research I do the more good food I find and the less I feel like I am missing out. I even found an italian place in our area that serves gluten free pasta! Hurray! Maybe there is something like this in your area too! And when I really get to feeling bummer about eating all gluten free stuff, I try to remember that I'm consuming so many fewer calories than a lot of other people and the grains I am eating like quinoa and buckwheat are more balanced anyway. That makes us celiacs special.

-Anna

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    5. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.