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Coloscopy


skinnyminny

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skinnyminny Enthusiast

I was at a celiac support group meeting last night and they were sayin celiacs need to have a colonoscopy every 2 years. I am only 19 years old, and I was wondering if anyone knows if this is necessary for someone my age, they were shocked to know I have NEVER had one.. please if anyone has any information about this let me know!


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AmandaD Community Regular

I have celiac diagnosed by small intestinal biopsy and my doc has never recommended follow up colonoscopies (I originally just had a sigmoidoscopy)...Celiac doesn't affect the colon, persay, it's the small intestine. I think you occasionally may need a follow up small intestinal biopsy or EGD to check to make sure you are healing if you were having continuing symptoms...

A

I was at a celiac support group meeting last night and they were sayin celiacs need to have a colonoscopy every 2 years. I am only 19 years old, and I was wondering if anyone knows if this is necessary for someone my age, they were shocked to know I have NEVER had one.. please if anyone has any information about this let me know!
skinnyminny Enthusiast

That sounds right to me I was diagnosed 5 years ago and have had no follow up work other than a few check ups.

ravenwoodglass Mentor
I was at a celiac support group meeting last night and they were sayin celiacs need to have a colonoscopy every 2 years. I am only 19 years old, and I was wondering if anyone knows if this is necessary for someone my age, they were shocked to know I have NEVER had one.. please if anyone has any information about this let me know!

Celiacs can have a higher rate of adenocarcinomas and other cancers of the GI tract, but I believe this happens mostly with those of us who are undiagnosed for an extended period of time. Are you sure they said a colonoscopy and not a endoscopy? I could understand GI doctors wanting to do a endo every couple of years, to check if the villi are still healed, after all they don't get much money from us once we are dietary compliant and aren't sick anymore. <_<:D This is not something I would worry about unless your personal GI specialist said you need it for some reason, like for example you were not getting better on the diet.

IrishKelly Contributor
I was at a celiac support group meeting last night and they were sayin celiacs need to have a colonoscopy every 2 years. I am only 19 years old, and I was wondering if anyone knows if this is necessary for someone my age, they were shocked to know I have NEVER had one.. please if anyone has any information about this let me know!

I am now 28, and i had a partial-colonoscopy (not all the way through the entire intestines, just up to the colon...which didn't require sedation) and that was when i was 24, and I haven't needed one since. I have to say, your advice on this topic/issue is only as accurate as the person your getting your answers from. My point of view?? Why on earth would you allow a doctor to invade your intestines every two years when you know that the diet is working? You will heal fine so long as you stick to the diet and pay attention to any other food intolerances (especially as young as you are...knowing that the risks of cancer, etc. are minimal because the damage is only minimal due to your age). I personally feel it's being a little to over cautious to go every two years for a colonoscopy.

On another note, have you started to take any natural supplements to progress your healing process? L-Glutamine and Digestive Enzymes will help to heal you in half the time. They are not only available in a health food store, but they are over the counter in many other stores (although i do reccommend buying them from a health food store for risk free purposes ;) )

happygirl Collaborator

I must say, I've yet to hear of anyone recommending a colonoscopy every two years. Like it was mentioned before, the correct procedure to check for damage is an endoscopy, which checks the small intestine.

If they were in fact referring to an endoscopy (EGD), the "old" thinking used to be that follow up biopsies were necessary. Now, that is not the case.

Taken directly from Dr. Fasano's website (a leading Celiac researcher and physician) Open Original Shared Link

Do I need to repeat the biopsy once on a gluten-free diet?

If you are diagnosed based on positive serology and biopsy, and your symptoms improve once on a gluten-free diet, you do not need a follow-up biopsy.

The problem is that "old" thinking is hard to change. Many Celiacs who have had it for a long time have not caught up on recent research and continue to pass out information that came out long ago.

Many Celiacs were diagnosed on bloodwork alone---you will find many on this board. Heck, many Celiacs did not do bloodwork OR biopsy, but know that they do better without gluten in their diet.

So, unless you are having problems, then "usually" followup biopsies are not needed. Usually the first step, even if there are problems, is to run the bloodwork again.

Hope this helps clear things up. Does this help answer your question?

cmom Contributor

I have the celiac panel and small bowel series with follow-through every 3 years. I believe I am due in 2007 again. However, I am thinking of rejecting the small bowel series because the barium I have to drink may contain gluten. If I am mistaken about this, anyone may speak up to correct me.


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trents Grand Master
I have the celiac panel and small bowel series with follow-through every 3 years. I believe I am due in 2007 again. However, I am thinking of rejecting the small bowel series because the barium I have to drink may contain gluten. If I am mistaken about this, anyone may speak up to correct me.

I had a CT of my abdomen recently with contrast, i.e., had to drink the barium milkshake. I inquired about it containing gluten on the day I scheduled the appointment. The radiology tech researched it and the next day had the info that it was gluten free. So, make sure you ask and get them to check it out.

Steve

happygirl Collaborator

cmom,

do you mind if i ask why you are having the barium/follow through? to check for other issues/maintenance (to make sure everything else is ok...no complications), I'm assuming, since it isn't used for Celiac testing. Wow-every three years---you are a better person than me :P I can handle lots of stuff...drinking that stuff was not one that went over well with me!!!

Due to non-celiac health issues, I had one this spring. I apparently wasn't her first Celiac and she knew that it was gluten free! So, I would recommend calling beforehand to have them verify it...but it looks like, at the very least, there are 'brands' of the stuff that are safe.

Hope this helps.

Laura

SanteeBay Rookie

I am 43 and was diagnosed 3 weeks ago. Positive blood and positve biopsy. I saw my doctor today and he wants me to have another endoscopy in 6 months, but I don't have to have another colonoscopy until I am 50 (WhooHoo!) You are lucky you found out when you are so young, unlike a lot of us who have felt terrible our whole lives and didn't know why..

Lisa Mentor
I am 43 and was diagnosed 3 weeks ago. Positive blood and positve biopsy. I saw my doctor today and he wants me to have another endoscopy in 6 months, but I don't have to have another colonoscopy until I am 50 (WhooHoo!) You are lucky you found out when you are so young, unlike a lot of us who have felt terrible our whole lives and didn't know why..

SanteeBay:

We have a lots of stories, a lot of histories and every one who posts here has a personal history. Many are know by us, who have been here a long time, and may suffer in silence. Do you reallty thing that we have not all walked in your shoes? <_<

"Lucky that you have found out...". I am glad that you found out why you were feeling so bad and happy that you have a conclusion.

There are some people here that have very serious side effect from un dx's celiac. Many are my friends and they are not so lucky.

Count you blessings, trust me. :)

cmom Contributor
cmom,

do you mind if i ask why you are having the barium/follow through? to check for other issues/maintenance (to make sure everything else is ok...no complications), I'm assuming, since it isn't used for Celiac testing. Wow-every three years---you are a better person than me :P I can handle lots of stuff...drinking that stuff was not one that went over well with me!!!

Due to non-celiac health issues, I had one this spring. I apparently wasn't her first Celiac and she knew that it was gluten free! So, I would recommend calling beforehand to have them verify it...but it looks like, at the very least, there are 'brands' of the stuff that are safe.

Hope this helps.

Laura

I have the barium/follow through to make sure I haven't developed any lymphomas or other problems. The last time I went in for one I already wasn't feeling well. Afterward, I became very sick. The hospital was about 45 minutes from my home. I had it coming out of both ends before I made it there. That's one reason I thought maybe the info I had was right about it containing gluten. I have wondered if it's really necessary though.

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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