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Jennifer S.

COMPLETELY silent celiac

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@Johnny55400

Welcome!  Something must be wrong in order for your doctor to order two endoscopies.  Perhaps you meant a colonoscopy?      That is commonly ordered after age 50 for a colon cancer screening.  It was how my celiac disease diagnosis was caught.   During my GI consult (to prepare for the colonoscopy), he noticed I had anemia.  He ordered some celiac blood tests and I was scoped from both ends.  I had no gastrointestinal symptoms at the time, so I was shocked!   It is possible to reach the small intestine via colonoscopy.  Not common, but it does occur.  

If you did not go in for a cancer screening and did have an endoscopy (down your throat), you must have had some issues in order for your GI to order the test.  

In any case, please go gluten free.  Two months after my diagnosis, I fractured my back doing NOTHING.  Seems that I has osteoporosis and I did not know!  

Here is a list of things your doctor should check as the damage from celiac disease is often hidden!  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Thank you for coming to the forum.  It is hard to get a celiac disease diagnosis, but I can tell you that eventually you will feel much better after you grieve a bit.  The benefit is that you have an autoimmune disorder that can be treated with food.  How lucky is that?  ?

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I have silent Celiac confirmed blood and 3 biopsy. New Drs still question it because my bones are fine. No nausea or gi symptoms. No anemia. Hence silent. The damage was visible on the endoscope and i saw the video of pink turning to grey desert about 2 feet into my upper gi in the recovery room. My Dr. Said in recovery, you have Celiac you can never eat gluten again, do you understand what i am saying? That was the last time i saw him and my only follow up advice regarding Celiac. I have found I am my own heroine when it came to my recovery. Read lots of books, medical papers and research as well as nutrition and cookbooks. I had folowup bloodwork checks every 6 months all clear and nutritional blood tests to supplement my diet. I had a colonoscopy and pill camera last year and my gi is pristine. After 10 years i am confident i will not perish from Celiac or complications like my father and that keeps me going.

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My doctor had sent me this after my first endoscopy and biopsy. After this stage, she asked me to go gluten free for two months. After this period my blood test was almost at the right level. I mention to her that maybe my intestine was "red" (mildly she said) because I took many naproxen at that time due to a sciatica. Then she told me to eat some gluten for two months and repeated the endoscopy. My blood test was high again and my intestine still red. Still waiting for the biopsy. Does anyone knows what kind of informations I will get from the biopsy? I think I am going to ask to be tested for malabsorption and bone density? Not sure what kind of doctor will operate those tests...

 

"Silent" celiac disease — If you have a positive blood test for celiac disease and an abnormal small bowel biopsy, but you have no other symptoms of celiac disease, you are said to have "silent" celiac disease. It is not clear if people with silent celiac disease should eat a gluten-free diet. Blood tests for malabsorption are recommended, and a gluten-free diet may be needed if you have evidence of malabsorption.

Testing for malabsorption — You should be tested for nutritional deficiencies if your blood test or bowel biopsy indicates celiac disease. Common tests include measurement of iron, folic acid, or vitamin B12, and vitamin D. You may have other tests if you have signs of mineral or fat deficiency, such as changes in taste or smell, poor appetite, changes in your nails, hair, or skin, or diarrhea.

Other tests — Other standard tests include a CBC (complete blood count), lipid levels (total cholesterol, HDL, LDL, and triglycerides), and thyroid levels. Once your celiac antibody levels return to normal, you should have a repeat test once per year.

Many clinicians recommend a test for bone loss 12 months after beginning a gluten-free diet. One method involves using a bone density (DEXA) scan to measures your bone density. The test is not painful and is similar to having an x-ray. If you have significant bone loss, you may need calcium and vitamin D supplements, an exercise program, and possibly a medicine to stop bone loss and encourage new bone growth. (See "Patient education: Bone density testing (Beyond the Basics)".)

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3 hours ago, Johnny55400 said:

"Silent" celiac disease — If you have a positive blood test for celiac disease and an abnormal small bowel biopsy, but you have no other symptoms of celiac disease, you are said to have "silent" celiac disease. It is not clear if people with silent celiac disease should eat a gluten-free diet.

If you have an abnormal small bowel biopsy you absolutely have to go gluten free. Otherwise you can develop serious issues like cancer.

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A primary care physician can order vitamin/mineral deficiency tests and a DEXA scan.  

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Every one seems to affirm that silent Celiac people will damage their villi if they continue to eat gluten. Is it really proven scientifically and documented with examples of people having serious complications after opting to eat gluten despite being diagnosticated with Celiac? I do not want play with the devil but I was just wondering.

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7 minutes ago, Johnny55400 said:

Every one seems to affirm that silent Celiac people will damage their villi if they continue to eat gluten. Is it really proven scientifically and documented with examples of people having serious complications after opting to eat gluten despite being diagnosticated with Celiac? I do not want play with the devil but I was just wondering.

The definition of a person with silent celiac is a person with villi damage that doesn't feel symptoms.

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26 minutes ago, tessa25 said:

The definition of a person with silent celiac is a person with villi damage that doesn't feel symptoms.

So true!  ?

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38 minutes ago, Johnny55400 said:

Every one seems to affirm that silent Celiac people will damage their villi if they continue to eat gluten. Is it really proven scientifically and documented with examples of people having serious complications after opting to eat gluten despite being diagnosticated with Celiac? I do not want play with the devil but I was just wondering.

Sorry.  You are damaging yourself by eating gluten.

"Silent celiac disease is also known as asymptomatic celiac disease. Patients do not complain of any symptoms, but still experience villous atrophy damage to their small intestine. Studies show that even though patients thought they had no symptoms, after going on a strict gluten-free diet they report better health and a reduction in acid relux, abdominal bloating and distention and flatulence. First-degree relatives (parents, siblings, children) , whether or not experiencing symptoms, should always be screened, since there is a 1 in 10 risk of developing celiac disease..."

https://celiac.org/celiac-disease/understanding-celiac-disease-2/celiacdiseasesymptoms/

 

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This is a really good conversation. I am so similar to what is being discussed here and this really helps me (I am a male 60). I go in for my endoscopy in a few days. I too have no physical symptoms and never thought this would happen to me at my age. I do have very low ferritin levels (17) and elevated Liver enzymes which is how my Doctor suspected I had celiac disease. My iGa came back at 193 which is why he sent me to a GI Doctor for further testing. It is hard to except living a challenged life eating Gluten Free with no outward symptoms. It can be demoralizing but I guess we need to look at the bigger picture. Do we really want to take a chance and risk our later years getting an illness that could of been prevented? My Dad died at 89 years old this past January from multiple myeloma and I took him for chemo every week for 5 years - an experience I will NEVER forget. I realize that multiple myeloma is not Celiac Disease but if there is any bit of chance I can prevent a cancer or some long term damage I need to try. I need to try for the sake of myself, my wife and my family. I know celiac desease can impact so many health issues that you need to look at how much of a risk do we take? 

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3 hours ago, vvicin02 said:

This is a really good conversation. I am so similar to what is being discussed here and this really helps me (I am a male 60). I go in for my endoscopy in a few days. I too have no physical symptoms and never thought this would happen to me at my age. I do have very low ferritin levels (17) and elevated Liver enzymes which is how my Doctor suspected I had celiac disease. My iGa came back at 193 which is why he sent me to a GI Doctor for further testing. It is hard to except living a challenged life eating Gluten Free with no outward symptoms. It can be demoralizing but I guess we need to look at the bigger picture. Do we really want to take a chance and risk our later years getting an illness that could of been prevented? My Dad died at 89 years old this past January from multiple myeloma and I took him for chemo every week for 5 years - an experience I will NEVER forget. I realize that multiple myeloma is not Celiac Disease but if there is any bit of chance I can prevent a cancer or some long term damage I need to try. I need to try for the sake of myself, my wife and my family. I know celiac desease can impact so many health issues that you need to look at how much of a risk do we take? 

I approached my diagnosis in a proactive way. My mother had uterine cancer and father passed from cardiac arrest. Both had an unhealthy relationship with food and diseases that come with it. I have turned my mortality rate and life around by learning to eat for living life not for fun. I tell people that being diagnosed actually saved my life in more than one way. There are so many things in life that are out of our control. Eating healthy gives me a small feeling of control.

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On 4/25/2017 at 5:19 PM, Jennifer S. said:

9 months ago I went to my doctor for normal blood work.  She called me to tell me everything looked great, but o yeah, my gluten sensitivity levels were extremely high.  I should probably stop eating gluten since it looks like I have celiac.  She hung up and I never heard from her again.  I cut out gluten completely, even though I have never experienced one single symptom of celiac.  9 months later, I decided to reach out to another doctor to get a second opinion, as I experienced absolutely zero change on 9 months of strict gluten free diet.  All this doctor did was request the results from the previous doctor, tell me it is confirmed I have celiac, and hung up the phone.  This angers me tremendously on two counts.  One, I have absolutely zero symptoms of celiac, and would NEVER know if I was "glutened".  Two, the complete lack of information or support from both doctors is horrifying to me.  And finally, I simply do not believe the diagnosis and as considering just starting to eat a normal diet again.  I would never know the difference.  I am really just venting because this situation upsets me so much, and I have suffered mentally and socially from going gluten free.  Since I have absolutely zero symptoms, even if I was actually celiac, I highly doubt anything would ever come of it if I continued to eat gluten.  I could just pretend I never heard from either terrible doctor and go on living my life.  Someone has to have been in the same situation as me, right?

I had a positive blood test and biopsy for Celiac disease.  I have no symptoms except anemia which has been treated successfully with iron tablets. I have a hard time wanting to do gluten free eating.

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