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Do I Really Have Celiac?


DKS

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DKS Newbie

I was diagnosed with celiac about four years ago, i had the blood test only because my sister had celiac and they wanted to test all of her siblings. she had all kinds of simptoms, i never had any. i went on a strict gluten free diet for about two years and i have just recently gone back on glutin, i have not noticed one bit of difference going back on wheet. is it possible to have celiac and never have any simptoms or have any discomfort of any kind??


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ravenwoodglass Mentor
I was diagnosed with celiac about four years ago, i had the blood test only because my sister had celiac and they wanted to test all of her siblings. she had all kinds of simptoms, i never had any. i went on a strict gluten free diet for about two years and i have just recently gone back on glutin, i have not noticed one bit of difference going back on wheet. is it possible to have celiac and never have any simptoms or have any discomfort of any kind??

Yes it is possible. It is also possible that you have healed any damage you did have and that it will take a bit for any symptoms to show up. You also may have an 'unusual' presentation with organs other than the gut being effected. Gluten can effect the skin, joints, growth, brain function etc. long before GI symptoms show up. Also if you are a teen or a young adult many will go through a phase where they seem to be healed only to have more serious problems develop. Some of these problems can be really serious like lymphomas and adenomas. This effect you are seeing may be this 'honeymoon' effect which in earlier times caused doctors to think that children would outgrow celiac. You are still doing damage but it may take awhile to show up.

trents Grand Master

I would agree with what ravenwoodglass said. Evidence is now beginning to pour in that gluten toxicity affects people in many different ways and does damage to many different organ systems. Classic Celiac disease is defined by damage to the mucosa of the small intestine. Now a new term seems to be emerging, "gluten intolerance" which is broader in scope. But as ravenwoodglass has well said, just because you are asymptomatic doesn't mean you don't or won't have damage to the mucosa of the small bowel. In my case I had little or no GI distress. I was diagnosed because I had elevated liver enzymes that had no other explanation. The blood test was positive, however, and the endoscopy/biopsy showed the classic damage to the mucosa. After that a bone density test revealed significant demineralization. I now know why I have lost two inches in height and developed some scoliosis. So, if your blood test was positive you need to get the endoscopy/biopsy done. This disease is sneaky. You don't want to mess around until you discover that there is irreversible damage to some organ system that was so incremental you didn't notice it for a long time.

gfpaperdoll Rookie

I totally agree with the above two posts.

My son age 37, now has liver damage, "idiopathic" according to the doctors. My son refuses to go on the gluten-free diet. I know that he has had this since he was born. I would buy his rice crackers at the health food store, all the while my doctor telling me that was not necessary, wheat never gave a child diarrhea...

I am double DQ1, the gluten intolerant gene & my grandson is also double DQ1, he has failure to thrive, he is 11 now & the same size as the 7 year old & the 9 year old... my son also refuses to let him eat gluten-free...

my mother died of colon cancer, & had severe food allergies the last few years, that required many ambulance trips to the hospital, that was before we knew about gluten.

My double DQ1 sisters have rheumatoid arthritis & IBS among other things, they have "tried" the diet but it is easier for them to eat whatever is around...

DKS Newbie

thanks for the info. so if i go off the gluten-free diet which i already have and then get the biopsy in six months will that be long enough to see damage? a little info on me, i'm 46 in great health, don't smoke or drink, excercise all the time

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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