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Could I Still Have Celiac?


shmlaura

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shmlaura Newbie

hey all,

i am twenty years old and have had food problems since i was born. i was on a special rotational diet when i was a child, and was diagnosed with lactose intolerance, and a host of other allergies. As i grew up, i grew out of most of my allergies, but still had pretty bad digestive problems that have always been attributed to IBS. About three years ago i was diagnosed with Anorexia and as i have been on the road to recovery, trying to find foods that i had stopped eating, that would not make me sick now was a big issue. My mom suggested i go wheat free because as i child i had had a biopsy done, at 18 months, which came back negative, but as i have gathered from research, that does not necessairly mean i don;t have a problem. I have read research that eating disorders could help with the onset of diseases such as celiac because your body goes with out gulten for a long time, and then you try and reintroduce it, and your body just says no essentially. Well i have gone wheat free and my depression went away within two days, no joke, and i just felt so much better overall. I ocassionally "cheat" and will have crackers once a week, majority of the time i get sick, other times, my body doesnt seem to care. Sorry for the long history, but i would really like your opinions. My doctor has been of NO help, and i was wondering basically if i could still have celiac disease even though i can tolerate gluten once in a great while in a handful of crackers form. Thanks for your help in advance.

Laura


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Dwight Senne Rookie

Hi Laura,

You say "wheat free" - is that the only gluten product you have avoided? If so, it is more likely that you have a wheat sensitivity, and not Celiac Disease.

If you are completely gluten free (meaning no wheat, rye, barley, oats, spelt, etc.) then it is my unprofessional opinion that you should not be gluten free right now. It will be very difficult to get a diagnosis if you remain gluten free.

I would suggest you take a two pronged approach if you are completely gluten free: First, start trying to slowly re-introduce gluten in your diet. Second, if you have not yet seen a gastroenterologist, go see one. If you have seen one, get a different one! Call around and find one who is experienced with Celiac. Inform him/her of your situation of being relatively gluten free so they do not waste a blood test on you right away. I'm thinking you will need to be on gluten for at least a month or two before the blood test can give accurate results.

Depending on those results and your doctor's impressions of your situation, you may then undergo an endoscopy to get biopsies of your small intestines. For that test, you may need to be on a gluten containing diet for several months!

It seems horrible to have to go through all of that, I know, but it is the only way to get an accurate diagnosis that will be legally and medically recognized.

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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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