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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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    • Samanthaeileen1
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
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      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
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