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Could I Still Have Celiac?
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2 posts in this topic

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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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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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
    • I can not help you with the the 504 plan, but I do know that I would do it.  My daughter is 15 and so far has tested negative for celiac disease, but in the event she does test positive, she will need a 504 plan to help keep her safe.  I am sure other parents will chime in.  This topic has come up repeatedly.  Until then, try a search with the forum.  Lots of people have posted with their comments and experiences.   As far as lunch is concerned, my kid has not purchased a school lunch since the 1st grade.  She says they are gross.  (Poor me!).  But, I would not trust the school to provide a gluten-free lunch.  Sure, they are required by law, but let's face it, who is working in the kitchens, ordering, etc?  I am on a University campus and have called out food service for not following gluten-free safe practices!    I would pack a lunch, at least until her health has stabilized.  The 504 plan is great for extra trips to the bathroom and hand washing.  It provides some protection in the classroom.   Keep advocating for her Mom!  You are doing a great job!  
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