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Is This From Celiac?
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3 posts in this topic

Ok.... so last year, I was really sick. I was missing a lot of school, and no one knew what was wrong, but a little over 2 months ago I was diagnosed with celiac disease. I've been eating gluten free since then. Overall I've been feeling much better, but still not perfect (I know it could take over 6 months or up to a year to completely heal). Last year toward the end of the school year I was only going to school 1 to 2 days of the week because of how sick I was (I was still able to make up all my work and pull a 3.5 gpa though yay). This year, I've been going to school almost every day.

Even though I've been doing better, I'm still having sleeping problems, and I still sometimes have these random days where I'm so tired that I can barely move and have no energy. I'm like almost dead. This morning, I couldn't get up and I slept until about 3:30 in the afternoon. It was the second day of school that I missed in the last month. I'm almost positive that I haven't been glutened, but sometimes this happens to me randomally. Other than that, I've bene hanging in there. Has this happened to anyone and is this from celiac disease? Thanks in advance :)

edit: I should also mention that I was glutened like two weeks ago (i was really hungry and ate bacon cheese fries at nathans which i knew was stupid) but I thought it was out of my system. Could I have gotten randomally sick today from that?

Edited by dd6444
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edit:  I should also mention that I was glutened like two weeks ago (i was really hungry and ate bacon cheese fries at nathans which i knew was stupid) but I thought it was out of my system.  Could I have gotten randomally sick today from that?

<{POST_SNAPBACK}>

I was told recently by a neurologist that if you put a gram of gluten and a drop of blood (from a celiac disease person) together in a petri dish - an interactive attack will begin almost immediately and will be sustained for days - even weeks.

This is not to be mess with. Claire

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If you have been having the problem with fatigue even before you were glutened it could be because you are still deficient in many nutrients. Has your doctor run blood tests for this? Celiacs are often times deficient in vitamin B12, which can cause fatigue among other problems and is very important. Once you are eating gluten free, even if your are taking a pill vitamin it is most likely not being absorbed as the intestines remain damaged for a while. Shots or sublingual tablets are better for absorbtion.

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    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
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