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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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SeekingSarah

Saw Gi Today, "i Think It's Just Ibs" Grrrr

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Horrible day for symptoms too...blood this am with bm. Ate a turkey sandwich on a wheat deli thin before appt and I don't know why had such horrible bloating and cramping while there, driving home felt I need to puke too...got home nothing but flem when I tried to puke, and even more blood and clotting with bm (I have fissure and hemmoriods, but there was no pain associated with the bleeding like usually with the fissure). I curled up in a ball and went to bed at 6 pm. I can't function like that, I'm taking an online class and at this point going to withdrawal since I'm usually sleeping when not working. 

 

BUT....oh yeah Dr. GI initial thought is it's "just" IBS. He asked a few questions, felt my abdomen...then said "be right back"...came back into exam room with samples of a medication. I don't even know the name right now, I'm too pissed off to open the bag again. I'm not taking it until I see the blood results. Oh yes, on the positive side he agreed to at least do the Celiac testing. He ordered blood work, I don't know what all he ordered, I asked the lab woman and she said CBC was on of them, and the 4th vial she didn't know what it was exactly but it was going to be sent to the Mayo Clinic, so tell me 4 vials of blood, only 1 being sent away...think they do the full Celiac panel from one tube? I can check the results myself online in a few days....that is GREAT! He said since I had a colonoscopy in 2009 that was normal, no need to repeat it...thank you. I asked about an endoscopy, he said he'd be willing to do one and take a biopsy, let's see what the blood work results are....oh and he thinks seeing a dermatologist for the "skin issue" is a good idea. 

 

He doesn't advise anyone to go on a Gluten free diet unless it's necessary since it's "such a restrictive diet"...us um doctor but if it STOPS all these symptoms by simply excluding a food...it's a good thing! Tonight I threw together a chicken sausage, spinach, onion, mushroom, quinoa dinner....yes I know processed sausage not the best but it is Adele's which claims to be gluten free...thank goodness I can cook...I think I can adjust to Gluten free quite well just waiting for all the test so I can give it try.

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One of my kids Celiac panel was 1 vial sent to Mayo. So hopefully.....

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One of my kids Celiac panel was 1 vial sent to Mayo. So hopefully.....

Thank you! I didn't want to make him mad by pulling out my list and asking that he make sure all were done, he already wasn't completely on board...and I know my PCP in FL (next time I see her, I live in Ohio now) would order anything he did not order.

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Hopefully you get the answers you are looking for! Dr's can be great but they can also be very frustrating. Mine didn't even consider celiac the first time I mentioned it (over 2 years ago) but gave me the blood requisition anyways (which I didn't do) and then the fill in doc that I went to said to me "that doesnt really look like just atopical dermatitis..." on my severely blistered legs but had nothing to add other than, if the cortisone cream (stronger one than I was on) doesnt work, come back. (also ordered a celiac test) By the time I came back, I had researched DH and was ready with the info to be tested. Unfortunately she did it completely wrong so it will likely come back negative. 

I hope you hear very soon! 

 

 

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Initial blood results back CBC, CMP, and SED rate...the CBC and CMP look normal to me...SED rate which measures inflammation normal is 0-20...mine is a 65.

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Most people who have never followed a gluten-free diet think it restrictive and that statement comes out of ignorance.  It is not a restrictive diet.  I am eating more variety of foods that I never knew existed before.  Ask anyone if they have ever heard of quinoa or teff flour before.  The only thing that is restrictive with the gluten-free diet is that you cannot have too much processed food or fast food......we all know people need more of that!  :rolleyes:   I really hate GI doctors and refuse to ever go to one.  My functional medicine doctor was the one who agreed to run the Celiac blood panel and lo and behold, I had my answer!

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I know, I'm like hello FUNYUNS are gluten free...I'm GOOD. LOL Joking...sorta. I already eat a lot of unproccessed food, I was eating MORE "whole grain fiber" foods to HELP with the supposed IBS from the last GI who brushed me off...now this one is saying IBS without even having the other's records or any test yet...so you get IBS from pushing on my abdomen? Well...a lot of post weight lose surgery patients have constipation...um that's NOT what I have, I have a combination...I actually have 2-3 BM a day....trust me I'm active in the WLS community and see others talk about going DAYS with no bm....that is not what I have going on here....not to mention the rash, etc, etc, etc, etc. 

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That's a sucky answer to get! Very frustrating as well. If you are considering the biopsy, you'll need to stay on gluten, just going to put that out there. I'm two and a half weeks away from my biopsy and I had to go back on gluten after 3 weeks off and I'm about ready to call in sick for the semester. Going back on is a lot harder than staying on. 

 

And here I am with the unpopular opinion... perhaps you could have IBS and Celiac? I don't know how common it is but I had an IBS diagnosis in 2010, but with the symptoms I can identify now that I have that under control and am back on gluten, I think the celiacs just started within the past year or two when I know the IBS started in 2006. I have a completely separate reaction to foods that are high in sodium, have caffeine, have lots of super processed corn, among other things than I do to eating gluten. Unfortunately, that doesn't work with your doctor's excuse that eating gluten free is so restrictive... Have you seen how much caffeine normal college students consume? :P  I'm not saying that your self diagnosis of celiacs is wrong, but there could be other things happening as well that need attention too, like other food intolerances. 

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Oh yes, I've been a college student and I used to work at a university in Student Affairs....caffeine is a best friend. I am going to get the GI records from 2009 just to see what blood tests were actually done and what the results were...just curious. The IBS dx was basically in 2009 was basically because the Celiac and Chrohns were negative. If what the rash I have is DH then I've had it waaay before 2009. I do plan on staying on gluten until after an endoscopy per what I read here and definitely do not want to go off then back on. I noticed the IBS meds the GI just gave me is different name than the meds the NP prescribed (I never picked up), not taking either IBS meds until I see the latest blood results. Glad the hospital I went to has online chart so I can access them myself. Oh I don't doubt I have LOTS of issues...this would just another of the "odd" health issues I have...or the solution to many of the "odd" issues. I need to put them in signature here...is there a space limit??? LOL

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with electronic med recs, he could have seen the old recs.  which kinda defeats the "2' opinion" visit.

I know, I'm like hello FUNYUNS are gluten free...I'm GOOD. LOL Joking...sorta. I already eat a lot of unproccessed food, I was eating MORE "whole grain fiber" foods to HELP with the supposed IBS from the last GI who brushed me off...now this one is saying IBS without even having the other's records or any test yet...so you get IBS from pushing on my abdomen? Well...a lot of post weight lose surgery patients have constipation...um that's NOT what I have, I have a combination...I actually have 2-3 BM a day....trust me I'm active in the WLS community and see others talk about going DAYS with no bm....that is not what I have going on here....not to mention the rash, etc, etc, etc, etc. 

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The GI I saw in 2009 was in Miami, FL, this new doctor was in KY as I have moved back to Ohio...they didn't even have the 2009 GI name nor a release from me to get the records. I offered the name and phone at check in but the receptionist said they get it from me if the Dr wanted them...

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My thoughts exactly...I've also read a few places on IBS forums that IBS would not cause the elevated SED rate....

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    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
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      http://udisglutenfree.com/product-category/pizza-crust/
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      https://www.geefree.com/collections/all/products/cheese-pizza-pocketshttps://cappellos.com/collections/pizza
      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      https://realgoodfoods.com/productpage/
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      https://www.califlourfoods.com/collections
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      http://glutenfreedelights.com/our-sandwiches/
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
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