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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newbie Here. Some General Q's What's Better, Gastro Vs. Endo?
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Hello All,

I'm new here... Just signed up this morning. I've been using your comments and advice to help me over the past few months.

Here's my gluten/gluten free history; (26 year old female, btw)

I've been sick for the better part of a year. At first only mildly, and in those sneaky ways. The fatigue, moody, depressed, "I just need to suck it up" kinda way. And the stomach trouble too, but I've been prone to anxiety related stomach aches, etc. all my life. 3.5 months ago, after many trips to the doctor, internet searches and talking to my mom (for someone not employed in the medical field she sure knows a lot about a lot) I slowly pieced things together. I figured gluten intolerance may be the case, my SIL is gluten intolerant and had a lot of the same symptoms and I figured that going gluten-free would be worth a shot. I was getting worse by the day at this point and started to feel the positive effects of being gluten free right away. With a family member who has gone gluten-free already, and a couple of family friends who have Celiac disease I was aware of a lot of things to avoid, but WOW, I had no idea how hard it would be. Each mistake I make seems to make me more sick than the last. Has anyone else experienced this... becoming more sensitive to gluten after trying to go gluten-free?

Here's where I get to the main question: At my most recent visit to the doc she said she is referring my for gastroscopy. With the nature of gluten related or other GI problems I figured endoscopy would be the way to go. Is gastro sometimes the first step before endo because it can be less invasive?

Also, (sorry about the novel length 'question,') how do you all deal with the guilt of missing work? I know that logically it's simple: If you feel crappy and in pain, don't go to work. But then there's the fact that it's my mistake that I didn't read that ONE ingredient for Saturday night's supper. There seems to be a grey area in my head with a constant reel that says, 'I'm not contagious, maybe I should just tough it out, I can work in pain, maybe I'm just being a wimp.' I'm left with go to work and feel like crap, don't go to work, stay in the comfort of my bed while feeling like crap, but feel guilty too. (I really hope this does't sound like a pity party - but I suppose you guys would be the ones who really know how the up and down emotional aspect of all this really feels.)

Last, but definitely not least, I'd just like to say that my boyfriend has been amazing and supportive through helping me figure things out, to making me lemon and sugar water (helps with the cramping) to trying to ease my guilt when I miss work, to handling my moodiness like a champ and not holding it against me. If you're lucky enough to have support like that, don't take it for granted.

Thanks for reading!

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Sometimes the word gastroscopy is used to mean endo (correctly or not). Make sure you have an appointment with the GI before the procedure and make sure you are getting biopsies of the intestine. The GI should be the one to decide what you need. Have you had the blood tests for Celiac? Why not do those first ? Your regular doc can order those. Remember, if you are gluten free, you will not be making the antibodies that show up in the tests and you may have started healing the intestine (making it hard to get a damaged spot on biopsy).

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Thanks for the quick reply, kareng. I confirmed with the doc that she meant start from the top and go down, not the other way around with the scope. Good adice about a consult with the GI. I had blood work before going gluten free ( I had been gluten free for a day and a half before this doc appt, went back on and had blood work a day and a half later,) and it was negative. That didn't surprise me because I've heard blood work often is. I went gluten-free again right after that because I noticed a BIG difference in just a day and a half.

You also answered another one of my questions. Doc wants me to go back on gluten for 2-3 weeks before the scope - good to double check this with the GI I imagine, but sounds like I'm going to have to. Need to figure out if I can go on some sort of medical leave at work I suppose.

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Its possible you don't have Celiac. You could have NCGI (non-Celiac gluten intolerance). It can be every bit as nasty as Celiac but won't show on antibody tests or biopsy. You still might want to have the endo, just to make sure you don't have an ulcer or something else.

Do you have a copy of your blood tests? You might want to post them here so we can see if you even got the right ones. Sometimes these docs haven't even ordered the Celiac panel.

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I figured I was the non-celiac variety, could have mentioned that off the start... Definitely going to have the scope. I don't have my results, the lab sheet just Celiac screening, nothing more specific.

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The doctor who ordered the tests must have the results - they need to be more specific than just 'negative'.

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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