• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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?
0

6 posts in this topic

Recommended Posts

Wowza    0

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!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


kareng    1,992

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).

Share this post


Link to post
Share on other sites
Wowza    0

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.

Share this post


Link to post
Share on other sites
kareng    1,992

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.

Share this post


Link to post
Share on other sites
Wowza    0

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.

Share this post


Link to post
Share on other sites
Ads by Google:


mushroom    1,205

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,905
    • Total Posts
      938,580
  • Member Statistics

    • Total Members
      65,815
    • Most Online
      3,093

    Newest Member
    Jmsc4321
    Joined
  • Popular Now

  • Topics

  • Posts

    • I was browsing on QVC this morning and found they have a bread machine on sale.  It has a gluten free setting. Remember someone asking about them not too long ago so thought I would post a link to the item. Be sure to read the questions and answers at the bottom of the ad.  It is on sale for about $100 http://www.qvc.com/Breadman-2lb-Multi-Function-Stainless-Steel-Breadmaker.product.K44909.html  
    • Well, as a celiac the gluten causes your own body to flare with antibodies and mistakenly attack your body most people the intestines. (I also have it attack my entire nervous system and brain) Your antibodies can stay flared for weeks to a month or so with just a crumb, so cheating is not a option. The damage to your intestines will cause malabsorption for one, second the damage leads to food intolerance issues random allergies, the more damage and longer you go the narrower your list of foods you body can put up with will normally get, These can go away as you heal by the way in most cases, they will also come and go. I had the lettuce intolerance crop up for a month or two. I still have a whole list of NO foods you can check my profile to keep it simple. This disease if untreated can lead to other autoimmune disease, cancer, lymphoma, and we had a case were one member ignored the diet and had to get a emergency colostomy and a section of their intestines removed. Side thoughts, my body works best with fresh cooked veggies to the point of being mushy, I also find taking digestive enzymes makes it so I do not vomit. I take 2-3x times the dose on the enzymes and it works great. (Jarrow Vegetarian Enzymes Plus, and Papaya Super Enzymes, I take extra bromine when using vegan protein powder shakes.) As you heal there will be some wonderful options open up in the gluten free processed foods department, you will probably lose some of those veggie food intolerance issues after a year or so normally. I have lost a few myself and enjoy some I used to not be able to eat. I will give you the newbie 101 list and a list of potential food alternatives that might give you some hope to browse through.
      https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

        I also post some great recipes in the recipe section.
    • Solid advice. Wish that more people would consider that this might be necessary for some and not entirely paranoid. Could very well be airborne, but most likely culprit is something you're eating. That said, baking, construction/open drywall, farms/animal food and bulk/flour aisles in grocery stores are legitimate worries. I was recently having frustrating problems with random but minor flare-ups, and have eliminated almost all packaged food (even gluten-free) for a bit. It has helped tremendously. I hope that perhaps my sensitivity levels will calm down in a few years, but not being itchy and scabby is worth almost any cumbersome restriction. I think for me the problem has largely been to do with the use of oats in many dedicated factories (even gluten-free oats make me very, very sick). I came to this when lodging a complaint/notifying a company that I'd had an issue with one of their GFCO certified products. I figured that mistakes could happen, and could not imagine anything else I'd eaten that day could be a culprit (had only eaten veggies/rice/meat) so I contacted them to report it. Their response made me quite sure that the lot my food came from was fine from a legal/GFCO gluten-free perspective, but revealed that they make all their gluten-free products on the same line - which include granolas, oat flour etc. When I investigated it a bit more, I realized that many of the gluten-free products that I suspected were causing me problems (but had no real basis for why) were all made by companies that also make lots of gluten-free oat products. Previously, I had only avoided gluten-free products that contained oats as an explicit ingredient, and had never considered that the residues from gluten-free oats could be problematic. Unfortunately, now that gluten-free oats have been legalized in Canada, it is very difficult to find companies that do not use them in some capacity, which is why I axed most of the processed gluten-free stuff. Presumably, because the oats are considered gluten-free, there is no reason to clean the line or employ any allergen food safety practices from the company's perspective. While this may not be a concern outside of those who are super sensitive, it might worth considering if you are still having problems or have a known issue with oats. At the very least, avoiding most processed gluten-free foods (breads/flours/pastas/baked goods) seems to have helped me a lot, even if minor contamination with oats is not the true culprit. I would vouch for mostly sticking with rice, dry beans, root veggies and fresh corn (from the cob) as complex carbohydrate sources for a bit, even though it's a bit inconvenient.   
    • So I previously went to Buffalo Wild Wings and they gave me the gluten-free menu. I asked the waitress if anything is mixed into the fryers somehow with the ultimate nachos, since I read up that they don't switch out fryers for celiac customers, which is fine. She claimed there's no cross contamination happening there, as nothing goes in the fryers. I went back today to find out by the manager that they apparently deep-fry their corn tortilla chips from scratch, so I cancelled my order. But after rethinking, I asked if I could order everything except for the tortilla chips. She came back and told me there's yeast in one of the sauces for the nachos. Yeast is a toss-up, but it seemed to me like they were trying to get me to not order. Either BWW's is lying about their gluten-free menu, or the management was doing everything in their power to prevent me from eating there in order to not have a potential lawsuit. Has anyone felt this way when going to restaurants?
    • Hi everyone! I'm obviously new to the forums, but I'm also new to the idea of celiac/gluten free/etc.  Lemme give you the Cliff Notes version of my journey: 1992: I'm diagnosed with CFS/ME. It sucks and I'm tired and sick all the time. 2014: I'm still tired and sick all the time, so I decide to become a vegetarian. Maybe that'll help, right? I began getting deathly ill when I ate. Vomiting and diarrhea, everything I eat seems to be a problem.  I go to a doctor who runs a million tests. Nothing turns up. In among those tests is a celiac panel which has this result: no antibody detected and no serological evidence of celiac disease. No cause is ever found. I continue to suffer. Later in 2014: I notice that my stomach issues are triggered every time I eat a raw vegetable. I can eat bread or pasta no problem. Fake chicken? Great. Have a salad? I'm dying. This is a problem, as I'm a vegetarian. I nix the fresh veggies and continue to live my life. 2015: I'm diagnosed with Fibromyalgia. I realize that the problem with vegetables is worse than I thought. I can no longer eat cooked spinach, can't have lettuce on my sandwich, and stealing a single slice of cucumber set my stomach on edge for days. I'm becoming hypersensitive to veggies in food and protecting myself from their evil influence; my stomach thanks me. 2017: After a relative peaceful period, the stomach issues are back, worse. So I go to a new doctor (I've moved) and he recommends a colonoscopy and EGD (no labs). This was done yesterday. The full results will of course have to wait for the biopsies to be examined, but apparently there is scalloping "through the entire duodenum".  Doc told my partner that he believes I have celiac and discharged me with orders to go gluten free. Now I'm sitting here alternately considering drinking alone in the dark and throwing things--I guess I'm wavering between the stages of depression and anger on my trip through grief for my lost favorite foods. But here's where the confusion comes in...everything I'm seeing says that I should give up bread and eat more veggies, but veggies make me sick. Does anyone else have this reaction to vegetables? Meanwhile I'm thinking back to the labs done in 2014 and wondering if its possible to have a negative test and still be positive for celiac? Also, what actually happens if you DON'T go gluten free?
  • Upcoming Events