• 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.

Confusion With Diagnosis
0

4 posts in this topic

Recommended Posts

KChipley    0

I am so confused and need help!! I had a biopsy done on March 4, 2013. Immediately after the procedure, the Doctor came in the room and mentioned that he thought it could be Celiac Disease but wasn't positive yet. He took some blood and sent me home. On March 13, 2013, I received a phone call from the Gastroenterologist office confirming that I do have Celiacs. The nurse told me that I would need to begin a gluten-free diet immediately and she mailed me some more information on Celiac Disease and eating gluten-free. I stopped eating gluten that day and even went as far as purchasing gluten-free makeup/shampoo/lipstick etc. I went in for a follow-up appointment with my Doctor last week and shortly after walking in the room he said, "From your biopsy results I think you MAY have Celiacs. Do you know what that is?" I WANTED to say, "Yes, I know what that is because your office told me I had Celiacs so all I've done for the past month is read about it!!" But I just said that I did know what it was, and I mentioned that they had called and confirmed that I had it. He said that IF I do have Celiacs, it's only a "tiny bit" because it only partially showed on my biopsy and he wants to run blood work (he didn't mention the blood he took in the hospital) to "confirm" whether I have celiacs or not. He told me to go back to eating gluten for one week and then I will have the blood work done that will confirm this possible diagnosis.

 

Here's my issue. Everything I am reading online says that blood work is done FIRST, and that the only certain diagnosis is biopsy. Is this true? I've also read that if you're following a strict gluten-free diet, it takes way longer than one week eating gluten for anything to show up in a test result confirming Celiacs. I am really frustrated with this Doctor and his office. Why did they call and say I definitely had it and to go gluten free immediately if my test results were inconclusive? 

 

I started eating gluten again the day of my appointment, 4 days ago, and I feel so sick. All of my symptoms that had gone away since going gluten-free are back. I'm going back  to eating gluten-free and I'm going to call the Dr. office on Monday to see if I can get some better clarification.

 

Any advice/thoughts would be greatly appreciated!!! I am so lost. 

Share this post


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


mushroom    1,205

Yes,  it does seem as if in your case things have been done a little bass ackwards.  Positive blood, confirming biopsy is the normal procedure.  Perhaps your doctor forgot you had not had the blood tests done, and the blood taken at the hospital was to test for nutrient deficiencies.

 

Nonetheless, celiac is like pregnancy in that you can't be a "little bit" celiac; either you are or you aren't.  You need to get a copy of the pathologist's report on the biopsy and see what he had to say.  It could be that you had inflammation and suspicious lymphocytes, but not actually any involvement of the villi, which is the normally accepted positive sign of celiac, the other two being potential precursors.  If he took several biopsy samples and it only showed on one of them, this is not unexpected because the disstribution is often patchy and is a reason that sometimes people who actually do have celiac will show up as biopsy negative.

 

Do get a copy of the pathology report and let us know what it says.  And by the way, welcome to the board!

Share this post


Link to post
Share on other sites

Yes get a copy of the pathologist's report.

I always ask for copies and found stuff on them that a specialist wasn't telling me that was important,

and even mistakes on other reports.

 

Also get on the horn (the phone) to find out what blood tests were done and where are the results.

Sometimes the labs can forget to send them and  your busy doctor forgot about them. :wacko:

The lab might say they can't tell you, so say: "that's fine but can you send a copy to my PCP?"

Then get a copy from your PCP.

Share this post


Link to post
Share on other sites
KChipley    0

Thanks for the replies!! I'm definitely going to start calling on Monday morning to see if I can get a little more information. I will get copies of the forms and see what I can figure out. I have been so frustrated with him, I kind of want to try to get a different doctor!

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
      938,581
  • Member Statistics

    • Total Members
      65,816
    • Most Online
      3,093

    Newest Member
    Rossy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Due to the nature of the kitchen on those kind of environments it is very hard to not have CC. They are obviously not confident that they are 100% gluten-free. Honestly I would not eat any any place like that due to CC issues. I had my share of so called gluten-free earlier on with my celiac in the beginning after dia. Yeah I only trust 3 places right now not to poison me. 2 have just 1-2 items I trust, I have talked to the managers and they even showed me how they are fixed (conveyor oven, that they place disposable foil sheets on the conveyor and I can have fish, veggies etc. placed on it and roasted then straight to the plate). I would not trust any kind of bin kept food, boiled, dipped, fried, or anything like that from a fast food or chain join if I was you. Many places the chef will on a whim add a bit of something to a sauce, roax, or dish to adjust consistency. (I am a chef and this is how your taught) in most cases a bit of a nuetorl flour (wheat) or starch (corn) is added......so in higher end restaurants you get this issue. Avoid eating out unless the entire establishment is gluten-free or you know how something is fixed. I might suggest a NIMA sensor for gluten testing if you insist on eating out at those kind of places, Most of us just bring our own meal prep, protein bar. or meal replacement shake for these problems. UPDATE Further research, https://www.buffalowildwings.com/Documents/BWW_Nutrition-Allergen_Info.pdf They do not use separate fryers, NOTE many of the gluten containing products potato wedges, wings, nuggets etc are all fried....so anything fried would be gluten contaminated. Considering the nature of this business....I would consider everything on the menu off limits, all their salads even seem to contain wheat?! I really would just stay away from BWW
    • 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?
  • Upcoming Events