• 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Do I Need A Second Opinion?
0

6 posts in this topic

I was diagnosed on Tuesday being positive for celiac disease. They based this on a blood test alone. I have read many of the post and replies and can relate with so many of the stories and have the same symptoms. 10 years ago I was diagnosed with IB and been trying to deal with it and keep it under control. Now they say I have celiac disease, do I need a second opinion?

Angela

0

Share this post


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


Hi Angela,

Your question about if you need a second opinion or not really depends. Are you questioning the validity of the bloodtests? Are you thinking that it might be wrong? It is a slim possiblity, but if you have symptoms and have previously been diagnosed IBS then the likelyhood of it being celiac disease is pretty high.

You might want to get a few more follow-up tests to check for nutritional deficiencies, and the only reason you would need a biopsy is to either have it as a pre-gluten free reference to compare with a future biopsy to check for improvement, or to convince a doctor that you do have celiac disease. If you doctor is willing to diagnose you based on the blood alone, then that would be okay in my mind. Of course the next doctor might tell you that you HAVE to have the biopsy to get a diagnosis. It is up to you to decide what is best for you.

There are problems with both the blood test and biopsy, but usually positive blood tests mean Celiac. It is the negatives that can often be false. It is like this: a positive test means positive for the disease, but a negative does not always mean negative for the disease, it can mean that you are not advanced enough with it to produce antibodies in the blood. The biopsy is not fail proof either. The damage can be spotty and it takes a skilled (and lucky) doctor, taking many tissue samples in the right places, to get an accurate diagnosis. If the doctor doesn't take enough samples and fromt he right places then you end up with a negative biopsy and are back to the IBS diagnosis.

If you feel the diagnosis is accurate, and you feel better off gluten, then I would go with that. But if you feel like you need a second opinion and a biopsy, then you had better stay on gluten while you seek those things, since going off of gluten will alter future test results.

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Thanks Mariann,

The test are probably right. I have only been gluten-free for 2 days. Ill give it time.

Angela

0

Share this post


Link to post
Share on other sites

i need some help,,,,,, i have had 2 blood test and both came back pos for celiac disease one biopsy came back pos and the second after one month off the gluten free diet came back neg. What do i do?

0

Share this post


Link to post
Share on other sites
:unsure: i would go with the blood test--you may be gluten intolerant, maybe not full blown celiac yet and that is good--staying gluten-free will keep you from getting full blown celiacs--many times the blood work comes back celiac and the biospy comes back negative--i have read that so many times--gluten-free cant hurt you, but gluten may do damage you cant fix--i say, go gluten-free---deb :D
0

Share this post


Link to post
Share on other sites
Ads by Google:


ys2kera, I'm not really certain what you're asking for help about. With 2 positive blood tests and one positive biopsy, you definitely have celiacs. My guess is that the follow up biopsy either was taken from an undamaged area or your time on the gluten-free diet has helped to heal you significantly enough that even with a single month off it, you are still far better off than you were. There's been much discussion on how long is needed off the diet to show damage. Obviously for you, one month isn't long enough (which isn't to say that it isn't hurting you in other ways.) Keep going gluten-free! It's working for you!

0

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
      106,463
    • Total Posts
      930,695
  • Member Statistics

    • Total Members
      63,887
    • Most Online
      3,093

    Newest Member
    GenieBelle
    Joined
  • Popular Now

  • Topics

  • Posts

    • Ugg, tell me about I thought I had bad gut bacteria for years. Carbs would just make be bloat and distend, sugars, rice, any kind of grain. Figured out in Feb, it was UC and that the sugars in carbs caused flare ups....I realize I am blessed I can nuts, I eat nut based breads, muffins, cakes etc, using stevia, monk fruit, and xylitol for sweeteners since they do not trigger the flare ups. >.> I am also addicted eating sugar free jams made with extracts, and a universal pectin that reacts with calcium water instead of sugar so I can use monk fruit to sweeten. (Cheaper to make this for my fruit cravings to buying sugar free jams)    I also found a noodle by miracle noodles that is carb free they also make a rice sub...I use them in recreating dishes I used to eat all the time. NOTE the fiber in them is not tolerable to some people. But might look into it as a alternative. I think I did a post not to long ago about different forms of noodles and how to make them or get them for those with similar issues one of hte more intiruging ones is using eggs or egg whites mixed up and cooked on low eat in a pan into a thin sheet then cutting into noodles or using nordic wear microwave plates to make them. .....I recently found you can mix konjac flour, eggwhites, and hemp protein, up pour into one of those plates and cook into a tortilla. check my profile for my food issues lol list is huge, at least you can eat meats?
    • Hi guys,

      I am newly diagnosed celiac. I found out about a week and a half ago, and have been gluten free for 5 weeks (I stopped after the biopsy was taken). I never really suspected celiac, so it was quite a surprise, but when I started reading about it it made a lot of sense in terms of symptoms etc. 

      I am 34 yr old female, my main symptom was lack of energy for as long as I can remember, blood tests only ever showed low iron (not quite anaemic) but supplements never made a difference (now I know why!). For the last 5 years I have also had constipation, bloating and gas, but I put it down to stress or bad diet and if I am honest because it was a bit of an embarrassing issue to talk about I became complacent. 

      As this is all very new to me, I feel like I have so many questions so thought I would put some here and if anyone has any input or advice from their experience that would be great! I will probably also post more in depth questions in the relevant sub-forums - For those in the UK, how long did it take you to speak with a dietician. The letter with my diagnosis was sent on 12 April and said I had been referred but I haven't heard anything - I am interested to know whether other celiacs/strict GFers ever eat foods which say "may contain traces of..." or "made in a factory which processes...." etc. So far I have avoided anything which says "may contain" or "not suitable for celiacs due to..." but I did eat something which said "made in a factory" (Walkers crisps) as they were the only option but then I felt guilty after! -  What procedures do you take when eating out, i.e. do you only go to places which are certified by Coeliac UK  (if you're in the UK), do you find speaking with the waiter etc actually helps? I have eaten out a few times since being gluten-free and feel like I am being a bit difficult when I bring it up and that they don't really understand. I am lucky to be in London so there are lots of certified restaurants, but even in Pizza Express I didn't think that the waiter really understood. 

      - For those who had energy/tiredness problems before, how long did it take you to notice a difference? The only difference I have so far noticed is I am now more regular toilet wise and have had very little bloating/gas.

      - I have always had low iron which is most likely due to celiac but also as I don't eat meat (I do eat fish), I am hoping now that iron supplements will help now so have been taking the gluten-free Floradix for the last week. Anyone noticed a difference in this after stopping gluten?

      Thanks anyone for taking the time to read, and feel free to put any general advice you have

      Rachel 
       
    • BOBS RED mill makes an all purpose flour with no rice  try Quinoa flour  buckwheat flour tapioca  chic pea flour coconut flour almond meal ground into a flour  flax meal all these things make great " toast"  and healthy alternatives to too much rice flour yummy
    • Oh yeah. I'm 6 months in and still have bad days, even though I know I'm not eating gluten. It takes a long time to heal. I have been on here a lot in the past 6 months venting because I didn't feel good. I just posted today about how tired I still am. Everyone has basically said the same thing - give it time. Be patient. It can take a long time. Some people said it can take a year. Hang in there.
    • Ok, so I have another question for all of you professional Celiacs. I read an article recently that talked about a study that was done on people with Celiac's disease, which said that some of them (a small number) had high levels of arsenic in their systems because of all of the rice products that they eat. Now, I don't eat a ton of rice, but we do have gluten-free pasta a couple times a week, my son and I like rice Chex, and I know there's brown rice flour in the pizza crusts I use and in the gluten-free bread that I eat. How worried about arsenic poisoning do we need to be? I'm not downing rice at every meal but I do eat it daily, I'm sure. I rarely eat rice, rice. Usually it's the rice flour that's in things. Is this one more thing to keep me up at night? Because now I'm like, "Oh this is great. I'm trading gluten for arsenic." I need to eat carbs. If I just eat fruits and veggies and meat I'll lose weight which stresses me out. I want to be able to eat toast with peanut butter and eggs but I worry my toast is killing me. Am I being a little dramatic.
  • Upcoming Events