• 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.

Do I Really Have Celiacs?
0

7 posts in this topic

I'm not getting enough answers from my doctor, so I was hoping for some help here. Thank you in advance for reading.

So to start, I've been having pretty regular gas and bloating for almost 2 months now. My stomach gets really large and looks like I'm pregnant and causes me a lot of pain. It seemed like it was out of the blue when I had my first stomach/intestine ache. I took 2 tablets of TUMS and thought that would cure it, I usually don't have any indigestion problems so I thought it would clear right away. I took 2 more tablets of TUMS and still, I had a burning, indigestion-like feeling. I thought it just to be some gas and that going to the bathroom would clear it up. A few days later, I had the same feeling, gas and bloating. I have never had any issue with gas in my life! I've been to Kaiser many times now and had a variety of tests. My first doctor just wanted to diagnose me with IBS. I took some knock off Pepcid (Peptid?) OTC for a week but I still had the same symptoms. I had blood in my stool at least once that I've encountered but for the most part no diarrhea or constipation. My second doctor thought I may have Celiacs and I had the blood test TISSUE TRANSGLUTAMINASE which I will post next:

TISSUE TRANSGLUTAMINASE IgG (my test results)1.78 (normal range) = < 0.90

Tissue transglutaminase IgA (my test results)0.38 (normal range) = < 0.90

This doctor at least got back to me with an analysis and thought it might suggest that I have celiacs. I have not been eating gluten, or much of anything really. I haven't felt hungry for over a week, mostly because I get lots of gas soon after eating. I vomited today after a bowl of fruit and a few days ago after some ice cream and a frozen dinner, both of which I checked for gluten or any gluten additives. It just doesn't make sense. I'm hoping to get a biopsy to know if I have it for sure, but getting an appointment has been troublesome. I'm 22 and been eating bread and yummy cakes and cookies all my life. I'm really depressed thinking I cannot eat the same way anymore but I'm trying to be gluten free since my stomach just hasn't been the same for 2 months. This is really ruining my life and is causing me a ton of stress because I have to go back to college soon and I'll have to deal with this very limiting diet. I feel sick nearly every day with stomach pains and get only minimal relief trying to push out the excess gas on the toilet. Do my test results really indicate I have the disease? I realize the number is higher than the normal, but am I highly intolerant or just mildly? There is no one in my family that I know who has this. I'm just very wary because there are so many things that gas/bloating can be and I don't want it to be anything more serious. My urinalysis showed a high level of protein (70mg/Dl) and moderate amount of LEUKOCYTE ESTERASE (aka white blood cells). I don't know if these are also a result of my possible celiacs disease, or if it indicates something different. My blood also had a higher level of white blood cells (13% Eosinophils). These tests were never addressed by my first doctor and I'm thinking I may have parasites. According to an article I read, Giardia, a parasite in the small intestine, can cause a wheat allergy.

Any insight?

0

Share this post


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


First, you likely DO have celiac disease. A few other things can elevate TTG though. Your doctor should do additional bloodwork- a full celiac panel that includes Anti-Gliadin and Endomysial antibodies. Giardia will not cause an elevated TTG- that is a sign of auto-immune activity, and 90% specific for Celiac Disease.

It is critical that continue eating gluten right now though. If you stop, your body will stop making antibodies and your tests will show a false negative.

You will likely be referred for a biopsy. You need to continue eating gluten until after the biopsy. The biopsy looks for damaged villi, which will heal quickly on a gluten free diet. If you are not eating gluten, then again, you may get a false negative biopsy.

It is very likely, given your symptoms and the positive TTG that you have celiac disease. You need to start thinking of yourself as one and do all you can to educate yourself. It is difficult at first to give up the yummy foods we have grown to love. No one will argue that. But there is an entire world of delicious foods available that you CAN have. In the beginning, I thought gluten-free cakes and cookies all tasted like sand, and most store bought ones do. But I have learned to bake fantastic gluten-free ones that no one would ever know were not "normal" it just takes practice.

Having Celiac Disease is not the end of the world. For me, it was the beginning of a whole new life after feeling sick and tired for 30 years. I am grateful every day to finally be diagnosed. Feeling well feels wonderful.

Please take some time to read these boards. You will learn more here than what most drs know about Celiac. And welcome.

0

Share this post


Link to post
Share on other sites

You might have celiac. It doesn't sound like the doctor gave you the full celiac disease blood antibody panel.

They usually test for total IgA also, as some people don't really make IgA cells.

Since you are already gluten-free for a couple months though, it won't do any good to go for more tests. Except may be total IgA to know if you make it or not.

If you want to get test for celiac antibodies, you need to eat gluten for 2 or 3 months before testing. I think it is simpler to just go gluten-free for the same 2 or 3 months and see if you feel better. But some people do want a formal diagnosis.

http://www.csaceliacs.info/diagnosis_of_celiac_disease.jsp

CSA Diagnosis

*************************************************

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

How bad is cheating?

*************************************************

0

Share this post


Link to post
Share on other sites

gluten-free in DC, I think you misread the OP's post. I think she has only been gluten-free a few days it sounds like. Am I mistaken?

0

Share this post


Link to post
Share on other sites

gluten-free in DC, I think you misread the OP's post. I think she has only been gluten-free a few days it sounds like. Am I mistaken?

Yes, for a few days as best as I can. My mom accidently bought some ice cream that had gluten in it which I ate. So I feel that I haven't been perfect. We're still adjusting to checking every little thing that goes into my mouth. Heh. I'm still not feeling well, I don't know how long it takes to recover from accidently ingesting gluten.

0

Share this post


Link to post
Share on other sites
Ads by Google:


Well that is good. Just make sure you start eating it again right away until all of the tests are done. And then hopefully going gluten-free will have you feeling better soon!

0

Share this post


Link to post
Share on other sites

Right you are Mitzi, I misread indeed. Thanks for catching that! :) I agree, getting back on gluten now is the thing to do so testing can be done. It's much easier to do the testing before going gluten-free. A 3 month gluten challenge can be pretty rough to do later on.

Ker0Pi,

Recovery and healing from damage is unique to each individual. Some of us get better very quickly, other people it takes longer. Getting better can take weeks, months or years.

Most of the time though a glutening after you are on the gluten-free diet shouldn't affect you for more than a few weeks. But it varies a lot by person, it could be more time. After going gluten-free people tend to become more sensitive to gluten or maybe they just notice the effects more. So minor amounts of gluten from cross-contamination can make us sick. That's called being glutened.

Some schools have plans in place to help students with food allergies, so you might want to check in on that.

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
      107,377
    • Total Posts
      935,762
  • Member Statistics

    • Total Members
      65,064
    • Most Online
      3,093

    Newest Member
    CleoTheLeo
    Joined
  • Popular Now

  • Topics

  • Posts

    • Update: I have been taking Chanca Piedra (specifically, Royal Break-Stone, by Whole World Botanicals) on an empty stomach in the morning for the liver-gall bladder and surprisingly my lips are almost normal. I know the peeling lips may be caused by different issues but I hope this info helps someone.
    • Hi Cristiana, I'm so sorry that you are still not feeling well.  When do you go back to your Dr? I wish I could help more, but it's so hard to know what was what when I was on the PPI.  I was diagnosed with celiac and h. Pylori on the same day so I was already feeling awful.  Then I was put on 2 antibiotics with the  PPI.  I do remember feeling terribly nauseous, but just assumed it was the antibiotics.  When I started tapering, I still wasn't feeling well.  It really took months before I started to feel decent.  But I assume that it was the celiac. I really hope you start to see some improvement...((((hugs))))
    • @scorpio it has now been almost 2 years and I am curious if you ever found something that worked for you. My boyfriend suffers from EC as well and I am desperate to find a resolution for his sake. He's been dealing with it for over a year now and it is taking a toll on his work and social life.   Any updates would be helpful
    • I am going through the diagnosis stage as well. My family has strong history for celiac disease, and while I always had discomfort and other symptoms ( some of which i didnt know about) I wasn't tested until recently because I was DEATHLY afraid of needles. The results are highly positive but I am still getting a biopsy in early August. From what I have learned about it is that the endoscopy is beneficial to looking for not only signs of celiac but also other diseases that have similar symptoms to celiac. Because of your mixed result it wouldn't hurt to get a biopsy but it really is personal preference. I understand what you are going through and didn't like the idea much either but I really think it is something that can help you in the long run. P.S. There are lots of testing being done for new medications or other ways to "cure" celiac other than a gluten-free diet. It is my understanding that this can only be covered by insurance with a confirmed diagnosis (biopsy) but I don't need to get into that. The bottom line is that a biopsy is confirmatory especially since the doctors could see in the intestine, so to me, I feel better knowing that there's no chance of going gluten-free for nothing.
    • Hi Everyone!  Thank you for all your responses!  This site is so helpful and I appreciate everyone who replied to my post.   I was able to get an earlier appt with Maureen Leonard who was absolutely wonderful like you all said and after more testing and even a genetics test, my son now has a diagnosis of celiac disease.  He's been gluten free now for a few weeks.  He is doing very well on the diet so far.  He does seem to be sleeping better which was always a problem since he was an infant, so that is a good sign!  We test in 3 months and I hope that his iron levels go up. 
  • Upcoming Events