• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   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
0
kaysol

Does This Sound Right?

Rate this topic

Recommended Posts

I went to my Dr. last week because I have been trying to lose weight for 7 months with no luck (have actually gained 4 lbs). I am working out, tried eating less, eating more (after testing my rmr) etc. I also complained of bloating in my stomach. anyway, he ran all kinds of blood tests. while waiting for them to come back I cut out dairy and was amazed how much better my bloating was so thought I had it figured out. yesterday they told me I am likely positive for celiac. I was in shock. everything I have read does not sound like my symptoms (I know some people do not have any) Isn't weight loss one big symptom (because I am NOT losing weight, believe me!) I got another blood draw for another test (not sure the name of that one) and am waiting on that. The reason I am quesitoning this whole thing is my results were SO high that it seems out of the range even.

My Gliadin AB IGA was 144 and the AB IGG was 111. It says high is over 30, mine is like 4x that high. If mine are really that high wouldn't I be feeling more symptoms or at least be skinny? I feel so overwhelmed right now, I was just diagnosed with a heart condition in January and can't believe I know might have to deal with yet another major lifestyle change. I can't even begin to imagine how hard a gluten-free diet will be, everything I look at has some form of Gluten, how do you do this! I am so upset right now!

Does anyone have any advice on my lab results while I wait for the other to come back - do these numbers sound ridiculously high or do people have numbers like this often?

Any help would be appreciated, I am so lost! (also I did the test while fasting since they were also checking glucose, would this make any difference?)

Thanks!

Share this post


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


Hi, I'm sorry to hear you're so distressed but can certainly understand why! Diarrhea, abdominal pain, weight loss, those are "classic" Celiac symptoms. They are now finding that people with "classic" symptoms are actually in the minority! You do not need to be losing weight or having diarrhea. You can be constipated, have headaches, there is a multitude of symptoms that can go along with this disease. I'm not too sure about the levels that you mentioned, as my doctor tested me and called me and told me my blood test was positive for Celiac. (I had classic symptoms). I went on the gluten-free diet 4 1/2 months ago and the difference is incredible. Yes, it is very hard to be gluten-free but trust me, the results are well worth it. This board is here for you to vent, cry and ask for help. We've all been there and are here for you.

Share this post


Link to post
Share on other sites

I won't help you much with your results either, as I was diagnosed as a baby and don't know about meaning of test results or what they are supposed to be like... But I think that if your results are so high it should mean that your body's reaction to gluten was quite strong, even though you didn't show "classic" symptoms. I understand the shock and I am sorry for you.

I noticed that there is a part of this board called "Gluten-free diet and weight issues" ( http://www.glutenfreeforum.com/index.php?showforum=43 )- I haven't read it until now because I'm OK with my current weight, but after reading your post I looked through some messages posted there and I found out that there is quite a number of people who were diagnosed with celiac disease even though they were also fighting with their overweight. I thought you might want to look through those messages to see if they can help you. Unfortunately, I can't offer any more help, but I hope that this board will help you learn how to change your lifestyle, as it has helped me.

Share this post


Link to post
Share on other sites

I didn't have obvious symptoms (at least not right up until I suddenly got VERY ill) and my numbers were also sky-high, indicating I had had celiac for quite some time with no symptoms. Your doctor is probably doing the ttg now, but with the two readings you have the odds are soemthing better than 95 percent that you do have it. BTW, I know of people weighing 250 or more before they were diagnosed. If you do indeed have it you're very fortunate to have a doctor who knows you don't have to be skinny to have celiac.

richard

Share this post


Link to post
Share on other sites

Thank you all so much for your replies. I am so thankful to have found this board. I would feel so alone without it! No one understands what I am going through. friends are saying things like "well you were never a big bread lover anyway", they have no idea that just about eveything in their cuboards (and mine!) has gluten in it. It doesnt help that I have 2 small children and find it hard enough to cook dinner once must less twice! Also now I have to worry about passing this onto them as well as the worry they could get my heart condition which is also heriditary! I am a mess right now but I'm sure I will learn to cope and be fine.

Did anyone else feel like they were mourning food after they found out? (i really am not a pig, I just enjoy cooking and eating) :P I keep thinking things like "I can never eat so and so again" its so ridiculous and silly but thats where I am right now.

Thanks again for all the support and replies, I appreciate it!

Stephanie

Share this post


Link to post
Share on other sites
Ads by Google:


People don't have to be skinny to be celiac -- actually, many are overweight or obese.....a really skinny, symptomatic person is the sterotypical celiac, but not necessarily the most common.

It wouldn't make a difference if you were fasting--your blood is not going to skyrocket or drop dramatically if you don't eat for a day or two.

-celiac3270

Share this post


Link to post
Share on other sites

My husband was off gluten for three days when he had his blood test. The doctor said that was fine but from what I've read on the message boards he should have been eating gluten up until he was tested. Any insight would be great. Also, how do you find a doctor who knows about celiac? We had to push for him to test for it.

Share this post


Link to post
Share on other sites


Ads by Google:


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
      108,428
    • Total Posts
      941,222
  • Member Statistics

    • Total Members
      66,357
    • Most Online
      3,093

    Newest Member
    ktdidhurry
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Johno,  fellow brit here. Crappy uk medical experience is par for the course unfortunately where this is concerned, so don't expect too much help from that sphere. Although with a positive diagnosis you should be eligible for dietician advice and monitoring of nutrient levels.  First, 4 month in is still early days. If you have cracked the diet and are not suffering cross contamination (v easily done) then you still have at least 2 and maybe 8 months of healing to come. So it's little early yet to be thinking that your celiac isn't responding to he diet.  1. Sleep issues. You don't mention what these are, but yes, celiac is definitely linked to sleep disorders. In fact it's linked with just about everything due to the way it impacts the body. Almost all systems can be affected. You may also find if the sleep issues are neurological in origin that they will be the last to go on the diet. I find neuro symptoms are the first symptom and last to go. Note also that although Gastrointestinal is commonly percieved as the major celiac presenting symptom, this isn't the case. So your not alone in not having major tummy issues.  It's not caused by mentality but it sure as hell affects it.  2. How long have you got? I tested negative so I'm in the ncgs category and some won't even accept that my condition exists. Even understanding of celiac is still developing. Research is ongoing as is levels of incidence. It's up 4 times since the 1950s so something is going on, better testing is perhaps revealing more. you have positive diagnosis, so you have good evidence to keep you strict on the diet. Eat as well as you can. Try to keep gluten free processed foods to  minimum  and eat fresh whole foods where possible. Treat this first 6 months as a one off healing period and help your body as much as possible. Take some good quality supplements, regardless of what the tests are saying. B complex, magnesium and a multivitamin are a good safety net if nothing else.  Read the newbie thread on this site and double check your kitchen etc for possible cross contamination sources. Could be seasoning, shared butter etc. You need to develop a sense of vigilance about this whilst staying on the right side of paranoia! finally, a warm welcome to a good site  
    • This disease is like a chameleon and seems to change symptoms on people and everyone is a bit different, heck some have no symptoms til it almost kills them with secondary issues like cancer, lymphoma, rupturing the intestines etc.
      I did not have ht classic D but constipation, I also had a bunch of other signs that I had grown into and considered normal. My big thing was neurological side of it. I had gluten ataxia where it attacked my brain and nervous system compounded by b vitamin deficiency, I had learned about the magnesium deficiency months earlier and was supplementing for that part of it. Anyway my health was getting bad, tired, random gut pains, brain looping on the same thought over and over driving me mad, bouts of anger and rage. I was running a bucket list before they got it diagnosed.
      Wish it was done earlier my immune system developed other issues like corn allergies, bunch of intolerance then years later learned I had also developed Ulcerative Colitis.

      There are some mental aspects to it, one part is the effects of vitamin deficiency like the b-vitamins, can be very detrimental to you mental health. Various others have cumulative effects or require others nutrients to work right. SO you have to find your balance and supplement til you heal, or sometimes for life. 

      There is also odd fight or flight responses I have noticed from me and others, your body starts to associate gluten and certain foods with discomfort, once off them starting to smell them or thing they might have contaminated your food brings out a panic like fight or flight as you subconsciously attribute that smell, thought, food, etc. with pain and discomfort.

      This disease is really not well understood, contradicitve....hell it is the only disease where you have to poison yourself to the point of causing major damage for them to learn you have it.....like "Here eat this poison so we can see if it makes you sick, but you have to be really sick for us to know it is this poison that makes you sick as it only effects some people"
    • I just quoted a little part but really much of your experiences could be mine. I won't bore you with it all, but chest pains came from 19, herniated disk came at 21, followed by 20 years of sciatic back pain. Depression at or about the same time. Brain fog little later. There was lots more, primarily neurological. Internally I expected to die in my 30s or maybe reach 40.  Nothing shifted any of it until I changed my diet and inadvertently reduced my gluten consumption. I went back on gluten for testing, confident I'd found my cause only to test negative. I did keep a diary however and that helped me and my consultant decide that gluten was off the menu for life.  Couple of things which may be helpful. There is more than one blood test. You may find that one of the others works for you. I never got them all and wonder sometimes if I would have tested positive on another one. You can post your results here if you would like some help in interpreting them. you mentions feeling relief when you ate less gluten. Are you sure you were eating it up to the test? Removing it may have altered the results. Finally, once testing is complete, go properly gluten free even if you tested negative on scope and blood. For some people, they test negative but still react. That could be you and give how closely some of my symptoms match to yours it may be the case. best of luck, you will find this site full of support and useful info. You are not alone in this. matt  
    • Morning guys.  So long story short. Lost 10 kg back late last year. Stress related I believe. ( I Understand this is a big factor with celiacs) Tested. Found anti bodies in my blood. Doctor states potential Celiacs. Have endoscopy. Doctor who takes procedure doubts I have it. Move to London. Move Doctor appointment. Here nothing from Doctors. Fast Forward from December (endoscopy) to July. Ring up doctos asking what my result were as I hadnt heard anything (While eating gluten) Get told "oh, you have celiacs"...........Ridicolous that I wasnt contacted. But anyway thats not the issue.   Fast forward to Now. Gluten Free diet. I have had 1 day I would say in 4 months that I have had super energised, felt great. Sticks in my mind. Had more bloods for all anemia/deficiencies. Everything is fine. Im still exhausted. Every day. My stomach wakes me up 90 percent of the time. I dont have loose stools. Never really have. My mood was severly low. Im really starting to feel like this Celiac is dealt with so primitively.  There is zero sense to any of this. I have tried everything. I watch these shows of people talking like they are dying. Its just painful, everything about it.   1)Wondering if anyone here has had the sleep issues. Im really starting to think this disease is entirely caused by mentality. 2) Thoughts on the contradictive studies/opinions of this disease?    
    • Getting a celiac disease diagnosis is shocking.  Expect to go through all the stages of grief.  Your best defense is to learn how to read labels, avoid cross contamination and consider eating as few processed foods for a few weeks.  It may speed healing (wish someone would have advised me to do so).  You might keep a food journal because celiacs tend to have leaky guts (this is a real thing) causing food intolerances that often resolve with healing.  Lactose intolerance is probably the most common.  You just have to experiment.   The bottom line is that soon you will feel so much better!  Just be patient.  It took a while for you to get sick and it will take time to recover.  😄 If you need to vent, ask a product question, or whatever, we are here to help!  
  • Upcoming Events