Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store.

Worsening Symtpoms...

8 posts in this topic

Hi Everyone,

This website is an immeasurable tool. I am so glad I found it. I am so confused and don't know what to do.

About a year ago, I tested positive on a blood test for a wheat allergy (along with egg and milk). I believe it was an IgG test or something like that. My doctor said to go off of all three and see if I feel better. I didn't heed her advice, needless to say.

I have since switched doctors because I felt that she knew nothing. In any event, I didn't understand because I wanted to be healthy and thought of those things as healthy. In the past year, I have been sicker than ever. My thyroid is out of control and my new doctor can't seem to get it under control (I've been hypothyroid since I was 16 or so). It seems like no matter what I eat, I can't digest it. Heartburn has become a close enemy of mine. I am either running to the bathroom with loose stools or am so constipated I can't stand it. I have been to the emergency room, screaming in pain about 6 months ago. My intestines felt like they were in huge knots. I had never been in so much pain. I have become horribly gassy to the point of embarrassment...and I've never smelled such an odor. I have gotten so weak, I don't know what to do.

I would go gluten-free if I knew that it would help. But I don't have an appointment with my doctor for another two weeks. What if she wants to run blood work and do a biopsy to test for Celiac Disease? If I am gluten-free, it will not test positive? I already know I tested positive for wheat (not specifically gluten) on one test, and since that diagnosis, I've gotten worse and worse. Do I just say forget all the tests and go gluten-free on my own? I have so many symtoms Celiac Disease, I just don't know if I can wait any longer. I've read all this new info about how people with Hashimoto's thyroiditis are much more likely to be gluten intolerant. My current doctor thinks I've been hypothyroid since birth, but it wasn't diagnosed. I'm just wondering if it has anything to do with it.

Sorry for the long post. If anyone has any input, I'd really appreciate it. I don't mean to be ignorant about this stuff; I just want to do what's best.

Thank you,



Share this post

Link to post
Share on other sites

Ads by Google:

Unfortunately, this is your call. It sounds like to me, even as sick as you are, you don't want to give up gluten unless you have some hard proof it's a a real problem. If that's the case, you need to try to keep eating it at least until the blood tests. If the blood tests are positive I'm not sure you actually need the biopsy, but the doctor might insist since it's the gold standard.

On the other hand, you certainly have some of the major symptoms, including some worrisome ones. If you do have celiac, the fatigue is a possible sign that you're very depleted. This was the problem that put me in the hospital and led to diagnosis.

The allergy tests you had were not the same as celiac blood tests.



Share this post

Link to post
Share on other sites

"About a year ago, I tested positive on a blood test for a wheat allergy (along with egg and milk). I believe it was an IgG test or something like that. My doctor said to go off of all three and see if I feel better. I didn't heed her advice, needless to say."

Why didn't you heed her advice? An IgG reaction is bad, very bad. She told you what to not eat, but you chose to ignore her, and you paid the price. Every symptom you described could very well be allergic. Don't expect sympathy from me, you know what to do, and choose not to do it.


Share this post

Link to post
Share on other sites

Hi there,

Well with you being positive with the blood test is a really good sign I would say about celiac disease. I myself was a half positive and half negative for the blood test and when I did get the biopsy done..It did turn out that I am celiac. Although I still have a lot of problems with digestion and I mainly am running to the bathroom every second it feels.

I just want to warn you that when you do go on the gluten-free diet after you have the proof that you are celiac that the symptoms might not go away for a while. Some people have instant relief...that withing a week they notice a difference in thier systems...then there are people like me..that it's been almost two years and only now am I starting to notice a difference being gluten free. The point is not to tell you that you're going to be sick for years yet...but to tell you that YOU WILL FEEL BETTER. One way or the other some relief will come if you are celiac and you go on the diet. I have IBS as well...or so I am told..and I've been to a few doctors who don't know what is wrong with me other than celiac. What I find really relieves a lot of gas cramps is phasyme ... and then I also take digestive enzymes. HUGE HELP when it comes to all foods. you can get all sorts of enzymes, but all are natural and all will help in some way or the other.

I hope my information helps.

Good luck with the testing.... Gluten free can suck a lot at first..but when you start feeling better, it makes it all worth it. I say this ..even though I am not even close to be a normal person..but any improvment is a great sign.



Share this post

Link to post
Share on other sites
Why didn't you heed her advice? An IgG reaction is bad, very bad. She told you what to not eat, but you chose to ignore her, and you paid the price. Every symptom you described could very well be allergic. Don't expect sympathy from me, you know what to do, and choose not to do it.

I am trying to "choose to do it" now. Do you not see my effort? If I was not trying, I would not be here. I am hurt by your comments. I was simply saying that I don't know if I need to stop eating gluten now or after I have celiac tests (which I have not had).

I don't want you to think I don't care about my health. If I didn't, I wouldn't be here. I didn't know where to turn when my doctor told me to avoid those things. She also said I test "positive" for them, but I might be okay eating them in moderation. I didn't take her as serious as I maybe should have. She also told me to eat a fat steak because my iron was at the lower end of normal, totally forgetting at the time, beef hadn't crossed my lips in years. Her concern was more about dairy than wheat anyway.

I am a nutrition student, and had been a lacto-ovo vegetarian for a couple years (I am no longer for the reason that my doctor said I was allergic to eggs and milk and need a protein source). I felt like everything I knew was wrong. I had been consuming the whole grains (mostly wheat), nonfat dairy, and limited eggs. When I was told that I had a reaction to those, I didn't know what to do. I didn't know where I was going to get my protein. I am hypothyroid and my new doctor also said I can't have soy. I'm not looking for an "out." We all make mistakes. I think you were a bit harsh. I came here for encouragement...not encouragement to continue with old behaviors, but encouragement to change old behaviors. I tried to change, but didn't try hard enough. Geez. And most people who are told by their doctors to do things don't do them anyway. How am I any different? I messed up. I am fixing it now. With a new doctor who actually listens to me. I was never told, "wheat is damaging your insides, stop eating it." I was told I had an "allergy." I didn't understand the severity, if that is the case. You wrote to me as if I'm an idiot who knows nothing. Thanks for the input. If you can't see that I'm willing to give up gluten and dairy and eggs, then apparently I didn't make myself clear. I knew nothing of possible celiac disease a year ago. And if my doctor was concerned I had it, why didn't she test for it? I was tested for wheat, not gluten. From what others have said, it's different. I don't know. I guess I had better watch what I say so others don't slam me and treat me like I'm an idiot.


Share this post

Link to post
Share on other sites

Sriddle 78,

I can understand where you are coming from. When I was first

diagnosed my doctor (GI) told me I had an allergy to wheat.

As a nurse I thought my IgE was elevated. He told me to avoid

wheat, rye,oats, barley, and distilled vinegar. He didn't think and

still doesn't think it is celiac because my gene test, biopsy were

negative and villi were not damaged. When I asked to see the

blood work I found out that The Igg and IgA were elevated. I

started to read everything about what could be wrong with me.

I have come to the conclusion on my own that I am gluten

intolerant. My GI doc disputed this and my family physician knows

even less than I did in the beginning. He wants me to go back

on gluten and dairy, which I refuse to do and his solution is to

treat me with low doses of anti-depressants. I have tried both

Lexapro and Prozac and took myself off of them, My only real

problem is falling asleep, the other symptoms have cleared up.

My advice to you is to try the diet, learn as much as you can,

and listen to what your body is trying to tell you.


Share this post

Link to post
Share on other sites

Shannon, relax!! In your first post, you said the doc told you to go off wheat, dairy, and eggs, and that you "did not heed her advice." That is what I based my statement on. If you know that those items make you sick, then do not eat them. If you do eat them, knowing that they will make you sick, then don't come crying to me. If your new doctor has ordered celiac tests, then you must continue eating wheat, and I sympathize wholeheartedly with your misery. What your first doctor tested you for was allergy, which is an IgE reaction. The treatment for wheat allergy is the same as for celiac: total avoidance. It is very possible that all of your misery is caused by an allergy to wheat, eggs, and dairy. Talk to your doctor about running the celiac tests. If your doc refuses, you can always do the diet anyway. Positive improvement on the diet is a test in and of itself.

And no, your first post did not indicate to me that you were actually trying to make yourslef better. When you ignore the test results, and the advice of your doctor, you deserve to be sick. You obviously did some research on Celiac, why didn't you do any on allergies? Why didn't you at least try the avoidance diet? Do not use the excuse that most people ignore their doctors, I pay mine too darn much to be ignoring what I am told. You say that you are a nutrition student, haven't you covered food allergies and intolerances? I was a daycare provider, and that was required learning just to feed children.

Get your thyroid under control, and stop eating foods you are allergic to. If you still don't get better, then start looking at other things.


Share this post

Link to post
Share on other sites


If you made an appointment with your doctor for the tests wait until then (or move the appointments up) before going glutenfree. While awaiting the results you could try the gluten-free diet and see how you feel. It does take sometimes to become gluten-free but it could make you feel better. Keep discussing it with your doctor. A good thing that helped me was eliminating "everything that made me sick". . .dairy, stuff with a lot of acid, candies, junk. . .and so on. Then I slowly added back things and didin't add something else until I felt good. It was a good system.

Good luck!


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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels.
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum! theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
    • Celiac Patients Could Get Gluten-free Stipend
      Celiac disease is a sensitivity to the gluten found in wheat, barley, rye, spelt and oats that causes an autoimmune response in which the body attacks ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it. Thank You,
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member