• 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.

Worsening Symtpoms...
0

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,

Shannon

0

Share this post


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

richard

0

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.

0

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.

sherri

0

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

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.

0

Share this post


Link to post
Share on other sites

Shannon,

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!

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
      106,421
    • Total Posts
      930,471
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • There is currently not any enzymes you take that will get rid of gluten, they are working on a promising one to reduce symptoms but all others out there right now are a bust and will not help you much if it all with gluten exposure, Celiac is a auto immune disease, your reacting to the proteins of gluten and it is attacking them and your own body.  I do suggest a digestive enzyme if you have food issues in general to help break them down. But this will not fix gluten exposure, reduce damage from gluten, or make gluten eating safe by any means. These current ones on the market are FAD ones target at healthy people and helping them with general digesting of gluten proteins but will not help you if you have celiacs to eliminate gluten reaction symptoms.
    •   Could try causally asking your family to get the blood test done next time they are at the doctors. They could have it and only have minor or no symtoms to it. There is a form of it called silent celiacs with no outward symptoms but it is still destroying your villi and causing your body to slowly degrade. Doing so could shed some light on other issues, make family more understanding to your issues, and help them out in the long run.    I was adopted at only a few weeks old, so my issues run a bit deeper with both leaning about this disease and getting anyone in the family to understand it. Does not help my birth mother still to this day refuses to release updated medical records or accept any kind of contact.    >.> I give advice all the time, I like to feel useful to others, and can be oblivious to others feelings and reactions due to a form of autism called Aspergers.  Bit of a pain, but the feeling of being of use to others is very rewarding even if sometimes confused with being helpful over being a ass or someone overly intrusive.    I just wish others had helped me out earlier with this disease.   PS Anonymous, you keep posting on older threads, ALOT recently. Not a bad thing, just something I picked up on and piqued my interest/concern with how out of date some information might be.
    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
  • Upcoming Events