Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Still Sick, What Do I Do?
0

22 posts in this topic

I thought that it might be something I've eaten, so I posted a couple times about certain products. Are there other non-gluten-free things to cut out?

0

Share this post


Link to post
Share on other sites


Ads by Google:

When I had the enterolab test done, I was told that since I have both genes I am more predisposed to not only celiac disease but also microscopic colitis and other autoimmune syndromes. So, yes you could have something more than Gluten Intolerance...

Have you cut out dairy and eggs? You might try that if you are eating them and see what happens.

0

Share this post


Link to post
Share on other sites

Smith, it sounds like you really need to see a gastrointestinal doctor no matter what. Your situation sounds complex and professional help is in order. I wish it were simpler and possible to suggest something here that would help you, but that is probably not feasible and so not in your best interest. Just my opinion and good luck to you!

0

Share this post


Link to post
Share on other sites

Go to a GI.You may have more serious issues than Celiac Diesease.

I was Gluten Free for 5 months( after + blood work and + biopsy)- felt worse than ever until I was put on Prednisone.

My GI ran a IBD test and it came back positive for Chrons. I feel better now and have gained back 10 lbs.

I still can't eat Soy,Dairy,Corn, and Gluten.

Also Fruit bothers me BIG TIME. Fruit Juice is even worse, one sip and I feel like I'm being stabed in the stomach. And yes the juice is gluten-free.

All I eat is Rice,Beans,Veggies,Chicken,Fish and once or twice a week Eggs. Boring but effective.

0

Share this post


Link to post
Share on other sites

With those symptoms you should really see a GI doc.You can certainly have other serious conditions in addition to the celiac disease,or perhaps as a result of it.In reference to the heartburn,this is not something to take lightly.When they did an EGD and discovered I had celiac sprue they also discovered I had a condition called Barrets Esophagus which can be related to acid reflux and heartburn and is a significant risk factor for cancer of the esophagus.They take it seriously enough to check it with an endoscope every year.I also had severe abdominal pain during a crisis period that led to diagnosis.My original GI doc was skeptical about the sprue as a source of the pain and surmised that it might be referred pain from the Barrett's,but he wasn't sure about that either.Apparently nothing is too clearcut when it comes to the GI tract.I would advise seeing a doctor sooner rather than later with those symptoms.

0

Share this post


Link to post
Share on other sites




I think you should go and see a doctor for sure, I hope you get to feeling better soon and find out what is wrong with you. Also I know it has been in the media lately to be careful when eating fish with high amount of mercury. tell your doctor that you have been eating a lot of fish, that could make you very sick.

get well soon

0

Share this post


Link to post
Share on other sites

go to a GI doctor right away!

0

Share this post


Link to post
Share on other sites

Thanks for all the replies.

0

Share this post


Link to post
Share on other sites

Is there any way you can call your doctor? I would be concerned about the stomach pain so amny things can cause it.

I have GERD (reflux)and I know that anything acidic is bad. Also tea, coffee and chocolate can cause flareups even if decaffinated. Right now the liquid I drink is water.

0

Share this post


Link to post
Share on other sites

i had abdominal pain and they did an endoscopy and other stuff it turned out that i had an ulcer...

might want to ask a dr. to go through a similar procedure

0

Share this post


Link to post
Share on other sites

If I had that much pain you couldn't pay me to wait until September! Even though it will not be the doctor you want it to be, see a dr. now. Why wait and suffer? They could at least give you something for the heartburn.

0

Share this post


Link to post
Share on other sites

Thanks for the advice

0

Share this post


Link to post
Share on other sites

I hope everyone gets a chance to read this. I am new to this site, and board. I actually came here to find a doctor... but after reading your post wanted to strongly -- STRONGLY-- reccommend the Specific Carbohydrate Diet. It may be that you are a Celiac with many other physical problems making you more sensitive to not only "gluten", but more specific ingredients as well. Reeses Butter Cups are NOT completely gluten free, they have so many added starches in them that all ingredients are not completely listed. Dont think "oh such a 'small' amount wont hurt me". Sometimes you can eat an entire loaf of bread and feel fine... and then a month later take ONE tiny bite of a bagel and be sick for two days. Dont underestimate the sensitivity of your tummy!

The SCD diet is a miracle. I, too, was diagnosed and lived gluten free for years, but pain persisted... and tests came back "okay". So what was the problem?

I read this website: http://www.breakingtheviciouscycle.info/ and then bought the book, after only three days I was completely symptom free! It is alot more specific to follow than a gluten free diet, but many recipe resources and very healthy. I even lost 20 lbs in 3 weeks... hard for someone with hypo thryoid [ahem... disease of the thyroid brought on by undiagnosed autoimmune disorders- ie; Celiac]... I would check that out.

please, you and anyone reading this... talk to your doctor and read this website... I challenge ALL Celiacs to just please try this diet for ONE month. fatigue = gone, pain= gone.

no rice, no rice flour, etc... just read.

www.breakingtheviciouscycle.info/

Sara :D

0

Share this post


Link to post
Share on other sites

...I don't know about that....I mean, celiac disease cuts out a lot, but then, when you cut out basic things like corn, arrowroot....I mean, these are the only substitutions we have for wheat and barley.....it's hard enough to find out if foods are gluten-free, but when you then have to check labels of the gluten-free foods to find things that are wrong with THIS diet?....I mean, I don't make decisions for others, but personally, I think that sounds kind of crazy.....

-celiac3270

0

Share this post


Link to post
Share on other sites

Hey- that's all up to you. No offense but I spent 2 years in complete agony. PICK YOUR BATTLES... corn chips and brown rice? constipation one week... then diahrea the next, dimobilizing pain, fatigue? This diet is very specific, but NO worse than gluten free! All you are doing is further elliminating starches and complex carbohydrates. And how much do you wanna bet you cheat every once in a while? I do. Lets not lie to ourselves. Oh- a tiny bite of that yogurt wont kill me.

I have NEVER felt this healthy in my life. I know how hard it was at first to go after this diet in the beginning but I was willing to try anything. I understand how limited you feel. But anyone else willing to go for it, I highly recommend it.

I am only 24 yrs old, cynical myself and not one to be all about "Wholefoods" and farmers markets, vitamins, bla bla bla.

But I wouldnt change anything about this now. I feel perfect. I feel terrible if your pains and symptoms persist. Maybe try this for a week? There is still SOOO much you can eat if you get a yoghurt maker:

http://www.scdiet.org/2recipes/indexa.html

see?

and ps. if anyone is in the Washington DC/Baltimore area, let me know if you know a good specialist! thanks!

0

Share this post


Link to post
Share on other sites

Sara, I'm glad you figured out why you were still feeling bad after being gluten-free. Please don't assume that all celiacs are in the same position you are in. Many people who post to this message board do so when they are having a problem, not when they are feeling well. You may want to amend your recommendation that all celiacs try eliminating all grains from their diets--I have NO continuing symptoms, and contrary to your statement, I NEVER cheat. I have absolutely no reason to eliminate anything from my diet, as I am fit as a fiddle, and feel fantastic. If somebody asked me what I eat to stay this way, I would tell them, but I would never challenge anyone to try my diet for any length of time--food is WAY too emotional an issue for celiacs, and it is hard enough for most people to adapt to living without gluten. I'm familiar with the diet you mention, and I think it has some real merit. I just don't think everybody who has celiac disease needs to be on it. Again, let me congratulate you on finding something that works for you.

0

Share this post


Link to post
Share on other sites

Interesting! I just read Gottschall's book, 'Breaking the Vicious Cycle' where they elaborated on the SCD. I found it fascinating and was thinking of trying it myself.

0

Share this post


Link to post
Share on other sites

Hi, Like Sara suggested, I think you have further food sensitivities. I went off gluten and dairy and rice and corn and soy. I got a similar reaction when I ate corn or rice as I did when I ate wheat gluten. Once you eliminate the gluten you will notice that other foods affect you adversely and these need to be eliminated also.

Tsomo

Thats not "crazy" its just common sense. If something gives you symptoms dont eat it.

0

Share this post


Link to post
Share on other sites

By the way, let me just say that I have a "gluten reaction" when I eat soy or corn, I'm not sure which yet, since I've only recently added them and did so at the same time--serious allergic reaction, hives, diarrhea, stuffy nose, etc. I'm seeing an allergist in two weeks. The illegal foods on the SCD that aren't soy or corn related haven't given me any trouble...yet! One thing I've noticed since being gluten-free, and I'd like to know if anyone else has had the same experience, is that I've become more sensitized to potential allergens as time goes by. Before going gluten-free, I used shampoo containing hydrolyzed wheat protein with no problem. A few months after going gluten-free, it made my scalp tingle uncomfortably. A few months after that, it made my scalp BURN horribly. Just putting it on my skin for a few seconds leaves a nasty red mark!

I think that before I went gluten-free, my immune system was overwhelmed with gluten, and now it has the opportunity to weird out over other stuff. Soon I'm going to be down to not too many things on this diet of mine! But I know you guys have great suggestions for recipes and lots of encouraging words, so I'm not going to worry about it...too much. Except that I only eat three things that have more than two ingredients, and if I'm allergic to soy or corn or both, it will wipe out two of them! Sounds like I'm going to have to expand my menu big time...

0

Share this post


Link to post
Share on other sites

Dana- you're right... food definitely is an emotional issue. I have found in being with a few Celiac support groups that the "food issue" drives most of us insane and is 80% of the daily struggle with Celiac Disease. Not 'EVERYONE' who has celiac disease needs to go on the SCD diet. But for those, like me, who have continued to experience painful symptoms while gluten free, its an easy way to find out what else you're sensitive to. Alot of gluten-free recipes and goods contain high amounts of rice and corn starch, which I have discovered my system cannot tolerate- just within 2 weeks of the SCD diet. My suggestion was not geared towards Celiacs who are doing well gluten free, or have already found the solution. Smaller things such as Xanthum Gum, fruit skins, corn syrup, fructose and dairy products followed in the discovery.

Not only am I able to start adding things back in now, but I feel so much more educated on product information, cooking, and label-reading. Even if you dont go on the diet, the book is educational to read because it talks about the relationship between bacterias in your stomache and the immune system.. and how it all cycles back to the brain.

It seems that the only thing i struggle with now is still, the ongoing, restaurant gatherings with freinds! And those who are not too sensitive to my situation. But if thats all I have to worry about now, I'm thankful.

Good luck to everyone!

Sara

0

Share this post


Link to post
Share on other sites

Will following the SCD eliminate the need for the Elisa food test from yorkallergies? I'm thinking of doing that when I get some money set aside.

0

Share this post


Link to post
Share on other sites

Sara, don't you think it's ironic that I wrote how I didn't think I needed to be on the SCD, then I started having reactions to soy and corn?! How funny! That'll teach me! I did a "soy challenge" last night--ate some grilled tofu, it was so yummy--and I started to break out in hives in 15 minutes! I downed some antihistamines fast, and slathered on the cortisone. Today I feel hungover and my gut is, shall we say, not happy. But I'm relieved to be narrowing down the field. I will try the same thing in a few days with corn. Really hoping I'm okay with that. My saga continues...

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
      104,364
    • Total Posts
      920,549
  • Topics

  • Posts

    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
    • Hi Beachgrl, We have had members with microscopic colitis before, usually in addition to celiac disease.  Have you been tested for celiac disease?  The reason I ask is, it is much better to be tested for celiac before starting the gluten-free diet.  The primary tests for celiac are to detect antibodies to gliaden in the bloodstream.  Those antibodies start to decline when a person stops eating gluten, so the tests become useless. There is no reason a person can't have more than one digestive system disease.  So it is smart to be tested for celiac disease if you can get the testing arranged.  Any change in symptoms after stopping gluten is an indicator that gluten is causing a reaction of some kind.  It could be celiac, or it could be non-celiac gluten intolerance, (NCGI).  There aren't any reliable tests for NCGI yet. Welcome to the forum!
    • I have microscopic colitis. Having a bad flare of D.  On Budesonide for first time for this. It's helping some- only on it a week. Do you think gluten free would help even if tested negative a few years ago?  Was gluten free yesterday and no BM changes. Even had cramps this AM that wasn't really having before. Thank you!!
    • Do you want to tell us the name of it ans where it is located.  maybe someone else will be looking for a restaurant there. Also, it is very helpful if you go to Find me Gluten Free and review it.
    • Hi. Im currently under consultants at my hospital,  and have just been for a blood test to test for celiacs. My symptoms are.... Low weight (8stone and 5ft6tall) Joint pain,particularly my hips and lower back  Severe pain in my gall bladder area which happens spontaneously... Especially after eating foods containing gluten.  When i have foods with wheat in i pain in my  right side just under my bottom rib, i become a bit spaced out and cant focus on anything. Also get diahorrea aswell. I recently contracted C-Diff and was in hospital for 4 days very poorly. Im 29years old (female) and the doctors r trying to work out what is wrong with me. I have always struggled to gain weight,  even after having 2 children i am still only 8stone. I was just wondering if u think i could have celiacs?  The pain in my side has been on and off for 7years! And the last 3years its been severe. And it definitely comes on as soon as i have gluten/wheat.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined