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Still Sick, What Do I Do?
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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?

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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.

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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!

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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.

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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.

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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

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go to a GI doctor right away!

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Thanks for all the replies.

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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.

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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

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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.

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Thanks for the advice

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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

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...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

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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!

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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.

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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.

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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.

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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...

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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

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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.

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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...

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