• 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.
  • Celiac.com Sponsor:
    Celiac.com Sponsor:

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:
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
Ads by Google:


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
      107,015
    • Total Posts
      933,810
  • Member Statistics

    • Total Members
      64,585
    • Most Online
      3,093

    Newest Member
    onlineessayhelp
    Joined
  • Popular Now

  •  

  • Topics

  • Posts

    • MK4800 I had it on a trial/rental for a bit trying to purchase one now. Things pretty good, and the cheapest on the market. If you order from the factory it cost $995 ($650+$345 s&H) I started a fund raiser from my bakery for it.   As for retail if you order on Amazon or Ebay your looking to pay $1100-1400 for it.    If your really interested I can give the sales rep your email and she can contact you about getting one. https://www.mkkchina.com/product/ice-cream-making-machine/ My plans when I get my own is to use it for catering, markets, and events. I found it on rental from a company out of Houston and tried it. Then looked into purchasing one.  
    • Ennis, Egg yolks are what make custard based ice creams. But you have me thinking. I make a frozen peanut butter pie where I make a Swiss butter cream frosting with added peanut butter. It tastes amazing. For my kids with lactose issues, butter isn't a problem (just fresh milks and cheeses), so I add butter to the whipped cooked egg whites then room temperature natural peanut butter. So I think that heating the honey and whites in a double boiler, then whipping and adding any solid fat would work. Then freeze (no need to churn because the whites and fat provide you with structure).   For Father's Day I made a chocolate brownie (cashew butter base) in a spring form pan, scooped out the center of the brownie leaving just a shell, added the peanut butter filling described above and topped with reserved brownie bits, froze that, then added a chocolate avocado ice cream and topped with chopped homemade dark paleo chocolate chunks...It was terrific! What industrial ice cream maker do you use?  I'm tired of making small batches of ice cream. 
    • Hello and welcome to the forum! i don't have a solution for you but I can tell you I had the same thing happen. After going gluten-free I was so extremely sensitive and the issue I had was the dh. I think I've read you can have flare ups even without gluten for quite a while. I certainly did! How long have you been gluten-free? I had flare ups and itching when I would even have foods that were supposedly less than or equal to 20 ppm. This went on for maybe a year? Something extremely ridiculous like that. Then one day my dh turned purpley and flattened out. Then one day it was a bit more skin colored and disappeared. Never had the problem since. good luck with it. I'm sure some others will chime in with their advice and great knowledge as well. You found a great place to be! It's my safe haven.
    • Victoria - Thanks for reply, man last night I was so itchy, and on a spot that hadn't been itchy for months! I'll keep an eye on gluten-free foods too

      artistsl - My hand was itchy yesterday and I ended up putting some off-brand neosporin on and it did help, so I'm glad we both had the same idea haha. Also I can't believe I forgot about hand soap! I've checked my shower bar soap (Dove) but for some reason I completely forgot to check the hand soaps here and at work, thanks! Oh and I don't need to see the pictures, I think I'm getting a better handle on what my body is doing now, but thanks! I've also stopped taking ibuprofin at night as a 'test' and I was itchy as hell like directly at midnight, but that might have been a coincidence so I'll keep going without that, and once a week I would put on that steroid cream I got from the dermatologist to help the really bad itching but I'm stopping that too.

      Thanks again everyone, man am I glad this forum exists!
    • The more people feel free to be who they are, the better, I say! Go forth and express whatever way you see fit. I like that you claimed your space. Plumbago
  • Upcoming Events