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akcyb9

I Need Help!

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hey guys! I have been gluten free for almost over a year now and I am still getting super sick. I have cut out all gluten and am pretty strict about cross contamination. However, i feel like no matter what i eat I am still bloated, still constipated, and still throw up. Just this past wee I have thrown up three times. Also, in November I was throwing maybe once a week. I feel like nothing helps and I am stuck on this trap. People keep saying I just keep cross contaminated myself but I honestly dont believe i can be doing that often when i am trying to be as careful as I can. Has anyone else has problems with this and what do i do to help myself!

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Do you eat any gluten free process/packaged food? Can you eat gluten free oats? If yes, you could be reaction to low levels in the food. It is also estimated that 10-15% of celiacs react to oats, even gluten free ones, and there can be an issue with oat cc (Bobs Red Mill can have oat cc as I am intolerant to them and any products). I would look at those things first and go back to eating fresh meats, fruits, veggies and whole foods and see if things improve.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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Are you celiac or just trying out the gluten-free diet to see if it helps? With that much vomiting I really think you should get to a doctor if you haven't gone already.

As far as foods, soy and dairy both made my stomach hurt when I first went gluten-free. A lot of folks on the board are sensitive to them.

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I do not eat oats! My mom is a personal trainer and everything we eat is from whole foods uness i bought it and it always says gluten free on it! And yes i have been diagnosed with celiacs.

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Well, I found eliminating soy and dairy really helpful at first. If you cook from whole foods it isn't too hard. Another to look at is fructose. My mom can't tolerate that and when she eats it she gets really nauseous. I really hope it helps because you sound pretty sick. :(

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I do not eat oats! My mom is a personal trainer and everything we eat is from whole foods uness i bought it and it always says gluten free on it! And yes i have been diagnosed with celiacs.

Just a thought.....since your mom is a personal trainer.....do you drink protein shakes? I discovered gluten in a supposedly gluten free rice protein shake although I can't immediately recall the name. I used the EZ gluten home test strips when I couldn't figure out what was getting me. I also tested the supposedly gluten free dog food. Also positive. Have you been to an allergist for testing for other allergens?


Jillian

*******

I was dx Celiac 2008 + casein, soy, legume, & nightshade intolerant; dx hypothyroid 2006

14 yr. old daughter dx Celiac + plus casein & soy intolerant 2008

12 yr. old daughter dx gluten intolerant 2008

9 yr. old son dx Celiac 2008 + casein intolerant. DH Rash.

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I'm going to second the opinion that you seek professional help. It sounds awful, and you can really damage your teeth and esophagus. (Horror stories from friends who had buleimic sisters, which I am not suggesting, but the effect on your body is similar even when it's involuntary.)

You could have a secondary condition, or perhaps something else entirely if celiac testing wasn't done and gluten-free hasn't solve the problem. We don't tend to suggest it because diagnosis is so challenging and many people do need to be gluten-free, but there are lots of diseases out there.

Please find a good doc, before you end up in the ER!!


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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A agree it makes sense to visit a doctor and see if there are other possibilities for conditions that you should look into.

You say everything you eat is from Whole Foods and says gluten-free on it, but Whole Foods has lots of processed crap, and gluten-free only means "tested to have less than 20 ppm gluten." Our family eliminated all grains and stopped eating anything that *needed* a label to tell you it was gluten-free, and we are now much healthier.

Have you considered trying a healing diet like the SCD or GAPS? Your gut flora is probably way out of whack. These diets are aimed at starting off with only the most easily digested foods while introducing good gut flora. I've posted a lot more about GAPS and you can read some more of our experience on our blog from my profile.


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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Can you have your blood tested for antibodies to rule out cc?

Test for fructose malabsorption.

Avoid dairy. Avoid Soy. Avoid sugar.

I have similar issues to you and I am finding that I have to avoid lots more foods in addition to gluten.


May 2010 Diagnosed coeliac via biopsy - on gluten-free diet, now not anaemic

March 2010 Still Anaemic and very fatigued, abdominal pain still (Drs had thought it was related to abdom operation)

May 2009 Anaemic - had abdominal surgery; hysterectomy to remove large fibroid

March 2009 Vestibular neuritus (not sure if related but who knows!)

November 2008 Depression (still on meds - working well)

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i have been having a similar problem. i have also been gluten free for awhile about a year now. i am still bloated, have diarrhea, stomaches. i have not really had a problem with throwing up which i am grateful for. that seems bad. i agree with the other poster bulimia has all sorts of health problems and while you are not doing it on purpose it cannot be good for you. hopefully you can figure it out, people on here can help, and you can see a good doctor. i agree nothing seems to help. well almost nothing for me. i was not constipated, my headaches stopped, and my skin cleared up when i went gluten free. when i added digestive enzymes it helped me go the bathroom better and more like what i imagine is normal. perhaps that would help you too. i understand cc happens and can be an issue, but i also think sometimes doctors use it as an excuse because they do not know why we are still sick and it is easy to blame cc than to admit the medical community really does not know. as frustrated as i am at times with doctors, i think your situation calls for seeing them given how you throw up so much. also i wonder if you are casein intolerant or having cross reactivity to other foods. best wishes!


Misdiagnosed - IBS, TMJ, eczema, KP, etc

Real Diagnosis - Gluten & Casein (milk protein) Intolerance, Cross Reactivity to Yeast & Buckwheat

Recommend: Tests: Entero Labs Gluten Sensitivity & Gene Testing

Books: * Allergies by Dr. Carolee Bateson-Koch (digestion, yeast, parasites, body pH...)

* Why Do I Still Have Thyroid Symptoms by Dr. Datis Kharrazian (gluten & autoimmune problems)

* Change Your Brain Change Your Life by Dr. Daniel Amen (foods, supplements...)

Supplements: * digestive enzymes, * probiotics (dairy free - Klaire Labs - Pro5)

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Some of us, super sensitive celiacs, cannot tolerate even the tiny amount of gluten allowed in gluten free products. That might be your problem. You would need to eat produce and meat only for a time. After you get healthy you can add other things one per week to see what you can tolerate. I do eat a few processed foods. I have a salt, an olive oil, a coffee, etc. which I can tolerate, but I had to add these carefully to find one which worked for me. You would need to do your food preparation and live in a gluten free household.

To start, you could try to just eat produce and meat for a week or so and see if that helps. Wash everything carefully.

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I just made a post about how to really eliminate cross-contamination from your home. Here it is!

Have you done everything listed there? If not, it really could be cc. Otherwise (or in addition, actually), definitely look into other potential causes like fructose malabsorbtion, SIBO, etc.

I found I had terrible constipation and other issues when gluten-free until I cut out all grains and did GAPS.


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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Are you using soaps and shampoos etc that don't contain gluten? I did not get better until I deglutened my products. There are very few products that will actually claim gluten free, but the only gluten I've ever found says wheat oil, wheat extract, wheat whatever on the label. Never seen malt, barley or rye in a product.

Tocopherols technically can be made from wheat, but the Canadian Celiac Association deems them safe and has a big position statement on it. I've never had a problem with them, so I use products with tocopherols. I'm very very sensitive too.

Suave is generally safe for the cheap stuff. I am a big old product snob though. LOL I use Bath and Body Works, Biolage for shampoo and conditioner. I do use Suave shower gel for hand soap because my hands are sensitive and I can't use regular hand soap.

Hope this helps.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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There are lots of gluten-free shampoo options, but I just want to put it out there that we switched to "no-poo." We use baking soda for shampoo, and rinse with apple cider vinegar. My hair is nicer that it's been even when using the fancy stuff. It's a lot less expensive!


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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Thanks guys I have an appt with my doctor next week he wants to do another upper endoscopy and biopsy of my stomach. Its hard because I have good weeks/ months and horrible weeks/ months! I just want to be better and enjoy food with out being sick.

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I dont know if this is related but the last two months I Have developed an eye twitch and it seems to get even worse everytime I think I have been glutened. Any one else had problems with their eyes?

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I get an eye twitch when I need potassioum. I eat a banana & it gets better. Does take a few days to completely stop.


 

 

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