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I Need Help!

akcyb9

By akcyb9
in Coping with Celiac Disease

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akcyb9 Newbie
akcyb9
Posted

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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Roda Rising Star
Roda
Posted

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.

Skylark Collaborator
Skylark
Posted

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.

akcyb9 Newbie
akcyb9
Posted
  • Author

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.

Skylark Collaborator
Skylark
Posted

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. :(

climbmtwhitney Apprentice
climbmtwhitney
Posted

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?

sb2178 Enthusiast
sb2178
Posted

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!!

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domesticactivist Collaborator
domesticactivist
Posted

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.

Kim69 Apprentice
Kim69
Posted

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.

viviendoparajesus Apprentice
viviendoparajesus
Posted

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!

dilettantesteph Collaborator
dilettantesteph
Posted

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.

domesticactivist Collaborator
domesticactivist
Posted

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.

sandsurfgirl Collaborator
sandsurfgirl
Posted

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.

domesticactivist Collaborator
domesticactivist
Posted

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!

akcyb9 Newbie
akcyb9
Posted
  • Author

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.

akcyb9 Newbie
akcyb9
Posted
  • Author

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?

kareng Grand Master
kareng
Posted

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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