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I Am Drowning And Need Some Advice

mhansen

By mhansen
in Coping with Celiac Disease

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mhansen Rookie
mhansen
Posted

I went gluten-free 1 year ago this month and the first 6months were great. Many of my symptoms cleared up I felt great but now that I have been feeling confident again in my food choices I have been getting the diarrhea and depression back. I went to 2 MD's that completely blew me off and wanted me to take IBS meds and get back on gluten. I know what happens when I accidently eat gluten so I went another path. I tried a Naturopathic doc and she gave me a huge list of food to avoid ie cheese, any beans, tomatoes, anyting with gelatin which includes the probiotics I am supposed to take.

I feel like I had to restart life 1 year ago for only 60% results. I need to get a handle on this because my dad died early of "intestinal tumors of unknown origin"and now his sister has it too.

I will take any advice

Should I go through the elimination diet?

Should I continue to see naturopath or go back to an MD?

Am I the only one that feels like I am drowning from all these foods becoming off limits?

Thanks

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Ursa Major Collaborator
Ursa Major
Posted

My off-limit list is very long. I recommend you do an elimination diet. MDs are very little help with any of this. IBS drugs would just be covering up symptoms (maybe), but won't fix the cause of your problems. That your MD suggests taking drugs and eating gluten again shows how ignorant he is, forget about him.

Stop eating gelatin? I have never heard of that, even though I am not saying that there isn't merit to it.

ravenwoodglass Mentor
ravenwoodglass
Posted

There could be a couple of things going on. One being your not as gluten free as you think you are and/or that you are now more sensitive to CC. I am going to list all the things that got me the first year or so and see if any of it rings a bell.

Toiletries - I did not eliminate gluten from my toiletries until almost 6 months in because no doctor thought it was needed. I was making myself sick from my shampoo and conditioner.

Meds - many of the ones I was on prediagnosis were not safe and it wasn't until I watched my pharm throw a hissy fit when I asked if she called the company to check that I realized she never really checked anything she filled. I now ask for the printout that comes with all scripts and check myself.

Pet Foods I had a bird and was feeding my kitties and dog gluten laden food, I gave away the bird and switched my furry friends to nongluten food. They are happier for it also.

Home Improvement products I set myself back a lot 6 months into the diet by hanging and finishing drywall.

CC from restaurants I was too shy to speak up at first about the diet and the need for them to cook my food in seperate pans, I didn't want to be a bother.

Last but certainly not least with my setbacks was companies like Frito Lay that put out copious lists of gluten free by ingredient but so heavily CC'd they really are not products. At least they taught me to ask that real important question ' Is this product produced on lines that produce gluten items?

If you have eliminated any possible gluten then an elimination diet may be very helpful.

Many of us develop other intolerances, soy is a real common one as is dairy. I would start out by eliminating those and seeing if that makes a difference. I kind of set myself up for a soy intolerance by virtually subbing it for gluten in almost everything. Soy is in almost everything gluten isn't it but eliminating it has been the final piece in the puzzle for me.

I hope you are able to figure this out soon and are soon feeling better.

Offthegrid Explorer
Offthegrid
Posted

I feel like this sometimes, too. My bet would be that you have other food intolerances. Dairy/casein is common. Soy is also common. In my case, I recently discovered by a challenge (eating tons of potatoes in 24 hours), getting really sick and then stopping the potatoes that I very well might not be able to have nightshades either. Nightshades are potatoes, peppers, eggplant and tomatoes. I always noticed that I got sick after eating pasta, and it might have been the tomatoes all along.

Elimination diet would certainly help you ID this stuff faster than I did. These days I eat primarily meat, veggies and fruits, and also some rice. There's also this diet out there called the specific carbohydrate diet. It is very strict, but offers some promise of letting you heal so you could again eat some of the things you are currently intolerant to now. I am considering trying it after the holidays.

Hang in there. It is not so easy as just eliminating gluten it seems for many people.

mhansen Rookie
mhansen
Posted
  • Author

Thank you for the advice I really appreciate it. Last night I realized that I am down because I thought I had done all the work with researching and then implementing the all gluten free diet and now I can relax, but I feel like I have only done part of the work and still have to walk up this big hill.

Then I think so many others have such a worse life than mine so I don't complain. But that is why I always turn to this site to get some help.

thanks

blueeyedmanda Community Regular
blueeyedmanda
Posted

I also think the elimination diet is worth a shot. It could be that you have become intolerant to other things. It does happen to some people.

Jestgar Rising Star
Jestgar
Posted

I second (fourth? fifth?) the elimination diet. I accidentally went soy free and felt so much better that I've started limiting a lot of other things as well. Now I severely limit my intake of soy, but don't worry about it cooked into things. Everything except gluten I can eat a little of as long as it's before 2pm (I have sleep issues).

You may find that you need to totally eliminate some things initially, but can add back small amounts after your body has healed.

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tom Contributor
tom
Posted
. ..Soy is in almost everything gluten isn't it but eliminating it has been the final piece in the puzzle for me.

That's me to a T!

I kick myself that it took an extra 3.5 yrs after going gluten-free to finally find the final piece and actually be happy to be alive again. :)

C'smum Newbie
C'smum
Posted

I am confused by your message.Have you remained on the gluten free diet or come off of it once you felt better?

buffettbride Enthusiast
buffettbride
Posted
I am confused by your message.Have you remained on the gluten free diet or come off of it once you felt better?
I think they mean they are off gluten, plus soy and dairy as well. Once you go off gluten and feel better because of it, there would be no reason to go back on to gluten unless you were specifically doing a gluten-challenge or to try and get a positive Celiac diagnosis.
mhansen Rookie
mhansen
Posted
  • Author
I am confused by your message.Have you remained on the gluten free diet or come off of it once you felt better?

I have been gluten free this whole year. But I am realizing it is not enough.

BRob66 Rookie
BRob66
Posted

i have never done the elimination diet,,,was tested for other food allergies along with bloodwork and a saliva test with ny naturopath.I am gluten-free,soy-free,dairy-free and egg free. I have only been doing this about 2 months and am feeling so much better,,hang in there.

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