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Frustrated.

leighannh2

By leighannh2
in Coping with Celiac Disease

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leighannh2 Rookie
leighannh2
Posted

I've been two weeks gluten free (aside from a couple of 'learning mistakes' along the way). Even though my (limited) tests for celiac came back negative, I was really hoping to find a way to help my bowel problems, mainly frequent D, I decided to give this a try, thinking it may be gluten sensitivity.

The first 5 days or so I found what I thought was immediate relief, no bad bad bathroom episodes at all! Then, a couple days I had mild symptoms, then the dreaded withdrawal a week in (headache and oh so tired!), then a few days of normalcy. Now, the last couple days (days 14 and 15) I'm back to the same level of symptoms I started with, even though I've been very very careful. It's very hard to stick with this with these setbacks. Am I just expecting too much? I was hoping if I truly have a problem with gluten but don't have celiac disease, that I had found the problem early and would get better quickly, which seemed to be the case those first few days.

Anyone have any experiences they could share that might help me?

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Daniela03 Newbie
Daniela03
Posted

Honestly, your symptoms sound similar to some of the ones I've had & they weren't from gluten/wheat - they were actually from dairy and/or soy. Have you tried an elimination diet? That's what really helped me pin point exactly what was causing my issues. When you add back foods one at a time, you'll know exactly what you should & shouldn't eat. Trust me, I know you're frustrated - its taken over 3 years for me to figure out & adjust to my food allergies & I'm still working through them. Good luck!

PadmeMaster Apprentice
PadmeMaster
Posted

I spent the first month on a gluten free diet in severe pain. My issues aren't digestive tract (unless related to that evil milk -.- ), I have joint pain. And while 14 to 15 days seems like a long time (especially at first), your body may need more time. My body took about a month. Your body might be ready tomorrow or next week or a month from now. It all depends.

Although, what are you eating? Are you eating your normal foods with gluten-free substitutes, or did you go more pure than before, or? A lot of people have issues with the prepared foods (An amazing number, actually, if you read through here you'll see.). Also, you may need a new toaster, super clean your microwave, etc. Your issue may just be Cross Contamination.

I don't remember the first few days gluten free, but I've read a lot of stories on here pretty similar to yours. I think I would have given up at that point! Good job pressing forwards, it's worth it in the long run! You may also check that you're not having oats (Even gluten free. There is a protein in them that some people process the same as gluten. I'm just copying what I heard :) ).

leighannh2 Rookie
leighannh2
Posted
  • Author

Thanks so much for your help everyone! I'm dreading giving up dairy more than gluten, to be honest. I did some research last night and found some information on something entirely different that might be going on with me - bile salts D - and some people say that calcium supplements help tremendously with that. So, that's something easy I can try, and there is also a medication I can ask for from my dr, but I'm hoping to do without a prescription.

so, at this point, I'm going to try the calcium, and stick with the gluten free for a while longer, before eliminating another food.

Even if this doesn't turn out to be my issue, I have a son with Asperger's syndrome, and I'm learning about the diet through experience. I may start him on it (and dairy free) in a few weeks. So all is not lost, even if I don't find my answers here, I may find help for him.

Oh, and about the oats, that was the thing that would send me running to the bathroom before I went off gluten, so I have avoided them completely. Which is a shame cause I love 'em!

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