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Feeling Worse Since Diagnosis

Mysh

By Mysh
in Coping with Celiac Disease

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Mysh Rookie
Mysh
Posted

I've been doing gluten free now for a few months (also keeping dairy to a bare minimum) but can honestly say I feel awful.

I went back to my doctor on Friday and she's running a few tests (the thinking is that I am still anaemic).

Since going gluten-free I have also added a few things into the mix that I didn't have before going gluten-free.

Bowel issues (sorry TMI).

What a suspect is DH. (Doc says it looks like to her too).

I really don't know what to do. I feel worse since starting this lifestyle and I'm just slightly annoyed that despite giving up all my favorite foods (read junk food) I haven't lost a single pound. 3 root canals in under 4 months, I'm so sore it hurts to even lie down in bed. I feel like I should be jumping for joy - but it's quite the opposite.

Sorry for whining - nobody in my world quite gets where I'm coming from.

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ravenwoodglass Mentor
ravenwoodglass
Posted

I am so sorry that you are still having issues. Are you being really careful about CC issues? If you have DH you have gluten sneaking in somewhere. Recheck everything you put into or onto your body as if you have DH and it is still active you are still getting gluten somewhere. Have you checked all meds and supplements? If you take any generics they need to be checked at each refill and do read the whole label on all supplements. Some will have the gluten free label but still contain wheat or barley grass which is technically considered gluten free but many of us react to them. What is your diet like? You should be trying to do as much naturally gluten free whole unprocessed foods as is humanly possible. Some companies are not really good about disclosing high CC risks, Lays being the one that comes to mind first. If you go on line they have a real long list of gluten free snacks like doritos etc but the CC risk with those items is very, very high. It can be tough to find out what is getting us, and many of us become more sensitive after we have started the diet. This is actually a good thing as our body is trying to show us that it doesn't want even the tiniest amount of gluten.

I hope you figure out what is getting soon.

Mysh Rookie
Mysh
Posted
  • Author

Thanks for your reply. I'm not currently on any medication and am I'm pretty sure I'm eating totally gluten-free - but I guess of course cc is always a possibility. Like you said, DH may be because I am getting cc and not realising it.

I have a horrible metalic taste in my mouth today and I know that can't be dental fillings etc - I have no mecury fillings, all my teeth have crowns and my dentist knows about celiac.

Terrible nights sleep. Too sore to even lie in bed. :(

Back to the drawing board I guess.

Northern Celiac Newbie
Northern Celiac
Posted
I've been doing gluten free now for a few months (also keeping dairy to a bare minimum) but can honestly say I feel awful.

I went back to my doctor on Friday and she's running a few tests (the thinking is that I am still anaemic).

Since going gluten-free I have also added a few things into the mix that I didn't have before going gluten-free.

Bowel issues (sorry TMI).

What a suspect is DH. (Doc says it looks like to her too).

I really don't know what to do. I feel worse since starting this lifestyle and I'm just slightly annoyed that despite giving up all my favorite foods (read junk food) I haven't lost a single pound. 3 root canals in under 4 months, I'm so sore it hurts to even lie down in bed. I feel like I should be jumping for joy - but it's quite the opposite.

Sorry for whining - nobody in my world quite gets where I'm coming from.

hi, i went down before i rebounded as well. i was diagnosed in april of this year and went through the worst summer of my life. at my low point i was only 130 lbs(i'm 6'5"). I know now that I was consuming hidden gluten. You need to make sure that you're not eating hidden sources of gluten. If you need some reference books that helped, the gluten free bible is one, and Dangerous Grains is another.

It will get better I promise, I know because I went rhough it as well

ang1e0251 Contributor
ang1e0251
Posted

Thanks for your reply. I'm not currently on any medication and am I'm pretty sure I'm eating totally gluten-free - but I guess of course cc is always a possibility. Like you said, DH may be because I am getting cc and not realising it.

My DH does not flare unless I'm glutened. I agree you need to search for sneaky gluten.

Terrible nights sleep. Too sore to even lie in bed. :(

Two things that helped with pain for me. I now take sublingual B12, the methyl type. And it made a huge difference when I started taking the correct amount of magnesium. Dr. Carolyn Dean recommends 600 mg's for normal adults. I take more than that. You cannot start with the full dose. Start low and add every 3 - 4 days until you reach the best dose for you. If you start having D, back off the dose a little. You can take it topically also. Some people have reported pain relief from vitamin D. I take it but didn't notice pain relief. It can't hurt to try it also.

knittygirl1014 Rookie
knittygirl1014
Posted

It took me 4 months before I felt any better- I actually felt worse for the first 2 months- and I had to completely eliminate dairy and soy as well before the bowel problems went away. It's been 10 months and I just was able to add dairy back this week. Still off soy. I used to get that metallic taste all the time. Not sure exactly what caused it, but it is gone now. I agree, take lots of vitamins, be really careful about cc, and be patient! There are lots of great new foods to explore and enjoy, but I think it's really important just to keep it simple for awhile.

Mysh Rookie
Mysh
Posted
  • Author

Thanks again everyone - just had a call from doctors office - she wants me in to discuss results. Metallic taste has gone, but I'm still very sore and very tired.

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shendler Rookie
shendler
Posted

I'd suggest keeping a food log and how you feel after. Like, for me, eating corn makes me feel almost the same way I feel when I eat gluten. See if you notice trends with certain foods. Also if you feel sick after a certain meal double check that it was indeed gluten free.

It could also be there is something you are missing. For this I would go to the doctor and tell them what is going on. While it could be you are just getting gluten in your diet or you have other food intolerences, don't rule out it could be something else completely!

Good luck :)

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks again everyone - just had a call from doctors office - she wants me in to discuss results. Metallic taste has gone, but I'm still very sore and very tired.

I am glad at least the metalic taste is gone. Things of course are different for different folks but that metallic taste for me means I have gotten some barley. Could some possibly have snuck in under the 'natural flavors' in something?

  • 2 months later...
srsssss Newbie
srsssss
Posted

I am glad at least the metalic taste is gone. Things of course are different for different folks but that metallic taste for me means I have gotten some barley. Could some possibly have snuck in under the 'natural flavors' in something?

I feel "glutened" if i drink or eat anything with "carmel color" in it. Barqs root beer is supposed to be ok but had me sick for 3 days. I also had that "metallic taste", it went away. I was getting bad mouth sores and figured out it was the toothpaste i was using so I switched that too. Also had to switch to gluten-free shampoo/conditioner/makeup/lotion etc...things improved. I also suffer from DH and am finding that staying away from dairy has helped immensely. Am seeing a celiac specialist in Feb so hopefully he can help me sort this all out.

bluebonnet Explorer
bluebonnet
Posted

i also read that carmel color can be ify because of the source. i have kept a food journal of every bite i put in my mouth since day 1. its a tiny bit inconvenient but i'm 3 weeks into this so i feel like its a big help too. its a good reference if i need to figure out if i ate gluten somewhere along the way. maybe just eat whole foods too and cook them yourself so you know exactly what they are seasoned with and cooked on.

i hope you feel better soon! :)

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