Gluten-free Two Months, Feeling Bad

[mamasaidso]

Felt pretty good first month or so with no gluten, but all kinds of new symptoms popping up. Have a really bad problem with photosensitivity and heat exposure. Much worse that before diagnosed with celiac. Have terrible fatigue and balance issues Just feel out of it mentally. Was hoping the B-12 supplements would help. Taking them sublingual as you all advised. My dermatologist was really concerned and did bloodwork for lupus, which isn't back yet. So now I'm really worried. I realize one autoimmune disease can follow another. Was not expecting to feel this bad. I think my next appts will be rheumatologist and neurologist. Still having tingling in arms and legs, but the fatigue is a real problem for me. Used to being really active and don't feel like doing anything.

Have any of you been this path?

Thanks for all the support.

Maureen

[Lisa]

Sorry that you have not been feeling well.

It took some time for me to remove gluten and when I did, I realized that dairy needed to go for a while. I was able to add it back in a month or two. Gluten reactions can have a very loud voice. When it's silenced, you often find that other things are bothering you.

B-12 takes a very long time to deplete and likewise it may take some time to add it back effectively. Have you had a full metabolic blood panel done to show any deficiencies? Fatigue was the last to leave for me.

I would also revisit everything for gluten. It is very tricky to catch everything. Gluten can be very sly.

[mamasaidso]

Hi,

Thanks for responding. I'm wondering if we are getting glutened, like you said, and just don't realize it. Am careful eating out. Chinese restaurant we love to go to is careful to tell me about menu, but wonder if that is it. I've had a panel done recently and B-12 was at low end of normal and iron was great. We eat home most of time and I'm gaining weight on gluten-free bread and choco chip cookies.

I did have severe blunting and damage, so might just take some time to heal. I don't really eat any dairy because I don't tolerate it. Took soy out of diet and use organic rice milk instead. Do you think getting tested for food allergies might help?

This certainly is a learning process and gastro doc was right. It's a tough diet. My daughter is finally getting used to diet. Funny, when I make sandwiches for rest of family using wheat bread I don't even like the smell of it. I do wash my hands after handling their bread. Could that be it? I think we're getting exposure somewhere. Okay, now I'm paranoid.

[flourgirl]

Hi! I know just where you're coming from. When I started the diet, at first I thought I was doing better....tho' my energy level stayed bottomed out. I've been gluten-free since November, and have only been doing much better in the last 2 weeks or so. Balance problems are mostly better, until I get really tired (which still doesn't take a whole lot but I'm gaining), I also get headachy, out of sorts emotionally (sometimes I feel like a little kid going through melt-down ). I have been doing physical activities (yard and gardening) to gain back some strength. I do only as much as I can do each time...but am able to do more and more.

After the first few weeks on the diet, I went on an emotional rollercoaster. Was SO sick and tired of feeling sick and tired. Seems my whole body got involved....wanted to sleep all of the time, hair falling out, headaches and dizzy, pain in my belly, very low blood pressure and irregular hearbeats, feeling like I was freezing to death and could not get warm. A lot of this started before the diet change...but seemed to get worse for a while. I DID find that I was glutening myself (I think), with vitamin supplements. I've gotten so paranoid about food I only eat at home unless I absolutely cannot avoid it. I regularly re-check all of my supplements...actually....everything in the house....just for peace of mind. I'm glad to say that for the most part I have been doing so much better in the last few weeks. Energy levels are rising, but I still have a way to go.

So, I guess that my advice would be to just hang in there....be strong and strict about your diet. It may be that you just need time for your body to heal and to adjust to a new, healthy diet. All 7 of the bodys systems are affected by digestion (or lack of it), and need time to become healthy again.

[Rpm999]

to me, if you felt better and then worst, you're most likely glutening yourself...when i first started the diet, i felt better in some ways right away, and then i felt worst again, and had no clue why...it was mind boggling, and made no sense, but then i found out that the easter peanut butter eggs have gluten...it's all just getting used to the hang of it, people say celiac is a hard thing, but once you're in the swing, it's easy...there's no need to be all paranoid, just know that anythings possible so look at what's in front of you....good to always search on here for things you're not sure about, chances are it's been answered