Lost

[New2008]

I have been gluten free for about 1 year now and I still don't feel that great. I read the post's on here daily and read of people who feel great after days of being gluten-free. I am so lost....why don't I feel better? I have also tried to go DF. I struggle with that a bit more as dairy seems to be in more foods than wheat! .

Can anyone offer some support.

Angie

[YoloGx]

Hi Angie, I am sure it is frustrating. For some people its easy and for others it is hard. All of this takes time. Some of us have had this condition untreated for a very long time so it may take longer to heal or have more complications such as a leaky gut and a variety of food sensitivities as a result of long term damaged villi.

It may be that you are still getting trace glutens and/or you are are sensitive to other things as well, as many of us are. Try going off all grains and flours for a while to see if it helps and then add one at a time to see how you respond. Some have problems with other grains and some for a while with all grains.

Another hidden culprit can be candida overgrowth and/or milk products. For myself I usually can have organic nonfat plain yogurt but no other milk products. I also have to watch the amount of grains or flour I eat since it makes my tendency to get candida overgrowth run wild.

I also have to avoid all nuts; some find however by soaking them first say 8 hours or more they are more easily digestible. For me the only nut like thing I can eat are sunflower seeds, which I love by the way...

Am assuming you do take digestive enzymes, minerals and acidophilus, yes?

Meanwhile regular ingestion of marshmallow root caps and/or slippery elm can go a long way towards taking down the inflammation in your intestines. Dandelion root alternated with milk thistle (silymarin) caps (no tinctures due to the grain alcohol!) can meanwhile help out your likely stressed out liver and thus make you feel a bit better.

Bea

[rinne]

Hi Angie, sorry to hear you are still struggling after a year. I know how it feels. I was strictly gluten and dairy free (well almost dairy free but every few months I would try to reintroduce it) for two and a half years and still didn't feel better.

I think it is about 20% of celiacs who just don't seem to get better by going gluten free.

What is your diet like?

Were your vitamin and mineral levels checked?

Any chance it could be cross contamination? Did you change out kitchen tools?

I finally went to the Specific Carbohydrate Diet and after three months am seeing some improvement but it is slow.

And welcome.

[Jenny (AZ via TX)]

I know that this must be extremely frustrating. Have you have your bloodwork checked again to see if your levels are better? That way, maybe you can rule out cross contamination. It seems that so many people have other food sensitivities that they didn't have before going gluten-free.

I don't know what your symptoms are, but for me I had such fatigue in the beginning. I slept 10 hours during the night and another 3 in the afternoon. I finally got my thyroid checked and am now on thyroid meds. I feel so much better. My point is that maybe it's something other than gluten that is making your still feel sick. Have your vitamin levels checked. Many are low in D3 and B12.

I know you just want to get to the point where you can say "wow, I feel good today". I hope you get there soon.

[YoloGx]

What Jenny said is so very true.

For me I tend to be low on B-1 which is essential for proper protein and carbohydrate metabolism. I actually got Beri Beri without being either a drunk or starved despite taking B complex for years. I discovered I need to take B-1 in a co-enzyme formula for better absorption so it goes directly into the blood stream rather than through the liver first. I thus take a co-enzyme B complex by Country Life (on an empty stomach) which helps me enormously.

B-12 deficiency is more common, but nevertheless the co-enzyme B's would be good for either condition.

I avoid the sublingual tablets since I am sensitive to the sorbitol they all seem to have...

Bea

[ang1e0251]

It's so frustrating to still feel bad when you're trying so hard to eat perfectly. I've been through some of that. I have been able to track down my problem foods so far but it's like a puzzle where you don't know what the end picture looks like.

I think you need to go on an elimination diet to narrow down your problem foods/ingredients. Start with a very simple diet of whole foods that you prepare yourself. No mixes, no alternate grains; be stricter than ever. Keep a journal of every bite you take and spices you use. Also journal how you feel throughout the day. Don't add any new foods until you feel better. Then add one food at a time and journal how you feel with that food. Sometime the culprits are so sneaky it takes drastic measures to ID them.

Personally, I've found some things that bothered me that "shouldn't" have. So I don't care why or how, I just avoid those items. Last spring it was caramel coloring in my coffee syrups, broke out with DH and had a heck of a time figuring it out. I knew some of the recipes I was trying to make didn't sit very well with me, why? Finally after months, found it was the guar gum. It has a laxative affect that apparently I'm very sensitive to. I started reacting to ham, nitrites, nitrates? Don't know but now I eat Hormel Naturals that have no nitrates/ites in them and I'm OK. I like seasoned salt. Lawry's is gluten-free but we picked generic and didn't check the label. Look out! I'm aiming for the bathroom!!

Good luck with your quest. You can feel well again but it takes persistance. Let us know how you're coming.