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Did any of you ever get discouraged that your symptoms wouldn't go away?

glutenkid

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glutenkid Rookie
glutenkid
Posted

I've posted about this before, but I'm about 14 weeks in and have seen very little improvement. Did any of you take a long time to feel better, and do you think I should cast my doubts aside?

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Airchee Rookie
Airchee
Posted

Hello

I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement.  Hang in there. 

rarchy Apprentice
rarchy
Posted

I was diagnosed with celiac very recently and so have only been gluten free for 5 weeks and was wondering why I haven't noticed much difference (just because I had read stories about people who noticed a huge difference after 1 week). My digestion has improved a little (less constipated, more regular and less bloat/gas!) but other than that nothing else.... I am glad to know I am not alone in not noticing anything, and also knowing how long it has taken you guys I will try not to get depressed if I still don't notice much for a few months!

Fbmb Rising Star
Fbmb
Posted
On 4/28/2017 at 9:05 AM, glutenkid said:

I've posted about this before, but I'm about 14 weeks in and have seen very little improvement. Did any of you take a long time to feel better, and do you think I should cast my doubts aside?

Oh yeah. I'm 6 months in and still have bad days, even though I know I'm not eating gluten. It takes a long time to heal. I have been on here a lot in the past 6 months venting because I didn't feel good. I just posted today about how tired I still am. Everyone has basically said the same thing - give it time. Be patient. It can take a long time. Some people said it can take a year. Hang in there.

TexasJen Collaborator
TexasJen
Posted

Yes!  I never really had GI symptoms, but I did have palpitations and restless leg syndrome from anemia.  These went away within the first month. But myalgia and joint aches aren't better after 1 year.  Waiting to get my antibodies re-tested and see if they're negative.....

KKJ Rookie
KKJ
Posted

This is not uncommon. When you have celiac, your gut has been damaged and needs to heal. While going gluten free helps many fairly quickly, for others the journey to healing is a bit longer. The worse shape your gut is in at diagnosis, the longer healing can take. I noticed good results for the first 2-3 months and was eating mostly paleo because I realized I just was not digesting ANY carbs well, but then improvement leveled off. I found a nutritional therapist, NOT a dietician or nutritionist. A nutritional therapist is different training, food as medicine etc. and focuses on healing the gut. She also had celiac and was a wealth of info on the healing patterns of different folks. She suggested the GAPS diet for a while. So, I went through GAPs intro and then did full GAPS for about 7-8 months. That was exactly a year ago and I am just now able to put back rice, blue corn (yellow still a problem) and, in moderation, tapioca flour. I feel GREAT, but it has taken time. My suggestion is find a good nutritional therapist. If you are still eating LOTS of carbs, your gut may not be able to digest them. Does it take discipline? Yes. Does it mean you may have to learn to cook? Probably. For me, feeling great and being healthy is worth it's weight in gold and although I do get weary of always cooking, it's WORTH IT! Most packaged gluten free stuff (especially cookies etc) is truly not real good for you and will not help you heal. Be sure you are taking a good quality probiotic as well. MegaFood's Mega Flora is very good and safe for celiacs.

icelandgirl Proficient
icelandgirl
Posted

Hi glutenkid,

Yes, I was very discouraged for a while.  I heard about people feeling better as soon as they went gluten free and couldn't understand why that didn't happen to me.  

For some of us it takes much longer than others to heal.  In the first year after diagnosis I had a lot of ups and downs.  It was really rough at times.  This board was so helpful to me at that time because I was scared that I would never feel good.  

It really took about a year to feel pretty good for me.  Now at 3 years I still see improvements happening!  It can take the body a long time to heal from years of damage.  You have to be very patient.

Try to eat a diet rich in while foods.  Avoid eating out for a while.  Make sure that you've been checked for common deficiencies like iron, B12 and D.  Most of all, be good to yourself.  You will heal with time!

((((Hugs))))

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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