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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

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

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

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
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

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

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

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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    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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