How Long Until I Feel Better?

[morrisgirl]

Hey,

So I was diagnosed with Celiac very early in the game this past July (well the entire process took until October). I am very intolerant to gluten (apparently). Since October I've done everything from gluten-free, Casein-free diet to making sure my makeup, shampoo, face soap, ect. is gluten free. Im careful when dealing with mail (the seal has gluten) and accidentally had a horrible rash because some shoes i borrowed had tape in them because the tag in the boots irritated my friend. My family has gone gluten free and we have cleaned all areas of the house trying to keep me healthy. I came home from college because I kept getting sick and had to postpone finals cause I was too sick to deal with them. Now here's the problem (sorry for the lengthy intro), I came home to get better and I am getting worse. In the past month i have had four or five major reactions and countless minor ones (headaches, bloating, etc.). Is there something I'm missing!?!? I know it takes time for the diet to work but after four months my improvement is minimal. Any suggestions of what else i need to be on the look out for or where i could be going wrong would be great! I want to get my life back!

[ReneCox]

Hey,

So I was diagnosed with Celiac very early in the game this past July (well the entire process took until October). I am very intolerant to gluten (apparently). Since October I've done everything from gluten-free, Casein-free diet to making sure my makeup, shampoo, face soap, ect. is gluten free. Im careful when dealing with mail (the seal has gluten) and accidentally had a horrible rash because some shoes i borrowed had tape in them because the tag in the boots irritated my friend. My family has gone gluten free and we have cleaned all areas of the house trying to keep me healthy. I came home from college because I kept getting sick and had to postpone finals cause I was too sick to deal with them. Now here's the problem (sorry for the lengthy intro), I came home to get better and I am getting worse. In the past month i have had four or five major reactions and countless minor ones (headaches, bloating, etc.). Is there something I'm missing!?!? I know it takes time for the diet to work but after four months my improvement is minimal. Any suggestions of what else i need to be on the look out for or where i could be going wrong would be great! I want to get my life back!

I am in kind of the same situation as you. Ive been on the diet for 21/2 months with minimal improvement as well. The only thing I personally can tell you is what other people have been telling me...the healing process might just be taking time. I just quit my job as a waitress because I think being around all the gluten and loose flour was hindering me from healing as quickly..too risky. It would get all over my clothes etc... how long have you been at home for? a single glutening I have heard can take 3 weeks to recover from. Do you have pets of any kind? i wish I had more to tell you but I am very frusturated as well and still quite new to this.

[Curt]

Hey,

So I was diagnosed with Celiac very early in the game this past July (well the entire process took until October). I am very intolerant to gluten (apparently). Since October I've done everything from gluten-free, Casein-free diet to making sure my makeup, shampoo, face soap, ect. is gluten free. Im careful when dealing with mail (the seal has gluten) and accidentally had a horrible rash because some shoes i borrowed had tape in them because the tag in the boots irritated my friend. My family has gone gluten free and we have cleaned all areas of the house trying to keep me healthy. I came home from college because I kept getting sick and had to postpone finals cause I was too sick to deal with them. Now here's the problem (sorry for the lengthy intro), I came home to get better and I am getting worse. In the past month i have had four or five major reactions and countless minor ones (headaches, bloating, etc.). Is there something I'm missing!?!? I know it takes time for the diet to work but after four months my improvement is minimal. Any suggestions of what else i need to be on the look out for or where i could be going wrong would be great! I want to get my life back!

I understand your frustration as I have been gluten, dairy and egg free for 10 months and still have problems. I do have periods where it gets better for a week or more and then worse again. It would be nice if people on the forum who are better would post how long it took. If it can take over a year than you at least have hope. It may be that the people who got better are no longer on the boards. The majority of the people here are probably looking for answers just like you and I! Maybe we need to research this question elsewhere. I know I read things where people talk about being so much better after only a week of being gluten free but I kind of wonder if that is hype. The truth may be that if your intestinal lining is damaged from years of gluten it may take a long time to finally fully heal. I know I keep debating about going back to another gastro doctor thinking this diet is not the answer but the docs haven't helped me so far so I keep waiting it out. The other thing you may consider is when you first go off gluten I heard that your symptoms can actually get worse before you get better. My suggestion would be to hang in there and see if you get better for at least for short periods of time.

[hez]

For me it took over 6 months until I could tell a noticable difference. By a year I felt great. If I do get glutened accidently (this is usually from cross contamination) it takes me a month to feel back to normal. Everyone is different and everybody's healing time will vary. Just wanted to share mine. Stay gluten-free and you will feel better, I just can't tell you when!

Hez

[Marlene]

Hi there,

I just read your post and wanted to encourage you. I went gluten free July 1 and casein free in September. After 6 days I stopped having diarrhea after almost every meal the way it had been since the spring. However, I would still get bouts of D. It has been a roller coaster. I have good weeks, bad weeks, but not terrible weeks like I used to have. I believe this is all part of healing. As your body heals, toxins and bad bacteria die off. This may cause your symptoms to flare up again. If you google about healing you should find some pretty helpful sites.

Also, I would advise you to take a really good digestive enzyme. It is also extremely important to take a probiotic. Get one which is enteric coated -- that way, it'll get past the stomach acids and into your intestines. One word of caution, you will probably go through a healing cycle once the probiotic begins to work. Hang in there -- it could last for 7 to 10 days but afterwards you should begin to notice a difference.

I know that I naively thought I was going to get better in a few weeks after going gluten free just by things I had read. I was so discouraged when that did not happen. I would drive myself around the bend trying to figure out what I could have possibly eaten that I was reacting to. But I would continue to eat the same foods and lo and behold, I felt better. I knew it wasn't the food. Having said that, of course there are some foods that might cause irritation other than gluten or dairy. Example - spicy or acidic. Some people do have multiple intolerances which may go away once healing takes place.

I read a book by an excellent author (can't think of her name right now) she has Celiac and states that many Celiacs start eliminating all kinds of food from their diet because they think they are "reacting" to them. While this may be a possibility, it is also very possible that they are just going through the healing cycle.

Hang in there, stick to the diet like crazy and you will get better. It may be up and down but don't forget they say that it can take an adult up to 2 years to heal.

Also, try not to analyze how you are feeling every minute. I have done that as well and that also drives me crazy. Just try to relax and allow yourself to get better.

Take care,

Marlene