Day 2 Gluten Free-- General Questions

[Lisa16]

Hi. I was misdiagnosed with IBS (despite having very high IgA count) and have been sick for over 23 years now. I am in pretty bad shape-- joint pain, debilitating diarrehea, muscle pain, recurring dermatitis. I think it got pretty advanced. This is my second day of being gluten free and even though my stomach doesn't hurt as much now (was that a dramatic revelation!) and even though there has been some improvement in the diarrehea, I still got sick today (but with dramatically less cramping). Given that I was sick for so long (most of my adult life,) how long is it going to take before I see improvement in the diarrehea? How long before I can start digesting vegetables again? What can I expect? And what advice would you give a person in my situation?

Lisa16

[BRob66]

Hi. I was misdiagnosed with IBS (despite having very high IgA count) and have been sick for over 23 years now. I am in pretty bad shape-- joint pain, debilitating diarrehea, muscle pain, recurring dermatitis. I think it got pretty advanced. This is my second day of being gluten free and even though my stomach doesn't hurt as much now (was that a dramatic revelation!) and even though there has been some improvement in the diarrehea, I still got sick today (but with dramatically less cramping). Given that I was sick for so long (most of my adult life,) how long is it going to take before I see improvement in the diarrehea? How long before I can start digesting vegetables again? What can I expect? And what advice would you give a person in my situation?

Lisa16

I was also misdiagnosed years ago, I am currently seeing a naturopathic doctor and he is trying to heal the villi in the small intestine which could take 6months to a year. I was just diagnosed with celiacs but have been gluten-free for about two months. It took about a month for my muscle/joint pain to go away,,and i thought I was just getting old...LOL. the last couple of weeks have been great and i was living on Benadryl. i would seek out a good naturopathic doc and maybe see what other foods you may be reacting to. i am soyfreee,egg free and dairy free as well as a host of other things right now because of the damage to the small bowel. I hope u feel better real soon.

[happygirl]

The best advice I can give you is to stick with it. It'll take weeks or months to start feeling better. There is no one answer. Your body has to stop reacting to gluten, heal itself, and then make up for all the time that you haven't been absorbing well. Some see minor changes in the first week, others don't see changes for weeks...its hard to tell. But its important to be as 100% gluten free as possible in order to help with the healing process.

Dr. Green, a leading Celiac expert, has this on his webpage: Open Original Shared Link

Q: I've just been diagnosed with celiac disease. How soon will I feel better?

Most patients respond rapidly to a gluten-free diet and will often report an increased feeling of well-being. How well they feel, and how quickly, may vary depending on the nature, severity and duration of symptoms prior to diagnosis. There may also be some "ups and downs" as they work toward the goal of eliminating all gluten from their diet. There is usually a learning curve to finding what food, drink and drug products are safe and which contain gluten.

Also----

Read the forum and/or be involved in a local support group

Learn to effectively read labels and make informed decisions

Read Dr. Green's book on Celiac

Have ALL first degree relatives tested via bloodwork

Best of luck!

[Lisa16]

I was also misdiagnosed years ago, I am currently seeing a naturopathic doctor and he is trying to heal the villi in the small intestine which could take 6months to a year. I was just diagnosed with celiacs but have been gluten-free for about two months. It took about a month for my muscle/joint pain to go away,,and i thought I was just getting old...LOL. the last couple of weeks have been great and i was living on Benadryl. i would seek out a good naturopathic doc and maybe see what other foods you may be reacting to. i am soyfreee,egg free and dairy free as well as a host of other things right now because of the damage to the small bowel. I hope u feel better real soon.

Thanks for the timeline-- I am surprised it takes so long, but I guess it makes sense since there is damage to heal. Does anybody know if there is a relationship between the length of time you are sick/ untreated and getting intestinal cancer? That is my big worry.

I can relate to the Benadryl-- I was also taking it at night and found it did help with the joint pain and I also felt it made my stomach feel better (taking it during the day was out because it knocks me out)-- but when it wore off, it seems like those things came back with a vengence. The joint pain was terrifying because it was getting hard to walk down stairs (something you think you should be able to do in your 40s!) I thought I was going to have to sell my house.

Also, why do you think a naturopath is better to a regular doctor? I have always wondered about this (I have never been to one).... do they have different training for autoimmune problems? Or is it because they are more open-minded and consider treatment options other than pills like probiotics?

Lisa16

[Lisa16]

The best advice I can give you is to stick with it. It'll take weeks or months to start feeling better. There is no one answer. Your body has to stop reacting to gluten, heal itself, and then make up for all the time that you haven't been absorbing well. Some see minor changes in the first week, others don't see changes for weeks...its hard to tell. But its important to be as 100% gluten free as possible in order to help with the healing process.

Dr. Green, a leading Celiac expert, has this on his webpage: Open Original Shared Link

Q: I've just been diagnosed with celiac disease. How soon will I feel better?

Most patients respond rapidly to a gluten-free diet and will often report an increased feeling of well-being. How well they feel, and how quickly, may vary depending on the nature, severity and duration of symptoms prior to diagnosis. There may also be some "ups and downs" as they work toward the goal of eliminating all gluten from their diet. There is usually a learning curve to finding what food, drink and drug products are safe and which contain gluten.

Also----

Read the forum and/or be involved in a local support group

Learn to effectively read labels and make informed decisions

Read Dr. Green's book on Celiac

Have ALL first degree relatives tested via bloodwork

Best of luck!

Thanks! Especially for the website-- it answered some more of my questions. I also called my first degree relatives and told them to get tested (nobody had mentioned this, so thank you.) If relatives are found to be positive for the antibodies, is it a sure thing they have it? I also referred them to that website.

I already notice a marked difference in terms of pain and mental outlook, so I will definitely be sticking with this. Luckily my local supermarket has lots of stuff, so it doesn't seem like it will be that hard to do-- not a big sacrifice. The only thing-- I cannot seem to find crackers-- that is kind of a bummer.

I appreciate your advice!

Lisa16

[kschauer]

I have been gluten free for only two months and I feel tons better. The brain fog is lifting, I have more energy it seems and almost no more pain.

I second the advice on calling relatives. I called mine and found out I had one cousin who had been diagnosed for a while and another cousin was mysteriously ill with symptoms all pointing to celiac. I would have appreciated a phone call, I might have been diagnosed earlier.

Best of luck.