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Need Help Please.

jsg1518

By jsg1518
in Coping with Celiac Disease

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jsg1518 Newbie
jsg1518
Posted

I was diagnosed with celiac in July of this year. My symptoms were only severe stomach pain and bloating. I am 44 years old. My question is that I am very strict with my gluten free diet I dont take chances , havent even gone out to eat since I started, just wanting to make sure I have a handle on this before. Every once in a while, twice this month, I still get the pain that I experianced before the diet. Is there any explanation for this, some of the times I even had written down what I ate a couple of days prior to the pain so I know I didnt eat anything wrong. Is this something that happens for a while after going gluten free and will eventually stop when your intestines totally heal. I cant get an answer from anyone I am the only one in my family with it and afew other people I know that have it had no symptoms therefor they dont have any answers. Sorry for the long 1st post but I found this site very informative and really needed some answers...Thanks JOE

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happygirl Collaborator
happygirl
Posted

Hi Joe -

Welcome to the board. I'm sorry that you are still having problems. How were you diagnosed with Celiac (via bloodwork or biopsy, or both)? Have you returned to your doctor for follow up testing, to confirm if your Celiac blood panel is returning to normal? If it isn't, it may be indicating that you aren't healing quickly, or that you are still ingesting gluten. Does your doctor have any ideas? It may be worthwhile to see your doctor, not only to check your celiac antibodies, but also to check for other issues.

It can take a minority of people more than 6 months to fully heal, especially if they were severely damaged and/or had undiagnosed Celiac for an extended period of time.

Some members find it helpful to post what they eat - and have found that something they were eating did have gluten in it.

Good luck!

jsg1518 Newbie
jsg1518
Posted
  • Author

when you mean "fully heal" do you mean that the pain should go away after some time of being gluten free. I did suffer from pain for several years untill I went to a new Dr. who did a blood test and biopsy in july But now that Dr moved his practice and I need to find a new one.

happygirl Collaborator
happygirl
Posted

By definition, Celiac Disease causes damage to the villi of the small intestine, which is how Celiac is diagnosed (the presence of blunting and other characteristics of the villi, which are correlated to the bloodwork). When I discussed fully healing, that is what I was referring to.

It may be beneficial to get copies of your records from your previous doctor and find a doctor close by that specializes in Celiac. You can search on this board for a doctor, or contact a local Celiac support group and ask who their members would recommend.

ravenwoodglass Mentor
ravenwoodglass
Posted

Did your doctor tell you to check all scripts, supplements, personal care products like shampoos and lotions? Do you consume gluten grain vinegars and alcohols? They are safe for many but not for all. Do you have a significant other who still consumes gluten or are you in a mixed household? Kissing someone who wears a gluten lipstick or has been eating or drinking the stuff will also often make us ill. There is a lot to be wary of when it comes to being celiac and differences in sensitivity abound. It often takes some time to know how sensitive we are and how much we react to cross contamination both in processed foods and in nonfood items. I hope you are feeling better soon and welcome to the boards.

frec Contributor
frec
Posted

Are you still eating dairy? A lot of people with celiac disease lose the ability to digest dairy because the enzymes are produced in the (healing ) villi in the small intestine. Some people, especially older people, never get the enzymes for dairy back. I was diagnosed at 46 and never could eat dairy again.

Are you taking a probiotic? Acidophilus of some kind? (Make sure it is dairy free though.) It really helps with general digestive heath and healing.

Even though you have been healing for six months your digestion might still be kind of puny, even for food that are OK for you. I had to eat kind of unambitious foods for the first year and go easy on exciting things like, oh, onions, or beans, or whatever.

You might want to search this forum for a good doctor in your area, or post a question about it. Good luck, and I hope you feel better.

harp1 Apprentice
harp1
Posted

I take quite a while for the villi to heal. Some one else would know on the list.

I was diagnosed with celiac in July of this year. My symptoms were only severe stomach pain and bloating. I am 44 years old. My question is that I am very strict with my gluten free diet I dont take chances , havent even gone out to eat since I started, just wanting to make sure I have a handle on this before. Every once in a while, twice this month, I still get the pain that I experianced before the diet. Is there any explanation for this, some of the times I even had written down what I ate a couple of days prior to the pain so I know I didnt eat anything wrong. Is this something that happens for a while after going gluten free and will eventually stop when your intestines totally heal. I cant get an answer from anyone I am the only one in my family with it and afew other people I know that have it had no symptoms therefor they dont have any answers. Sorry for the long 1st post but I found this site very informative and really needed some answers...Thanks JOE
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      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
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